Hello,
Wish I felt more like jumping up and yelling Happy New Year but somehow this government of our has sucked the life out of me. Chris's lawyer seems to have given up some time ago in fighting for his rights or making an argument for his staying, it seems if it takes work, he does not want to tackle it.
Changes are in the works.
I am finalizing the Society we had to get in place in order to be eligible for home care funding, something his lawyer was to do but will not, nor will they cover the cost of putting it together. It looks like the lawyer’s inability to secure an advance from the insurance company and bring our plan together is going to carry on for some time now. It has been over two years and not a penny advanced, I have tried to covered all the costs up until now with it causing stress for me and Chris. With the trial likely another two years away we will have to raise approximately $250,000.00 to allow for the care and rehab we will have to provide until it is settled.
What isn't used for rehab will go to altering our home to make it safe and secure for Chris' care hopefully we can put that together in quick order. My mistake was thinking that a lawyer hired to look after all aspects that could arise from such a disastrous situation would in fact do that, which is not the case.
Just so I can air my disbelief in the job done or not done. I would like to say that this same lawyer told me that after approximately six months and based on police reports and ICBC investigations there was no case to pursue.
Basically enough money from ICBC to cover care costs for about three years then nothing!
I took it upon myself to investigate the car, the accident scene, government paper work and endless days examining the site of the crash. I was able to bring all of this together with evidence and records from freedom of information. Even though this was all done by myself I still had to convince this lawyer that the case was unbelievable. I now see a lawyer running with a lawsuit that promises to be very rewarding and yet the day to day needs of Christopher are going unfulfilled because we cannot access any of this money or assistance.
If anyone has suggestions on how to finance or fund the shortage until we get through this very tight time I am all ears to looking at a plan. I could also use some legal advice to several questions I have not been very trusting as of late so again if any of you know of a trustworthy lawyer who can be upfront and honest and who doesn’t waiver from day to day on issues I would be indebted for that contact information.
Any advice or information you don’t want to post to the site you can email directly to drbigelow@shaw.ca and it will be kept confidential and I will be the one to access it, Thank you.
Did not mean to go on, but the frustrations build and build and there is never a place to vent so here I am doing it. I know I cannot do everything that is required, but I will give every free minute to do whatever it takes to make right. I also know Chris has a lot of friends and supporters who may be able to shed some light through their experiences or give some advice on how to get through all this red tape.
The time has come where changes are happening and to move forward means pressing on to secure what is needed.
Chris’ therapy has been on holiday mode for the last week and will be until the start of next week. His pool sessions and Physio has been taking up the bulk of his time as so many are away on Christmas holidays. Physio has been so great filling in extra slot of time where openings have been left missing therapists.
Christopher and I are wishing all of you a very Happy New Year.
Drive safe, have fun, don’t drink and drive.
Thanks everybody,
Kevin
Thursday, December 31, 2009
Monday, December 28, 2009
Monday December 28, 2009
Our meeting with CBC went great today,
The point was made and hopefully people as well as the Government and health officials will take note and do the right thing and extend Chris' stay. Maybe with the wisdom that is picked up we will be able to build a place here to run therapy for brain injury, as there are hundreds and hundreds of people in our home province with brain injury and very few of them will get the rehab that is necessary for them to move forward and even have a chance at life.
Please let everyone you know and ask them to spread the word that the CBC program GO PUBLIC will be on Tuesday January the 5th, 2010. CBC radio morning news as well as the internet at CBC.ca, where the story will be in print form with pictures and video.
Later make sure to watch the CBC evening news in BC and on the CBC National news across the country that same night.
It will be extremely important that everyone leave a comment on the CBC webpage at the end of the story, the more comments and feelings expressed the more important it will become for government to deal with.
With all the distractions happening over the last month I realize that the updates for Christopher has been few and far between, just wanted to let you know this therapy is still going on strong and he still doing great, we hope to keep it that way.
But as I expected early last week we had social worker from Surrey phone the social worker in Ponoka to ask what the feeling was I guess looking for a heads up before talking to me. I told the social worker in Ponoka to have the social worker in Surrey to call me directly which he did.
The social worker from Surrey called and asked me what my feelings were about Chris coming home, what my plans were for Chris and had I thought of an extended care place I would be happy with because he could not stay in an acute care bed in the hospital when he returned.
Interesting because I believe it states you must take the first available bed and do not get a choice, which also means you can sign for acceptance and end up in a hole of a place. Then it is too late to change or do anything about it.
Here again is the health ministry working behind the scenes with smoke and mirrors spinning the plan into motion and pleading ignorance when questioned on it.
Enough said and wasted on the health system plan or lack of, it has already taken an untold amount of my time away from Christopher.
I was amazed how quickly the government can band together to suppress or pretend to have never heard something when it is needed but when asked to help or departments to work together you can feel like you are talking to a brick wall.
I proceeded to tell her that my plan was to finish therapy with Chris in June in Ponoka and have him return home, to his home to continue therapy that was designed by the therapists in Ponoka.
So it turns out exactly the way I said it would a month ago, on word that the extension was only going to be six weeks not the three months. I told those who would listen that the health ministry was looking for extended care for Chris not rehab. We have not to this day received a reason for their decision, not a call to explain, not an email in return to our requests, they tell us on one hand that they are looking into the extension and haven't made a decision yet (still waiting for more information) but they have their people already preparing for an extended care facility for Chris. Which means there will be no rehab or no further continuing of Chris's therapy to move forward basically they have put a gun to his head and said this is the end.
I do cling to the hope that there is still that small percentage of hope that they're going to change their minds come to their senses to do the right thing and provide an extension that Chris so desperately needs. But this teleconference won't take place until 11 January four days before Chris comes home.
The only MLA from all letters written to even acknowledge, was Gordon Hogg’s office from Whiterock they were concerned and said they would like to help and would check out with the health Ministry and Kevin Falcon, who is my and Christopher's MLA and get back to me. Tuesday morning they called me back to say that Mr. Falcon's office had received letters and he was aware as to what was going on and that no decision had been made, they were still waiting for more paperwork to come from Ponoka. I let Gordon Hogg’s office know that I had just been talking with the doctor in charge in Ponoka, and no such request has ever been made. For almost a month they have been telling people that they are looking into it, and taking care of it. i guess they just forgot to send the request just a minor over sight.
All of you who have read the previous blogs I have posted saw the letters from the Halvar Jonson Center in Ponoka from the Therapist, doctor and from Chris' neurologist here in Surrey. Can you all read english did any of you have trouble understanding the wording.
I have had a ten year old read it and even they understand what is being said and what Chris' best interest would be? Getting lost in all of this is that there is to be a minimum amount of therapy to be happening, just for him to survive, let alone move ahead with even the slightest chance of improving further. If Chris has to return to BC all the work we have done over the last two years was in vain, why would you save a life then walk away it makes no sense?
I don't know how you people would feel about your own MLA twisting the truth or just not being up front and honest to a fellow MLA and the Health Minister none the less, but I am appalled, I am still in shock listening to this MLA preach the word from the health ministry as if it were the truth without questioning the facts. I even gave an accounting for all the things that were being told, that were wrong but I guess because I am not their constituent it's not worth the follow up.
I really do believe though that this MLA owes an explanation to his constituent that wrote the letter, so as to answer this constituents concern.
I would think that we should all be a little concerned about our well-being.
The day before all of this transpired I was also told by the communications department in the Alberta Health Services, (which is their equivalent of our BC Health) that I would no longer be able to have CBC's cameramen or reporters or anyone from CBC set foot on Alberta Health Services property, so basically there would be no film no coverage, no story, I asked why, as it was to promote the extraordinary brain injury work being done in Ponoka, and to help everybody with an injury be informed, not just Chris I was told that Alberta has a good working relationship with BC and they didn't want to harm it, so basically BC stuck their fingers across the province line and blocked our story or tried to block our story from being told. It would seem the walls they can through at you are never ending, just think of the tax dollars being used to suppress instead of helping! What a waste.
It really makes you wonder who's looking out for you or me or our families with MLA's not being honest to each other, do you think for one moment that they would hesitate in holding the truth back from us stupid citizens, taxpayers and voters.
I think it's about time that some of these Ministers, their assistants as well as all the people in positions to deal with families and health issues of this magnitude get out into the working trenches and visit some of these places where the work takes place day in and day out and experience it firsthand maybe it would be an awaking for them.
Brain injury is a tremendously large problem in our society, with little or no funding, I can understand all the skirting the issues when pressed, as they do not know what to say.
Wouldn’t it make sense to put people in place that care and make decisions in your best interest and especially in the positions that make these important life altering plans?
I will attach links below to get you to the CBC.
Worth saying again:
Please let everyone you know and ask them to spread the word that the CBC program GO PUBLIC will be on Tuesday January the 5th, 2010. CBC radio morning news as well as the internet at CBC.ca, where the story will be in print form with pictures and video.
Later make sure to watch the CBC evening news in BC and on the CBC National news across the country that same night.
It will be extremely important that everyone leave a comment on the CBC webpage at the end of the story, the more comments and feelings expressed the more important it will become for government to deal with.
But most of all please tell everyone you know, tell them to tell everyone they know to go to the website for CBC at the end of the story on go public about Christopher to leave their comments to leave their feelings to open up and let’s make a change together.
Thank you so much for following, thank you so much for caring, I am eternally indebted to you for your support and assistance in trying to make a change for Chris's life.
Kevin
Links:
http://www.cbc.ca/bc/
Go Public:
http://www.cbc.ca/bc/features/gopublic/
CBC News; Vancouver at 5, 5:30 and 6: Weekdays 5:00, 5:30 & 6:00 p.m
CBC Radio & TV. audio Listen live to CBC Radio 690 AM/ 88.1 FM
The point was made and hopefully people as well as the Government and health officials will take note and do the right thing and extend Chris' stay. Maybe with the wisdom that is picked up we will be able to build a place here to run therapy for brain injury, as there are hundreds and hundreds of people in our home province with brain injury and very few of them will get the rehab that is necessary for them to move forward and even have a chance at life.
Please let everyone you know and ask them to spread the word that the CBC program GO PUBLIC will be on Tuesday January the 5th, 2010. CBC radio morning news as well as the internet at CBC.ca, where the story will be in print form with pictures and video.
Later make sure to watch the CBC evening news in BC and on the CBC National news across the country that same night.
It will be extremely important that everyone leave a comment on the CBC webpage at the end of the story, the more comments and feelings expressed the more important it will become for government to deal with.
With all the distractions happening over the last month I realize that the updates for Christopher has been few and far between, just wanted to let you know this therapy is still going on strong and he still doing great, we hope to keep it that way.
But as I expected early last week we had social worker from Surrey phone the social worker in Ponoka to ask what the feeling was I guess looking for a heads up before talking to me. I told the social worker in Ponoka to have the social worker in Surrey to call me directly which he did.
The social worker from Surrey called and asked me what my feelings were about Chris coming home, what my plans were for Chris and had I thought of an extended care place I would be happy with because he could not stay in an acute care bed in the hospital when he returned.
Interesting because I believe it states you must take the first available bed and do not get a choice, which also means you can sign for acceptance and end up in a hole of a place. Then it is too late to change or do anything about it.
Here again is the health ministry working behind the scenes with smoke and mirrors spinning the plan into motion and pleading ignorance when questioned on it.
Enough said and wasted on the health system plan or lack of, it has already taken an untold amount of my time away from Christopher.
I was amazed how quickly the government can band together to suppress or pretend to have never heard something when it is needed but when asked to help or departments to work together you can feel like you are talking to a brick wall.
I proceeded to tell her that my plan was to finish therapy with Chris in June in Ponoka and have him return home, to his home to continue therapy that was designed by the therapists in Ponoka.
So it turns out exactly the way I said it would a month ago, on word that the extension was only going to be six weeks not the three months. I told those who would listen that the health ministry was looking for extended care for Chris not rehab. We have not to this day received a reason for their decision, not a call to explain, not an email in return to our requests, they tell us on one hand that they are looking into the extension and haven't made a decision yet (still waiting for more information) but they have their people already preparing for an extended care facility for Chris. Which means there will be no rehab or no further continuing of Chris's therapy to move forward basically they have put a gun to his head and said this is the end.
I do cling to the hope that there is still that small percentage of hope that they're going to change their minds come to their senses to do the right thing and provide an extension that Chris so desperately needs. But this teleconference won't take place until 11 January four days before Chris comes home.
The only MLA from all letters written to even acknowledge, was Gordon Hogg’s office from Whiterock they were concerned and said they would like to help and would check out with the health Ministry and Kevin Falcon, who is my and Christopher's MLA and get back to me. Tuesday morning they called me back to say that Mr. Falcon's office had received letters and he was aware as to what was going on and that no decision had been made, they were still waiting for more paperwork to come from Ponoka. I let Gordon Hogg’s office know that I had just been talking with the doctor in charge in Ponoka, and no such request has ever been made. For almost a month they have been telling people that they are looking into it, and taking care of it. i guess they just forgot to send the request just a minor over sight.
All of you who have read the previous blogs I have posted saw the letters from the Halvar Jonson Center in Ponoka from the Therapist, doctor and from Chris' neurologist here in Surrey. Can you all read english did any of you have trouble understanding the wording.
I have had a ten year old read it and even they understand what is being said and what Chris' best interest would be? Getting lost in all of this is that there is to be a minimum amount of therapy to be happening, just for him to survive, let alone move ahead with even the slightest chance of improving further. If Chris has to return to BC all the work we have done over the last two years was in vain, why would you save a life then walk away it makes no sense?
I don't know how you people would feel about your own MLA twisting the truth or just not being up front and honest to a fellow MLA and the Health Minister none the less, but I am appalled, I am still in shock listening to this MLA preach the word from the health ministry as if it were the truth without questioning the facts. I even gave an accounting for all the things that were being told, that were wrong but I guess because I am not their constituent it's not worth the follow up.
I really do believe though that this MLA owes an explanation to his constituent that wrote the letter, so as to answer this constituents concern.
I would think that we should all be a little concerned about our well-being.
The day before all of this transpired I was also told by the communications department in the Alberta Health Services, (which is their equivalent of our BC Health) that I would no longer be able to have CBC's cameramen or reporters or anyone from CBC set foot on Alberta Health Services property, so basically there would be no film no coverage, no story, I asked why, as it was to promote the extraordinary brain injury work being done in Ponoka, and to help everybody with an injury be informed, not just Chris I was told that Alberta has a good working relationship with BC and they didn't want to harm it, so basically BC stuck their fingers across the province line and blocked our story or tried to block our story from being told. It would seem the walls they can through at you are never ending, just think of the tax dollars being used to suppress instead of helping! What a waste.
It really makes you wonder who's looking out for you or me or our families with MLA's not being honest to each other, do you think for one moment that they would hesitate in holding the truth back from us stupid citizens, taxpayers and voters.
I think it's about time that some of these Ministers, their assistants as well as all the people in positions to deal with families and health issues of this magnitude get out into the working trenches and visit some of these places where the work takes place day in and day out and experience it firsthand maybe it would be an awaking for them.
Brain injury is a tremendously large problem in our society, with little or no funding, I can understand all the skirting the issues when pressed, as they do not know what to say.
Wouldn’t it make sense to put people in place that care and make decisions in your best interest and especially in the positions that make these important life altering plans?
I will attach links below to get you to the CBC.
Worth saying again:
Please let everyone you know and ask them to spread the word that the CBC program GO PUBLIC will be on Tuesday January the 5th, 2010. CBC radio morning news as well as the internet at CBC.ca, where the story will be in print form with pictures and video.
Later make sure to watch the CBC evening news in BC and on the CBC National news across the country that same night.
It will be extremely important that everyone leave a comment on the CBC webpage at the end of the story, the more comments and feelings expressed the more important it will become for government to deal with.
But most of all please tell everyone you know, tell them to tell everyone they know to go to the website for CBC at the end of the story on go public about Christopher to leave their comments to leave their feelings to open up and let’s make a change together.
Thank you so much for following, thank you so much for caring, I am eternally indebted to you for your support and assistance in trying to make a change for Chris's life.
Kevin
Links:
http://www.cbc.ca/bc/
Go Public:
http://www.cbc.ca/bc/features/gopublic/
CBC News; Vancouver at 5, 5:30 and 6: Weekdays 5:00, 5:30 & 6:00 p.m
CBC Radio & TV. audio Listen live to CBC Radio 690 AM/ 88.1 FM
Friday, December 18, 2009
Late Friday night
Dr R today said the ministry phoned and now wants a tele conference with the docs in Ponoka, myself and mention of Dr Jaworski because his name showed up somewhere in the original paper work, I think the social worker forgot to remove it when she sent the original request for me.
Man the cards just keep being stacked.
That Jaworski wouldn't talk to me or discuss anything going way back to the beginning ay SMH, what are the chances of him giving something constructive. He originally spoke against Chris going to rehab at all.
The good things are Chris is still doing great and the equipment trials are working out fine. Its late and I am beat waiting for a delayed flight.
So I will keep it posted as it occurs.
Thanks so very much for those of you who sat down and wrote today it will have an impact.
Kevin
Man the cards just keep being stacked.
That Jaworski wouldn't talk to me or discuss anything going way back to the beginning ay SMH, what are the chances of him giving something constructive. He originally spoke against Chris going to rehab at all.
The good things are Chris is still doing great and the equipment trials are working out fine. Its late and I am beat waiting for a delayed flight.
So I will keep it posted as it occurs.
Thanks so very much for those of you who sat down and wrote today it will have an impact.
Kevin
Friday Morning Update
Hey everyone,
Just a note to ask if you have not already, please write to you MLA, your MP, the Premier,, Health minister Kevin Falcon. Any others you can think of pass on to friends and relatives the more we flood them the tougher the decision will be to not give Chris a chance.
As you will read CBC news will do a story on Chris set to air Jan 5th.
Copy your emails or letters to any other outlet that will promote Chris' story getting out there. News papers both local and the big ones I cannot talk to any other news outlets until the story airs on the fifth but you can get out what is going on and create a need to know by the other news agencies.
Right now the government thinks it’s just them and me and what can he do.
The call I got from Surrey Social worker today confirms what I have been saying all along.
They were wondering what home I was sending Chris to as there is no room at SMH.
"They just can't wait to put Chris in An extended care facility". This even as they tell me they are reviewing their decision. His moving forward and gains we have made and right in the middle shut it down and stick him in the closet. Should make us all wonder what's in store for us, as we age or if we get injured?
In fact that was the sole purpose of the call, which by the way was made to the social worker in Ponoka prior to calling me. They wanted to find out what and how I was thinking and feeling before calling me.
I may not be a rocket scientist but it is so blatantly in your face that these politicians and their staff are underhanded never up front or honest, they will tell everyone they are listening and concerned and are addressing your concerns (while their ears are plugged) then turn around and stab you in the back.
I have told them Chris will be coming home with me when he is ready, to a house with a rehab plan built by myself with the guidance and planning with the therapists in Ponoka.
I went on to explain if they used their time helping us with this instead of trying to strong arm us into the crap they are told to do, the government and system would be saving money, time, and resources?
It is fairly obvious that someone with a plan has no place in a system that tells you how to live or conduct your life.
Please, speak up before it's too late.
I hate to ask for all of you to help, and I wouldn't if thought I could do it alone, but Chris' future and i dont want to leave anything to chance.
Thank you,
Kevin
Just a note to ask if you have not already, please write to you MLA, your MP, the Premier,, Health minister Kevin Falcon. Any others you can think of pass on to friends and relatives the more we flood them the tougher the decision will be to not give Chris a chance.
As you will read CBC news will do a story on Chris set to air Jan 5th.
Copy your emails or letters to any other outlet that will promote Chris' story getting out there. News papers both local and the big ones I cannot talk to any other news outlets until the story airs on the fifth but you can get out what is going on and create a need to know by the other news agencies.
Right now the government thinks it’s just them and me and what can he do.
The call I got from Surrey Social worker today confirms what I have been saying all along.
They were wondering what home I was sending Chris to as there is no room at SMH.
"They just can't wait to put Chris in An extended care facility". This even as they tell me they are reviewing their decision. His moving forward and gains we have made and right in the middle shut it down and stick him in the closet. Should make us all wonder what's in store for us, as we age or if we get injured?
In fact that was the sole purpose of the call, which by the way was made to the social worker in Ponoka prior to calling me. They wanted to find out what and how I was thinking and feeling before calling me.
I may not be a rocket scientist but it is so blatantly in your face that these politicians and their staff are underhanded never up front or honest, they will tell everyone they are listening and concerned and are addressing your concerns (while their ears are plugged) then turn around and stab you in the back.
I have told them Chris will be coming home with me when he is ready, to a house with a rehab plan built by myself with the guidance and planning with the therapists in Ponoka.
I went on to explain if they used their time helping us with this instead of trying to strong arm us into the crap they are told to do, the government and system would be saving money, time, and resources?
It is fairly obvious that someone with a plan has no place in a system that tells you how to live or conduct your life.
Please, speak up before it's too late.
I hate to ask for all of you to help, and I wouldn't if thought I could do it alone, but Chris' future and i dont want to leave anything to chance.
Thank you,
Kevin
Wednesday, December 16, 2009
Late December 16, 2009
Quick note just got word from lawyers office and I quote:
"Just got off the phone with the Ministry and they didn't really have any answers."
This even though they said it would be looked at on Monday, looks like it's a stalling game wait long enough and it will be too late to change what is happening.
They went on to say, "They said that the Ministry is doing a letter to Dr. R cc: Dr. D asking for more information from Ponoka. Once they receive the information they will pass that along to the medical director who will review it and then a decision will be made. I asked if we could be cc on that letter and she said no. I asked how long this would take she said she didn't know."
Talk about a disfunctional system!
Stay tuned.
"Just got off the phone with the Ministry and they didn't really have any answers."
This even though they said it would be looked at on Monday, looks like it's a stalling game wait long enough and it will be too late to change what is happening.
They went on to say, "They said that the Ministry is doing a letter to Dr. R cc: Dr. D asking for more information from Ponoka. Once they receive the information they will pass that along to the medical director who will review it and then a decision will be made. I asked if we could be cc on that letter and she said no. I asked how long this would take she said she didn't know."
Talk about a disfunctional system!
Stay tuned.
Quick update
Hey all,
Just to let you know what’s going on, heard through the lawyer today that the ministry is writing to the Doctor in Ponoka and the Doctor in Surrey asking for more information.
Having copies as requested from the therapist as well as both doctors proved to be too complicated to handle the first time around .
Obviously the first read of these reports and letters proved to not be clear enough.
You can read highlights from these letters on the previous day’s blog.
We all know how much free time, and lack of patients our Doctors have, so I am sure they wouldn't mind providing the same info two, three, maybe four times until, they who must make these complicated decisions, get an over load of information, for which they know nothing about, so they can put a spin on it, until it fits their need.
Oh wait that’s, our health care system I am talking about.
This just goes from being a simple fix, which does not take a well educated person to decipher, to being cruel and unusual punishment for Chris and our family.
I wonder how many hours or for that matter minutes have any of these politicians or their subordinates have spent in a rehab facility for people with catastrophic injuries to see what goes on, in a day in a life.
Day after day of long stressful hours trying to rebuild a person, so they may have a second chance at a life that was taken away by matters beyond their control, I think very few if any.
Will keep you informed,
Please keep your fingers crossed, because hoping and wishing may prove better than physical evidence or a trained professional's opinion.
Thank you,
Kevin
Just to let you know what’s going on, heard through the lawyer today that the ministry is writing to the Doctor in Ponoka and the Doctor in Surrey asking for more information.
Having copies as requested from the therapist as well as both doctors proved to be too complicated to handle the first time around .
Obviously the first read of these reports and letters proved to not be clear enough.
You can read highlights from these letters on the previous day’s blog.
We all know how much free time, and lack of patients our Doctors have, so I am sure they wouldn't mind providing the same info two, three, maybe four times until, they who must make these complicated decisions, get an over load of information, for which they know nothing about, so they can put a spin on it, until it fits their need.
Oh wait that’s, our health care system I am talking about.
This just goes from being a simple fix, which does not take a well educated person to decipher, to being cruel and unusual punishment for Chris and our family.
I wonder how many hours or for that matter minutes have any of these politicians or their subordinates have spent in a rehab facility for people with catastrophic injuries to see what goes on, in a day in a life.
Day after day of long stressful hours trying to rebuild a person, so they may have a second chance at a life that was taken away by matters beyond their control, I think very few if any.
Will keep you informed,
Please keep your fingers crossed, because hoping and wishing may prove better than physical evidence or a trained professional's opinion.
Thank you,
Kevin
Tuesday, December 15, 2009
Still awaiting the outcome
I will place a letter I have put out giving a little more background to Chris and his situation. Hopefully making everyone a little more informed. I would love to see people actively voice their concerns and astonishment not just with Chris but with every person in this province that is going through the same scenario as we are.
Have a read and let me know how you feel better yet let the Province and the Country now how you feel.
In the next few days I will be attempting to link twitter and facebook to the blog so as to spread the word far and wide. I have spent the last several days here at home trying to get word on Chris' extension with no success yet! It is looking good that we will be doing a piece on the CBC TV to bring to everyone’s attention the injustices that we face every day. Will keep you informed as it unfolds.
Here is the Letter:
It is a long one, followed by excerpts from Dr's and therapist's in support of Chris Staying in Pononka and continue the therapy that has been so great.
Dr. Christopher Bigelow touched so many people I had no idea just how many until all the cards and calls came after the accident, from all over the world where he practised or was a part of.
The government has made it hard in so many ways. Starting with all the red tape just so Chris could leave to get his medical education, again something they have no plan in place for in the training of doctors, at least none of any value in relation to the need. It continued the whole time he went through his studies abroad something he was forced to do if he wanted to pursue his medical education. The Provincial education system even refused to give him a student loan because the health ministry asked them to not fund any students who left Canada for their training, unbelievable. Chris did not let the obstacles get him down he fought through them never taking breaks from Medical school he worked semester after semester to get to his goal, as well as volunteering in the places he studied thinking he could make a difference.
As it would turn out all the places Chris had to travel to for training and practise would have him see and learn things never possible here at home. I remember him saying that many times that it was one of the hardest things to do, yet he would do it all over again given the chance, the people Chris came in contact with made his attitude and sense of reality very grounded and sound. It produced and even more caring person than Chris already was.
Christopher completed his Bachelor of Science degree at the University of British Columbia, and then went on with his academic studies in the Caribbean, at the American University of the Caribbean in St.Martin. BWI. While completing his medical degree he also received his Master’s of Science degree then went on to Ireland for a year to complete his medical rotations, finishing them off in Bakersfield, CA, and Vancouver BC.
Christopher then interviewed with Cottage hospital in Santa Barbara, CA. and ultimately spent three years as medical resident and Chief Resident there. Then with his need to come home and practice the government again threw obstacles in front of him which he was dealing with when this accident happened.
I am writing to expose and ultimately get us some help for my son, Dr. Christopher Bigelow, who was in a bad car accident November 3, 2007. He suffered a traumatic brain injury. He was rushed to Royal Columbian Hospital, where he spent 4 months then transferred to Surrey Memorial Hospital, where he spent 12 months. Throughout this time more so at Surrey Memorial he received very little if any physical therapy (which is key ingredient for recovery) and we were told there was nothing that could be done for him in BC by the Fraser health region.
The lack of staff and resources was the reason we were given for such little therapy. While I questioned the ability of the Physiatrist and his knowledge in treating injuries of this nature, I never received anything more than, “you should place Chris in an extended care home and walk away”, basically writing Chris off, meanwhile an excellent physical therapist who worked in the same hospital as the Physiatrist, was spending some of her own time in getting Chris to work and making some progress. Again, due to lack of funding in our medical system, Chris was not getting the quantity or quality needed. So I looked at other options for further help. But no such facilities that house therapists all together under one roof for injuries of this magnitude exist in BC. I took my son out to, Hyperbaric chamber 3 – 5 times a week this was an all day event, acupuncture until we were told only 10 sessions at reduced cost were allowed under our health plan, some of the first changes happened in the hyperbaric chamber and with acupuncture. We also tried to get into see a neuro-trained physio therapist, but found that only a few exist in the lower mainland and waiting lists are long and are not covered completely by our health plan.
I then found a place with two amazing people at an aqua-therapy in Aldergrove. Even though it was an all day trip I made sure that Chris got driven there 3 times a week and when they were short staffed I would jump in the pool and help out. My family and I were doing daily stretching with Chris to keep him limber. More things were happening all the time after the pool sessions took off. We were witness to amazing rehab and people given access to this therapy that is totally underrated. Also found that allot of these people could not be made aware of other treatments that may help by the people running this center or they risk losing their right to bill and have more clients from these sources.
I will not name so no retribution will be possible, the only reason for this suppression of knowledge would be it was going to cost the companies that were paying, even more, if the injured people find out what is out there for more help.
Then, after being turned away from all treatment possibilities in BC, we heard about Halvar Jonson centre for brain injury in Ponoka, Alberta.
After several discussions I had with the doctors in Ponoka explaining the only therapy tried, was one I had talked to doctors in California about, this was a drug trial. The Physiatrist in Surrey wanted nothing to do with it so I talked to the Neurologist about it, the Neurologist thought it had merit and put together the trial while Chris was still in the hospital in Surrey. This drug had no affect at the time, but the doctors in Ponoka knew of several drug therapies that are common place in brain injuries and still could not believe that none had been tried. They agreed to accept Chris, on a trial basis to try all of the standard things that should have been tried in our home Province but never were, frankly they were quite amazed to see nothing had been administered or tried according to basic rehab philosophy. He has been in Ponoka, AB since March 10, 2009. He was accepted and funded by our BC health for 3 months ending in June 2009.
Then I reviewed the test and results noticed that things were not as they seemed and in conjunction with the Doctor and therapists wanted to do some more trials with drugs Chris resulting in another extension due to administration of these drugs.
During this time I had researched out exercise equipment for Chris to aid in his circulation and respiratory system to avoid the pitfalls that all brain injuries encounter. To his surprise Chris started pedaling the bike on his own and again filled the center with disbelief. This then vaulted all in the rehab team to look and go further. This whole process has been filled with doubt and disbelief all of the endless pushing and fighting continues to move forward. I was able to get the letters and support of the wonderful neurologist at Surrey and was able to get an additional extension based on the things that were starting to happen in Chris and his awareness.
From the moment I started working with Chris and the new Physio therapist in Ponoka things started to open up fast and furiously which spread to other disciplines and their encouragement, wanting to work to make a change.
Now, here we are in December and the Halvar Jonson Center has suggested another extension as BC cannot accommodate Chris’ needs; physical therapy 5 ½ hours split into 7 sessions. Recreation/ aqua therapy 2 hours allotted, 4-5 hours given each week. Occupational therapy 2 hours split into 4 times a week. Nursing also is providing stretching and ranging of his joints, minimum of twice a day as well as the freedom to try of new and current drugs/medications. Our BC health system has denied his extension which means Chris will have to come home mid January and sit in a bed in extended care with no rehab once home. That is because some government employee decides it is time to end it, “just because”.
Again I have been trying through government offices and the legal system to get funds to help out with altering a house that Chris can live at home in and continue therapy the way it is supposed to be done.
But as long as no help or funds are released from the insurance or Health ministry, they’ll put him up in an extended care home take away all rehab funds then he will get to watch television all day and rot away a unbelievable human spirit which will become another statistic because that’s what governments are good at keeping numbers but not helping.
I have been looking for a suitable house for over ten months now and the plan is to bring Chris back and have him live at home close to family and friends. The house will have to be adapted for wheelchair accessible and other necessities for Chris. Then we need nursing staff/aids and therapists. All of the programs just drag their feet hoping the requests will stop most of the time you are told such programs do not exist, until you come across someone who is willing to share that they have a program that is funded or provided by a particular agency.
If our province continued their support for Chris in Ponoka, because there is no place in BC that provides this treatment and the government has acknowledged this, then Chris’ recovery and progress will have a chance to continue daily. This will also give us time to get all the things in order here at home so he could come home and step into a rehab program designed by the therapists in Alberta and myself. He will then be close to friends and family. Currently, I am commuting weekly back and forth to Edmonton to be with Chris and provide the things that are not done or covered by health care. Just as things start to come together and progress is being made the government is deciding to pull support away even though they cannot provide it in our own Province. The cost is basically the same whether Chris is in Alberta or in Surrey a difference of $28.00 a day which we offered to pay, somehow.
The Halvar Jonson center in Ponoka, Alberta provides access to all the therapies and doctors as well as 24 hour care all brought together under one roof, or he could be in a hospital bed in Surrey with no therapy and no plan or future.
All of the senior doctors Chris worked with whether in the Caribbean, Ireland, Vancouver, Bakersfield, Los Angeles or Santa Barbara will attest to his unrelenting passion in the pursuit of medicine. The praise was endless and any one of them would tell of his unique qualities in dealing with people. Chris is a person with a caring loving attitude towards all and his endless pursuit of knowledge always wanting to be on the cutting edge of new research.
For the last two years since his accident, he has become a victim of the very system that he wanted to come back and help by being a part of, even with all the crap put in front of him.
It is very frustrating I would love to tell his story but from the beginning not just the accident, people would then realize just how awful the system treats our own. Then turns around and tells the public about all it's doing to make things better.
All I want is to give Chris the best rehab possible and give him every chance to pull through this he deserves that much considering he survived through 6% that live after an injury like this and survived the 3% that survive after the first year of that 6%. He is a fighter and if given the chance will make every effort to succeed. In a nut shell that is what I want to get out, let people know what is really going to happen if you are injured and need help. Imagine those who do not have anyone there to fight every step of the way? They end up in extended care home in front of a TV set because it is the cheapest for the Government to do.
We the family and friends of Dr. Christopher Bigelow would appreciate and be eternally grateful for whatever help or assistance you could provide.
Kevin Bigelow,
Christopher’s Father
Excerpts from Dr. R
HALVAR JONSON CENTRE FOR BRAIN INJURY
November 3, 2009
British Columbia Ministry of Health Planning
Ministry of Health Services
Regional Commitment Payments and Support
Out of Province Claims ‘
Victoria, BC
Attention: Lolanda Emerson
As of August Dr. Bigelow was finally on an adequate dose of the last possible medication to be tried, namely lamotrigine. This intervention also stopped his frequent epileptic seizures and since then he has very slowly, but definitely, started to follow simple and repeated verbal commands in specially designed sessions usually in cooperation between physiotherapy and occupational therapy.
Within the next two months (i.e., by the end of October 2009), he achieved the ability to use his left upper extremity (LUE) to identify playing cards, their suits, and numbers, and he demonstrated that he could do simple math such as addition or subtraction He will also answer yes or no to simple questions.
As of this date, Dr. Bigelow is receiving the attention of OT (occupational therapy) for 2 hours/week broken into four sessions, PT (physical therapy) for 51/2 hours/week in seven sessions, RT (recreation therapy) for 2 hours/week for two swimming pool sessions plus 3 extra hours of swimming with his father (who also participates in swimming sessions with RT), adult Education Centre for 2 hours/week, and several hours a day of heavy nursing care. This rehabilitation nursing also includes regular ranging of his joints and stretching muscles minimally twice a day.
As a result of the above described attention in the last month, Dr. Bigelow has also increased his responsiveness to nursing staff who now also report witnessing his attempts of communication with them using yes/no responses with his left hand thumb pointing up for “yes” and closing the left ,and fist for “no”.
Based on this outcome, all the staff involved in Dr. Bigelow’s care are now advocating that their interactions continue with the hope that it will maintain his current physiologic and motor status as well as to hopefully further potentiate his ongoing improvements in his ability to interact with his environment.
In summary, I can report that the effort of the past 8 months resulted in changes in Dr. Bigelow’s ability to meaningfully interact with his environment. While this may lead to some improvement in the quality of his life. I recommend that OT, PT, S-LP and RT should be involved in designing and follow-up of such maintenance programs that are based on the level of function that has been achieved at HJCBI. Hopefully this should be available in his home province of British Columbia once he relocates to his permanent residence there. It is my opinion that this level of care and ongoing stimulation does not necessarily require the expertise of HJCBI. However, as HJCBI presently is not experiencing pressure for its available resources, and should the BC Ministry of Health continue to approve financing for Dr. Bigelow’s out of province treatment, then Mr. Bigelow is welcome to continue to receive the attention of this facility and its staff.
Regardless of any possible extension in his stay at HJCBI, he will be returning to BC to a permanent residential setting.
Physician
Halvar Jonson Centre for Brain injury
Alberta. Health Services
To:
British Columbia
Ministry of Health Planning
Ministry of Health Services, Regional
Commitment Payments and Support
Out of Province Claims
Christopher Bigelow is presently in the Halvar Jonson Centre for Brain Injury at The Centennial Centre for Mental Health and Brain Injury, Ponoka, Alberta. It is the opinion of the physician and treatment team members that Christopher:
• Continues to benefit from ongoing rehabilitation and a discharge date has not been set.
Physician
Halvar Jonson Centre for Brain injury
Excerpts from Dr. D November 27, 2009
Re: Bigelow Chris
To Whom it May Concern,
I have reviewed the progress notes and letters supplied to me by Dr. Rosenkranz of the Ponoka facility currently housing Dr. Bigelow: I have not examined this patient since the time he left British Columbia.
However, I have a great deal of confidence in Dr. Rosenkranz’s observations, and feel that based on those observations, he is drawing the correct implications for Dr. Bigelow’s prognosis and treatment plan.
I would agree with Dr. Rosenkranz’s recommendations - if there is no similar facility in British Columbia and no imminent need to utilize the Ponoka facility for a higher-needs patient, Dr. Bigelow would be most appropriately maintained at the Ponoka facility.
Dr. D Bsc, MD, CSCN, FRCPC
Neurology, Surrey Memorial Hospital
Clinical Assistant Professor, Neurology
University of British Columbia
November 27, 2009
Ms. Lee Cave
Ministry of health services
Out of Province Claims
2-1, 1515 Blanchard Street, Victoria, B.C. V8W 3C8
Tel 1-250-952-1940
Fax: 1-250-952-1334
Re: Dr. Bigelow, Chris.
Dear Ms. Cave:
As you are aware, Dr. Bigelow sustained a traumatic brain injury in a motor vehicle accident on November 3, 2007. At this time Dr. Bigelow is in Halvar Jonson Center for brain injury in Ponoka. I am writing this letter to support Dr. Bigleow’s extended stay in Ponoka, Alberta.
He is receiving aggressive rehabilitation for his traumatic brain injury and, according to his treating physiatrist, has made moderate gains in his functional status. Based on these gains, which have translated into functional improvement by all accounts, I would fully recommend an extended stay at the Halvar Jonson Center.
Sincerley,
Dr. D Bsc, MD, CSCN, FRCPC
Excerpts from Physio
Progress Report Novernber 10, 2009
Attendance and Participation:
Dr. Bigelow is scheduled for five – six 60-minute active PT sessions per week in addition to a morning stretching program 5 times per week.
Tracking from October 15, 2009 November 10. 2009 revealed he was alert and participated in 16/19 (84%) of his active treatment sessions.
Dr. Bigelow’s father attends PT regularly and receives information at that time. He is an active participant in his sessions.
Motor Control:
Left Upper Extremity:
Mr. Bigelow demonstrates his greatest control and active movement in this extremity. At present all movements lack the strength. Timing and target accuracy to be used in functional activities. Mr. Bigelow does demonstrate active movement at all joints in the left upper extremity. Controlling. The active movement in this arm continues to be challenging for Mr. Bigelow. Presently, with his hand supported on a table and his elbow positioned and stabilised ahead of his shoulder. He can slide his arm towards a, target placed on the table in the directions of shoulder flexion, extension, internal and external rotation. All movements are completed in short 1-2cm movements and lack target accuracy.
When supported in sitting at a table, Mr. Bigelow has been successful in using. Shoulder internal and external rotation to respond to yes/no questions using his left hand to touch an X or check mark.
Left Lower Extremity: Mr. Bigelow demonstrates the ability to activate most muscle Groups around the hip and knee. Coordination and recruitment accuracy remain poor and strength presently is <2-/5. He is noted to actively recruit his hip extensors in supported sitting as a balance strategy.
Assessment and Treatment Recommendations:
Over the past month Mr. Bigelow has been alert and participated well in 84% of his PT sessions. He continues to demonstrate an increased ability to actively control the movements of his left arm and hand and is working towards accessing simple switches with OT and Speech Language Pathology. Vhen positioned on the tilt table or in . iupported sitting he continues to be able to utilise his left arm in communication through thesetection ofYes/No. OT continues to explore modifications to his headrest in hopes I hat he will be able to utilise his arm and hand more effectively in his wheelchair
At this time Mr. Bigelow is continuing to benefit from a multidisciplinary approach to his rehabilitation. PT. OT and Speech Language Pathology are presently exploring different seating options (head. Rest and lap tray) to aid Mr. Bigelow in sitting upright in his wheelchair. Also with his increased ability to consistently produce active movement in his left arm and hand accessing simple environmental controls (switches) may soon be .n option for Mr. Bigelow.
Conversely, failure to receive adequate services, weather in the community or in an institutional setting will have a detrimental effect on Mr. Bigelow’s systemic health particularly in the areas of contracture management and protection of his respiratory health. This in turn will result in an increase in both caregiver burden and his need to access acute care services in the future.
Treatment Plan:
Mr. Bigelow will continue to attend five to six active (tilt table and supported sitting) PT sessions per week to work on increasing strength in his left arm and hand and to work on head control. He will also continue to receive 5 stretching sessions per week to maintain passive range of motion. Collaboration with OT and SLP is ongoing.
BScPT
Have a read and let me know how you feel better yet let the Province and the Country now how you feel.
In the next few days I will be attempting to link twitter and facebook to the blog so as to spread the word far and wide. I have spent the last several days here at home trying to get word on Chris' extension with no success yet! It is looking good that we will be doing a piece on the CBC TV to bring to everyone’s attention the injustices that we face every day. Will keep you informed as it unfolds.
Here is the Letter:
It is a long one, followed by excerpts from Dr's and therapist's in support of Chris Staying in Pononka and continue the therapy that has been so great.
Dr. Christopher Bigelow touched so many people I had no idea just how many until all the cards and calls came after the accident, from all over the world where he practised or was a part of.
The government has made it hard in so many ways. Starting with all the red tape just so Chris could leave to get his medical education, again something they have no plan in place for in the training of doctors, at least none of any value in relation to the need. It continued the whole time he went through his studies abroad something he was forced to do if he wanted to pursue his medical education. The Provincial education system even refused to give him a student loan because the health ministry asked them to not fund any students who left Canada for their training, unbelievable. Chris did not let the obstacles get him down he fought through them never taking breaks from Medical school he worked semester after semester to get to his goal, as well as volunteering in the places he studied thinking he could make a difference.
As it would turn out all the places Chris had to travel to for training and practise would have him see and learn things never possible here at home. I remember him saying that many times that it was one of the hardest things to do, yet he would do it all over again given the chance, the people Chris came in contact with made his attitude and sense of reality very grounded and sound. It produced and even more caring person than Chris already was.
Christopher completed his Bachelor of Science degree at the University of British Columbia, and then went on with his academic studies in the Caribbean, at the American University of the Caribbean in St.Martin. BWI. While completing his medical degree he also received his Master’s of Science degree then went on to Ireland for a year to complete his medical rotations, finishing them off in Bakersfield, CA, and Vancouver BC.
Christopher then interviewed with Cottage hospital in Santa Barbara, CA. and ultimately spent three years as medical resident and Chief Resident there. Then with his need to come home and practice the government again threw obstacles in front of him which he was dealing with when this accident happened.
I am writing to expose and ultimately get us some help for my son, Dr. Christopher Bigelow, who was in a bad car accident November 3, 2007. He suffered a traumatic brain injury. He was rushed to Royal Columbian Hospital, where he spent 4 months then transferred to Surrey Memorial Hospital, where he spent 12 months. Throughout this time more so at Surrey Memorial he received very little if any physical therapy (which is key ingredient for recovery) and we were told there was nothing that could be done for him in BC by the Fraser health region.
The lack of staff and resources was the reason we were given for such little therapy. While I questioned the ability of the Physiatrist and his knowledge in treating injuries of this nature, I never received anything more than, “you should place Chris in an extended care home and walk away”, basically writing Chris off, meanwhile an excellent physical therapist who worked in the same hospital as the Physiatrist, was spending some of her own time in getting Chris to work and making some progress. Again, due to lack of funding in our medical system, Chris was not getting the quantity or quality needed. So I looked at other options for further help. But no such facilities that house therapists all together under one roof for injuries of this magnitude exist in BC. I took my son out to, Hyperbaric chamber 3 – 5 times a week this was an all day event, acupuncture until we were told only 10 sessions at reduced cost were allowed under our health plan, some of the first changes happened in the hyperbaric chamber and with acupuncture. We also tried to get into see a neuro-trained physio therapist, but found that only a few exist in the lower mainland and waiting lists are long and are not covered completely by our health plan.
I then found a place with two amazing people at an aqua-therapy in Aldergrove. Even though it was an all day trip I made sure that Chris got driven there 3 times a week and when they were short staffed I would jump in the pool and help out. My family and I were doing daily stretching with Chris to keep him limber. More things were happening all the time after the pool sessions took off. We were witness to amazing rehab and people given access to this therapy that is totally underrated. Also found that allot of these people could not be made aware of other treatments that may help by the people running this center or they risk losing their right to bill and have more clients from these sources.
I will not name so no retribution will be possible, the only reason for this suppression of knowledge would be it was going to cost the companies that were paying, even more, if the injured people find out what is out there for more help.
Then, after being turned away from all treatment possibilities in BC, we heard about Halvar Jonson centre for brain injury in Ponoka, Alberta.
After several discussions I had with the doctors in Ponoka explaining the only therapy tried, was one I had talked to doctors in California about, this was a drug trial. The Physiatrist in Surrey wanted nothing to do with it so I talked to the Neurologist about it, the Neurologist thought it had merit and put together the trial while Chris was still in the hospital in Surrey. This drug had no affect at the time, but the doctors in Ponoka knew of several drug therapies that are common place in brain injuries and still could not believe that none had been tried. They agreed to accept Chris, on a trial basis to try all of the standard things that should have been tried in our home Province but never were, frankly they were quite amazed to see nothing had been administered or tried according to basic rehab philosophy. He has been in Ponoka, AB since March 10, 2009. He was accepted and funded by our BC health for 3 months ending in June 2009.
Then I reviewed the test and results noticed that things were not as they seemed and in conjunction with the Doctor and therapists wanted to do some more trials with drugs Chris resulting in another extension due to administration of these drugs.
During this time I had researched out exercise equipment for Chris to aid in his circulation and respiratory system to avoid the pitfalls that all brain injuries encounter. To his surprise Chris started pedaling the bike on his own and again filled the center with disbelief. This then vaulted all in the rehab team to look and go further. This whole process has been filled with doubt and disbelief all of the endless pushing and fighting continues to move forward. I was able to get the letters and support of the wonderful neurologist at Surrey and was able to get an additional extension based on the things that were starting to happen in Chris and his awareness.
From the moment I started working with Chris and the new Physio therapist in Ponoka things started to open up fast and furiously which spread to other disciplines and their encouragement, wanting to work to make a change.
Now, here we are in December and the Halvar Jonson Center has suggested another extension as BC cannot accommodate Chris’ needs; physical therapy 5 ½ hours split into 7 sessions. Recreation/ aqua therapy 2 hours allotted, 4-5 hours given each week. Occupational therapy 2 hours split into 4 times a week. Nursing also is providing stretching and ranging of his joints, minimum of twice a day as well as the freedom to try of new and current drugs/medications. Our BC health system has denied his extension which means Chris will have to come home mid January and sit in a bed in extended care with no rehab once home. That is because some government employee decides it is time to end it, “just because”.
Again I have been trying through government offices and the legal system to get funds to help out with altering a house that Chris can live at home in and continue therapy the way it is supposed to be done.
But as long as no help or funds are released from the insurance or Health ministry, they’ll put him up in an extended care home take away all rehab funds then he will get to watch television all day and rot away a unbelievable human spirit which will become another statistic because that’s what governments are good at keeping numbers but not helping.
I have been looking for a suitable house for over ten months now and the plan is to bring Chris back and have him live at home close to family and friends. The house will have to be adapted for wheelchair accessible and other necessities for Chris. Then we need nursing staff/aids and therapists. All of the programs just drag their feet hoping the requests will stop most of the time you are told such programs do not exist, until you come across someone who is willing to share that they have a program that is funded or provided by a particular agency.
If our province continued their support for Chris in Ponoka, because there is no place in BC that provides this treatment and the government has acknowledged this, then Chris’ recovery and progress will have a chance to continue daily. This will also give us time to get all the things in order here at home so he could come home and step into a rehab program designed by the therapists in Alberta and myself. He will then be close to friends and family. Currently, I am commuting weekly back and forth to Edmonton to be with Chris and provide the things that are not done or covered by health care. Just as things start to come together and progress is being made the government is deciding to pull support away even though they cannot provide it in our own Province. The cost is basically the same whether Chris is in Alberta or in Surrey a difference of $28.00 a day which we offered to pay, somehow.
The Halvar Jonson center in Ponoka, Alberta provides access to all the therapies and doctors as well as 24 hour care all brought together under one roof, or he could be in a hospital bed in Surrey with no therapy and no plan or future.
All of the senior doctors Chris worked with whether in the Caribbean, Ireland, Vancouver, Bakersfield, Los Angeles or Santa Barbara will attest to his unrelenting passion in the pursuit of medicine. The praise was endless and any one of them would tell of his unique qualities in dealing with people. Chris is a person with a caring loving attitude towards all and his endless pursuit of knowledge always wanting to be on the cutting edge of new research.
For the last two years since his accident, he has become a victim of the very system that he wanted to come back and help by being a part of, even with all the crap put in front of him.
It is very frustrating I would love to tell his story but from the beginning not just the accident, people would then realize just how awful the system treats our own. Then turns around and tells the public about all it's doing to make things better.
All I want is to give Chris the best rehab possible and give him every chance to pull through this he deserves that much considering he survived through 6% that live after an injury like this and survived the 3% that survive after the first year of that 6%. He is a fighter and if given the chance will make every effort to succeed. In a nut shell that is what I want to get out, let people know what is really going to happen if you are injured and need help. Imagine those who do not have anyone there to fight every step of the way? They end up in extended care home in front of a TV set because it is the cheapest for the Government to do.
We the family and friends of Dr. Christopher Bigelow would appreciate and be eternally grateful for whatever help or assistance you could provide.
Kevin Bigelow,
Christopher’s Father
Excerpts from Dr. R
HALVAR JONSON CENTRE FOR BRAIN INJURY
November 3, 2009
British Columbia Ministry of Health Planning
Ministry of Health Services
Regional Commitment Payments and Support
Out of Province Claims ‘
Victoria, BC
Attention: Lolanda Emerson
As of August Dr. Bigelow was finally on an adequate dose of the last possible medication to be tried, namely lamotrigine. This intervention also stopped his frequent epileptic seizures and since then he has very slowly, but definitely, started to follow simple and repeated verbal commands in specially designed sessions usually in cooperation between physiotherapy and occupational therapy.
Within the next two months (i.e., by the end of October 2009), he achieved the ability to use his left upper extremity (LUE) to identify playing cards, their suits, and numbers, and he demonstrated that he could do simple math such as addition or subtraction He will also answer yes or no to simple questions.
As of this date, Dr. Bigelow is receiving the attention of OT (occupational therapy) for 2 hours/week broken into four sessions, PT (physical therapy) for 51/2 hours/week in seven sessions, RT (recreation therapy) for 2 hours/week for two swimming pool sessions plus 3 extra hours of swimming with his father (who also participates in swimming sessions with RT), adult Education Centre for 2 hours/week, and several hours a day of heavy nursing care. This rehabilitation nursing also includes regular ranging of his joints and stretching muscles minimally twice a day.
As a result of the above described attention in the last month, Dr. Bigelow has also increased his responsiveness to nursing staff who now also report witnessing his attempts of communication with them using yes/no responses with his left hand thumb pointing up for “yes” and closing the left ,and fist for “no”.
Based on this outcome, all the staff involved in Dr. Bigelow’s care are now advocating that their interactions continue with the hope that it will maintain his current physiologic and motor status as well as to hopefully further potentiate his ongoing improvements in his ability to interact with his environment.
In summary, I can report that the effort of the past 8 months resulted in changes in Dr. Bigelow’s ability to meaningfully interact with his environment. While this may lead to some improvement in the quality of his life. I recommend that OT, PT, S-LP and RT should be involved in designing and follow-up of such maintenance programs that are based on the level of function that has been achieved at HJCBI. Hopefully this should be available in his home province of British Columbia once he relocates to his permanent residence there. It is my opinion that this level of care and ongoing stimulation does not necessarily require the expertise of HJCBI. However, as HJCBI presently is not experiencing pressure for its available resources, and should the BC Ministry of Health continue to approve financing for Dr. Bigelow’s out of province treatment, then Mr. Bigelow is welcome to continue to receive the attention of this facility and its staff.
Regardless of any possible extension in his stay at HJCBI, he will be returning to BC to a permanent residential setting.
Physician
Halvar Jonson Centre for Brain injury
Alberta. Health Services
To:
British Columbia
Ministry of Health Planning
Ministry of Health Services, Regional
Commitment Payments and Support
Out of Province Claims
Christopher Bigelow is presently in the Halvar Jonson Centre for Brain Injury at The Centennial Centre for Mental Health and Brain Injury, Ponoka, Alberta. It is the opinion of the physician and treatment team members that Christopher:
• Continues to benefit from ongoing rehabilitation and a discharge date has not been set.
Physician
Halvar Jonson Centre for Brain injury
Excerpts from Dr. D November 27, 2009
Re: Bigelow Chris
To Whom it May Concern,
I have reviewed the progress notes and letters supplied to me by Dr. Rosenkranz of the Ponoka facility currently housing Dr. Bigelow: I have not examined this patient since the time he left British Columbia.
However, I have a great deal of confidence in Dr. Rosenkranz’s observations, and feel that based on those observations, he is drawing the correct implications for Dr. Bigelow’s prognosis and treatment plan.
I would agree with Dr. Rosenkranz’s recommendations - if there is no similar facility in British Columbia and no imminent need to utilize the Ponoka facility for a higher-needs patient, Dr. Bigelow would be most appropriately maintained at the Ponoka facility.
Dr. D Bsc, MD, CSCN, FRCPC
Neurology, Surrey Memorial Hospital
Clinical Assistant Professor, Neurology
University of British Columbia
November 27, 2009
Ms. Lee Cave
Ministry of health services
Out of Province Claims
2-1, 1515 Blanchard Street, Victoria, B.C. V8W 3C8
Tel 1-250-952-1940
Fax: 1-250-952-1334
Re: Dr. Bigelow, Chris.
Dear Ms. Cave:
As you are aware, Dr. Bigelow sustained a traumatic brain injury in a motor vehicle accident on November 3, 2007. At this time Dr. Bigelow is in Halvar Jonson Center for brain injury in Ponoka. I am writing this letter to support Dr. Bigleow’s extended stay in Ponoka, Alberta.
He is receiving aggressive rehabilitation for his traumatic brain injury and, according to his treating physiatrist, has made moderate gains in his functional status. Based on these gains, which have translated into functional improvement by all accounts, I would fully recommend an extended stay at the Halvar Jonson Center.
Sincerley,
Dr. D Bsc, MD, CSCN, FRCPC
Excerpts from Physio
Progress Report Novernber 10, 2009
Attendance and Participation:
Dr. Bigelow is scheduled for five – six 60-minute active PT sessions per week in addition to a morning stretching program 5 times per week.
Tracking from October 15, 2009 November 10. 2009 revealed he was alert and participated in 16/19 (84%) of his active treatment sessions.
Dr. Bigelow’s father attends PT regularly and receives information at that time. He is an active participant in his sessions.
Motor Control:
Left Upper Extremity:
Mr. Bigelow demonstrates his greatest control and active movement in this extremity. At present all movements lack the strength. Timing and target accuracy to be used in functional activities. Mr. Bigelow does demonstrate active movement at all joints in the left upper extremity. Controlling. The active movement in this arm continues to be challenging for Mr. Bigelow. Presently, with his hand supported on a table and his elbow positioned and stabilised ahead of his shoulder. He can slide his arm towards a, target placed on the table in the directions of shoulder flexion, extension, internal and external rotation. All movements are completed in short 1-2cm movements and lack target accuracy.
When supported in sitting at a table, Mr. Bigelow has been successful in using. Shoulder internal and external rotation to respond to yes/no questions using his left hand to touch an X or check mark.
Left Lower Extremity: Mr. Bigelow demonstrates the ability to activate most muscle Groups around the hip and knee. Coordination and recruitment accuracy remain poor and strength presently is <2-/5. He is noted to actively recruit his hip extensors in supported sitting as a balance strategy.
Assessment and Treatment Recommendations:
Over the past month Mr. Bigelow has been alert and participated well in 84% of his PT sessions. He continues to demonstrate an increased ability to actively control the movements of his left arm and hand and is working towards accessing simple switches with OT and Speech Language Pathology. Vhen positioned on the tilt table or in . iupported sitting he continues to be able to utilise his left arm in communication through thesetection ofYes/No. OT continues to explore modifications to his headrest in hopes I hat he will be able to utilise his arm and hand more effectively in his wheelchair
At this time Mr. Bigelow is continuing to benefit from a multidisciplinary approach to his rehabilitation. PT. OT and Speech Language Pathology are presently exploring different seating options (head. Rest and lap tray) to aid Mr. Bigelow in sitting upright in his wheelchair. Also with his increased ability to consistently produce active movement in his left arm and hand accessing simple environmental controls (switches) may soon be .n option for Mr. Bigelow.
Conversely, failure to receive adequate services, weather in the community or in an institutional setting will have a detrimental effect on Mr. Bigelow’s systemic health particularly in the areas of contracture management and protection of his respiratory health. This in turn will result in an increase in both caregiver burden and his need to access acute care services in the future.
Treatment Plan:
Mr. Bigelow will continue to attend five to six active (tilt table and supported sitting) PT sessions per week to work on increasing strength in his left arm and hand and to work on head control. He will also continue to receive 5 stretching sessions per week to maintain passive range of motion. Collaboration with OT and SLP is ongoing.
BScPT
Tuesday, December 1, 2009
Short Info message
Hello everyone,
Just a quick update to Chris' situation, the health ministry had suggested that they would find a place in BC that Chris would come back to so as to continue the amount of therapy he was getting in Alberta.
Let’s remember that they approved Chris' going there because nothing was even remotely plausible here in BC. So I was very sceptical about where they had in mind. The letter to Alberta basically says he get six weeks so that they (BC) can find a placement for him. The term placement usually refers to extended care just as they tried before we went to Alberta. We have been told that when he comes back that is the only alternative and if I don’t agree to it I will be charged the $1000.00 per day for every day I refuse to place him there.
Even though they have doctors letters from Ponoka, Therapist letters and reports from Ponoka and Letter from the Neurologist that treated Chris while here in Surrey all recommending that he remain and continue at the level of treatment he is now getting. It took 2 years to find a therapist that Chris connected to and is responding to and now they the government will bring him home paying no attention to the expert advice, makes you wonder if they see it as he will require the sustained therapy and therefore cost more money than an extended care facility?
The kicker here is it is almost the exact same cost for Chris to be in a first class Rehabilitation hospital with almost everything he needs every day intense therapy and access to whatever else we need. The alternative is to come home and lie in a bed and stare at a TV having someone check on you every four hours. Gee don't think it takes a college education to figure out the difference. It would seem that only BC trained professionals can see the benefit to not continuing in Alberta.
But the Government thinks they can do better, why then did such a place not exist for the last two years prompting our journey off to Alberta for the last eight months. As well more brain injured patients arrive from BC all the time because no place exists.
Someone here is lying and not acting in good faith or looking out for Chris' rights or best interests, Chris did not ask for this, I did not want this, we are trying out hardest to make the best of what we have and make it count. We have taken nothing for granted and asked for nothing out of the ordinary. There was car insurance that the government controls and yet we cannot access any of that or expect to without a fight. I am slowly tiring of the fighting I just want to work with my son and give him every opportunity to fight his way through this nightmare and believe me it is. I am going to need all of you who can write a little note to your, MLA and MP and or drop a line to the paper or television station you watch. I still believe the only way to get help at this point is to embarrass the government in its bungling of handling this and get the word out as fast and wide spread as possible. Maybe in doing so it won't be just Chris that benefits maybe we can change it for all those affected by this arrogant and inept way of dealing with human life. Tell them your disgust of the treatment and red tape crap, they need to step forward and help resolve the injustice that is taking place.
Below are some contacts that may make it easier for you to help.
A heartfelt "Thank You" of our appreciation,
Kevin & Christopher
And all those who will benefit from our pain and effort to bring change.
The Sun Newspaper:
To submit letters to the editor for publication in The Vancouver Sun newspaper: sunletters@vancouversun.com.
Ng, Juanita - Life Editor jng@vancouversun.com
The Province Paper:
To alert us to a news story, e-mail us at: tabtips@theprovince.com, or call 604-605-2030, toll-free at 1-866-368-5888 or Fax: 604-605-2759
Kevin Falcon: He is even in our represented area!
Honourable Kevin Falcon
Kevin Falcon was first elected in 2001 to represent the riding of Surrey-Cloverdale, and was re-elected in 2005 and 2009. He initially served as minister of state for deregulation
He previously served as Minister of Transportation since January 26, 2004, overseeing a capital program that included the Kicking Horse Canyon, the Sea-to-Sky Highway and the William R. Bennett Bridge, among many others.
Minister Falcon's leadership recently earned him recognition in Vancouver Magazine’s annual ranking of the city’s 50 most influential leaders.
Before his election to the Legislative Assembly in 2001, he was president of Access Group, a corporate communications firm he founded in 1998. He has also worked in the real estate development industry and was vice-president of Northwest Investment Properties. He received his bachelor of arts degree from Simon Fraser University, and his real estate education at the University of British Columbia.
Quite a story do you think he will help?
Kevin.Falcon@gov.bc.ca 250-953-3547
Our beloved premier lets see how much he really cares about the people of BC?
Gordon Campbell:
Premier Campbell was Mayor of Vancouver for three successive terms from 1986 to 1993. Prior to that, he was a developer. He served for two years under CUSO as a secondary school teacher in Nigeria, Africa. Premier Campbell is married to wife Nancy, a high school principal, they have two sons and two grandchildren.
I wonder if one of his children or grandchildren were in this situation would he help out.
Gordon.Campbell.MLA@leg.bc.ca, 250-387-1715
P.S.You may also want to contact local papers as well.
Thanks
Just a quick update to Chris' situation, the health ministry had suggested that they would find a place in BC that Chris would come back to so as to continue the amount of therapy he was getting in Alberta.
Let’s remember that they approved Chris' going there because nothing was even remotely plausible here in BC. So I was very sceptical about where they had in mind. The letter to Alberta basically says he get six weeks so that they (BC) can find a placement for him. The term placement usually refers to extended care just as they tried before we went to Alberta. We have been told that when he comes back that is the only alternative and if I don’t agree to it I will be charged the $1000.00 per day for every day I refuse to place him there.
Even though they have doctors letters from Ponoka, Therapist letters and reports from Ponoka and Letter from the Neurologist that treated Chris while here in Surrey all recommending that he remain and continue at the level of treatment he is now getting. It took 2 years to find a therapist that Chris connected to and is responding to and now they the government will bring him home paying no attention to the expert advice, makes you wonder if they see it as he will require the sustained therapy and therefore cost more money than an extended care facility?
The kicker here is it is almost the exact same cost for Chris to be in a first class Rehabilitation hospital with almost everything he needs every day intense therapy and access to whatever else we need. The alternative is to come home and lie in a bed and stare at a TV having someone check on you every four hours. Gee don't think it takes a college education to figure out the difference. It would seem that only BC trained professionals can see the benefit to not continuing in Alberta.
But the Government thinks they can do better, why then did such a place not exist for the last two years prompting our journey off to Alberta for the last eight months. As well more brain injured patients arrive from BC all the time because no place exists.
Someone here is lying and not acting in good faith or looking out for Chris' rights or best interests, Chris did not ask for this, I did not want this, we are trying out hardest to make the best of what we have and make it count. We have taken nothing for granted and asked for nothing out of the ordinary. There was car insurance that the government controls and yet we cannot access any of that or expect to without a fight. I am slowly tiring of the fighting I just want to work with my son and give him every opportunity to fight his way through this nightmare and believe me it is. I am going to need all of you who can write a little note to your, MLA and MP and or drop a line to the paper or television station you watch. I still believe the only way to get help at this point is to embarrass the government in its bungling of handling this and get the word out as fast and wide spread as possible. Maybe in doing so it won't be just Chris that benefits maybe we can change it for all those affected by this arrogant and inept way of dealing with human life. Tell them your disgust of the treatment and red tape crap, they need to step forward and help resolve the injustice that is taking place.
Below are some contacts that may make it easier for you to help.
A heartfelt "Thank You" of our appreciation,
Kevin & Christopher
And all those who will benefit from our pain and effort to bring change.
The Sun Newspaper:
To submit letters to the editor for publication in The Vancouver Sun newspaper: sunletters@vancouversun.com.
Ng, Juanita - Life Editor jng@vancouversun.com
The Province Paper:
To alert us to a news story, e-mail us at: tabtips@theprovince.com, or call 604-605-2030, toll-free at 1-866-368-5888 or Fax: 604-605-2759
Kevin Falcon: He is even in our represented area!
Honourable Kevin Falcon
Kevin Falcon was first elected in 2001 to represent the riding of Surrey-Cloverdale, and was re-elected in 2005 and 2009. He initially served as minister of state for deregulation
He previously served as Minister of Transportation since January 26, 2004, overseeing a capital program that included the Kicking Horse Canyon, the Sea-to-Sky Highway and the William R. Bennett Bridge, among many others.
Minister Falcon's leadership recently earned him recognition in Vancouver Magazine’s annual ranking of the city’s 50 most influential leaders.
Before his election to the Legislative Assembly in 2001, he was president of Access Group, a corporate communications firm he founded in 1998. He has also worked in the real estate development industry and was vice-president of Northwest Investment Properties. He received his bachelor of arts degree from Simon Fraser University, and his real estate education at the University of British Columbia.
Quite a story do you think he will help?
Kevin.Falcon@gov.bc.ca 250-953-3547
Our beloved premier lets see how much he really cares about the people of BC?
Gordon Campbell:
Premier Campbell was Mayor of Vancouver for three successive terms from 1986 to 1993. Prior to that, he was a developer. He served for two years under CUSO as a secondary school teacher in Nigeria, Africa. Premier Campbell is married to wife Nancy, a high school principal, they have two sons and two grandchildren.
I wonder if one of his children or grandchildren were in this situation would he help out.
Gordon.Campbell.MLA@leg.bc.ca, 250-387-1715
P.S.You may also want to contact local papers as well.
Thanks
Friday, November 27, 2009
Friday November 27, 2009
Hello everyone,
I have been waiting on edge to get confirmation of our health ministry's approval for Chris' stay for another 3 months based on all the success we have had. All day I have been on the phone with the Lawyer and the ministry office. All the paper work had to be sent twice as the ministry could not find or did not get it. With panic running wild the letter from Chris' neurologist in Surrey was sent direct this afternoon only to be told she could not or does not make the decision on the extension. Just before leaving Chris' room this afternoon I got word from the lawyer's office who have been doing all the leg work at home while I am in Ponoka, that the ministry was only going to extend the stay for six weeks??????
The only explanation we have until a letter is sent, is that there must be a place in BC where he should be able to get the same treatment!!!!!!!!!!!!!!! What a screwed up system.
This is the same government that would not, could not place Chris anywhere to get rehab last year. Upon applying for support to go to Ponoka I was then told I would have to write them and explain why I wanted to go to Ponoka? Right hand doesn't know what the left hand is doing.
We have worked our butts off for eight months now, flying back and forth every week to work extra with Chris to push the limits in rehab and always thinking wouldn't it be wonderful to be able to stay home and work with him around family and friends. Ponoka has provided what no other facility could provide and allow me to continue with therapies and exercise even after hours. All under one roof with an amazing staff. Even with the gains of the last six weeks just when the tide changed and rehab is becoming more intense, we are shot down and some government employee who has no experience in rehab or injuries of this magnetude or even what is available in BC, and they are going to make a life changing decision with no knowledge to what this course of action is going to remove from someone who has worked against all odds over the last two years just to get to these baby steps of success.
At this time I would like each and every one of you to write to your MLA, MP and any other agency you think could make a difference. We were blindsided once with the car accident, a second time when it came time for therapy at home (none exists) Begging every step of the way just for the right to fight for life and the freedom to work at rehab which we have done ourselves and with the staff at Ponoka. I have to say I am in shock and still reeling in the wake of this off the cuff decision.
To be told that such a place exists in BC even though more BC patients have arrived over the last couple of months, I hope to find that they have built a new facility and staffed it with neuro-trained Physio, Ot, Rec, Speech therapist and not the what was there when I left. I hope it is a training hospital that specializes in brain injury and some of the most forward think doctors working at it. Somehow I do not think I will find this.
A time has to come when all the craziness and bullshit stops and we start thinking about the injured and make informed decisions that are in their best interest no matter where that might be.
Shame on a government that can ship its residents abroad for therapy because they will not build and staff with properly trained professionals. They would rather produce smoke and mirrors and hope the individual will get tired of fighting and go away quietly.
We should all be scared and concerned for ourselves, asking can we trust a government when they control the: insurance company, medical coverage, rehab centers(or lack of), limits in court, funding for home care, access to money for rehab from insurance until they stretch the wait out over four or five years. Tell me the truth is it any wonder why people loose it.
What has happened to honesty and caring, everyone living in this Province and in Canada for that matter should remember this could happen to you or your family member. Speak up now before it's too late. I always thought that in a crisis, in a time of need or during a time of desperation there would be help, man was I wrong.
If they put as much energy into helping us with housing and home care Chris would be out of the system and home. They would never have to deal with this again, but government can't let go.
Sorry for rambling and carrying on but my god when will they just let us live and get on with our lives.
Kevin
I have been waiting on edge to get confirmation of our health ministry's approval for Chris' stay for another 3 months based on all the success we have had. All day I have been on the phone with the Lawyer and the ministry office. All the paper work had to be sent twice as the ministry could not find or did not get it. With panic running wild the letter from Chris' neurologist in Surrey was sent direct this afternoon only to be told she could not or does not make the decision on the extension. Just before leaving Chris' room this afternoon I got word from the lawyer's office who have been doing all the leg work at home while I am in Ponoka, that the ministry was only going to extend the stay for six weeks??????
The only explanation we have until a letter is sent, is that there must be a place in BC where he should be able to get the same treatment!!!!!!!!!!!!!!! What a screwed up system.
This is the same government that would not, could not place Chris anywhere to get rehab last year. Upon applying for support to go to Ponoka I was then told I would have to write them and explain why I wanted to go to Ponoka? Right hand doesn't know what the left hand is doing.
We have worked our butts off for eight months now, flying back and forth every week to work extra with Chris to push the limits in rehab and always thinking wouldn't it be wonderful to be able to stay home and work with him around family and friends. Ponoka has provided what no other facility could provide and allow me to continue with therapies and exercise even after hours. All under one roof with an amazing staff. Even with the gains of the last six weeks just when the tide changed and rehab is becoming more intense, we are shot down and some government employee who has no experience in rehab or injuries of this magnetude or even what is available in BC, and they are going to make a life changing decision with no knowledge to what this course of action is going to remove from someone who has worked against all odds over the last two years just to get to these baby steps of success.
At this time I would like each and every one of you to write to your MLA, MP and any other agency you think could make a difference. We were blindsided once with the car accident, a second time when it came time for therapy at home (none exists) Begging every step of the way just for the right to fight for life and the freedom to work at rehab which we have done ourselves and with the staff at Ponoka. I have to say I am in shock and still reeling in the wake of this off the cuff decision.
To be told that such a place exists in BC even though more BC patients have arrived over the last couple of months, I hope to find that they have built a new facility and staffed it with neuro-trained Physio, Ot, Rec, Speech therapist and not the what was there when I left. I hope it is a training hospital that specializes in brain injury and some of the most forward think doctors working at it. Somehow I do not think I will find this.
A time has to come when all the craziness and bullshit stops and we start thinking about the injured and make informed decisions that are in their best interest no matter where that might be.
Shame on a government that can ship its residents abroad for therapy because they will not build and staff with properly trained professionals. They would rather produce smoke and mirrors and hope the individual will get tired of fighting and go away quietly.
We should all be scared and concerned for ourselves, asking can we trust a government when they control the: insurance company, medical coverage, rehab centers(or lack of), limits in court, funding for home care, access to money for rehab from insurance until they stretch the wait out over four or five years. Tell me the truth is it any wonder why people loose it.
What has happened to honesty and caring, everyone living in this Province and in Canada for that matter should remember this could happen to you or your family member. Speak up now before it's too late. I always thought that in a crisis, in a time of need or during a time of desperation there would be help, man was I wrong.
If they put as much energy into helping us with housing and home care Chris would be out of the system and home. They would never have to deal with this again, but government can't let go.
Sorry for rambling and carrying on but my god when will they just let us live and get on with our lives.
Kevin
Thursday, November 26, 2009
Thursday Still Waiting
Hello,
I know two days in a row your thinking whats he doing??
Well a little more to tell, some of the equipment is being put together for Chris. It happens a little bit each day. Excellent pool session and tilt table that followed right behind today. Very productive and we had a video made of the session by the resident video guy here of todays therapy. When I get it I will post some of it.
All the work has created sore spots on Chris' ankle so to lesson the pressure Chris had some injections today to loosen the muscle in the ankle so the feet can be streched without being strained.
It all went great, very busy and tiring day today. We have finished all of our submissions and now wait on pins and needles for a confirmation from BC Health for the approval for the extension. If they keep it up they may have to look after me as well (just kidding).
Add more tomorrow,
Thank you,
Kevin
I know two days in a row your thinking whats he doing??
Well a little more to tell, some of the equipment is being put together for Chris. It happens a little bit each day. Excellent pool session and tilt table that followed right behind today. Very productive and we had a video made of the session by the resident video guy here of todays therapy. When I get it I will post some of it.
All the work has created sore spots on Chris' ankle so to lesson the pressure Chris had some injections today to loosen the muscle in the ankle so the feet can be streched without being strained.
It all went great, very busy and tiring day today. We have finished all of our submissions and now wait on pins and needles for a confirmation from BC Health for the approval for the extension. If they keep it up they may have to look after me as well (just kidding).
Add more tomorrow,
Thank you,
Kevin
Mid week Update
Hello and welcome,
We are nearing the end of November and are wrapped up in the process of extensions again. I apologize to those who check every day and found no update for a few days.
I have been trying to get all the paper work and pieces together for a month now so things would not be a confusion and endless rush to the deadline. But as usual the people that require all of this and those who can help don't unless pushed constantly.
Chris has been showing great signs after all the work and prodding by us and the new Physio therapist to take part in exercises that show his ability to hear and make decisions.
The things that most interest him are the questions and topics that are tied to his daily environment or memories of family and things that are dear and near to him including questions of medical nature and anatomy.
There have been the doubters and the odds against this happening were overwhelming so their disbelief is somewhat understandable. But in preparing the paper work that will be the foundation for his staying another term even those people have conceded that things do happen without reason or rhyme.
Chris is getting up to 85 % and higher on good days and is doing 50% consistently even on bad days and this is with the therapists and I changing positions so as not to influence his movements. On the good days his movements can be strong and direct others it takes some pushing to follow through.
Everyone has noticed true to Chris' nature that if something bores him or he loses interest, he will not take part until the exercise or activity changes.
I cannot begin to thank or praise the therapists that have taken to Chris and want to see a change as bad as I do. They really have been relentless and even when I get down or worn out they keep on going and pushing and coaxing for the answers. The support, caring and trust shown by the therapists, nurses, aides and the doctors has been unbelievable and is something you can never repay just be eternally grateful for all their help and understanding. I still can't believe that we can't build a facility even close to what they have here in Ponoka at home.
The sad part in all of this is there is a standard in testing for rehab that really applies to those who can move and take part in therapy as willing participants, and most medical facilities as well as heath authorities use this scale to test if someone should get more help, funding or consideration.
In the case of a severe injury slow and persistent should be the order of the day, but because all the little things that happen ever so slowly do not not count or matter, you do not measure up according to this scale and you don't qualify for additional help.
I see it as way to justify not spending the money even though we are talking about a quality of life not a sporting event.
I suppose that until these people have been brought down as low as you can go, and then experience the little things that happen miraculously on a daily basis as they build and struggle each and every day to gain back control or at least to meaningfully take part in a world they use to be a vibrant part of.
It is important to remind these people that all lives are precious and need every chance to work their way back into it no matter how little or how slow progress is.
It is these very people that will advocate saving a life at all cost because it is a measurable result.
But if that life cannot respond to take part in an testing situation they devise, then that life is deemed a failure and is expected to go quietly to an extended care home and stay until their final days, because they do not meet a standard that is not reasonable in all cases and does not have the ability to see past this.
Chris' Physio and I were going to try to video some of the things that are happening in todays session.
Then she called and informed me that the centers video person will come and tape as we work with him today. Once I have it and figure how to transfer it to this site I will post it.
Upon Leaving i will leave a link to the story that broke a couple of days ago that do show you should never give up when you know its there.
Thanks everyone I can only say "Thank You"
Kevin
The link is as follows: http://www.cnn.com/2009/HEALTH/11/24/coma.man.belgium/index.html
We are nearing the end of November and are wrapped up in the process of extensions again. I apologize to those who check every day and found no update for a few days.
I have been trying to get all the paper work and pieces together for a month now so things would not be a confusion and endless rush to the deadline. But as usual the people that require all of this and those who can help don't unless pushed constantly.
Chris has been showing great signs after all the work and prodding by us and the new Physio therapist to take part in exercises that show his ability to hear and make decisions.
The things that most interest him are the questions and topics that are tied to his daily environment or memories of family and things that are dear and near to him including questions of medical nature and anatomy.
There have been the doubters and the odds against this happening were overwhelming so their disbelief is somewhat understandable. But in preparing the paper work that will be the foundation for his staying another term even those people have conceded that things do happen without reason or rhyme.
Chris is getting up to 85 % and higher on good days and is doing 50% consistently even on bad days and this is with the therapists and I changing positions so as not to influence his movements. On the good days his movements can be strong and direct others it takes some pushing to follow through.
Everyone has noticed true to Chris' nature that if something bores him or he loses interest, he will not take part until the exercise or activity changes.
I cannot begin to thank or praise the therapists that have taken to Chris and want to see a change as bad as I do. They really have been relentless and even when I get down or worn out they keep on going and pushing and coaxing for the answers. The support, caring and trust shown by the therapists, nurses, aides and the doctors has been unbelievable and is something you can never repay just be eternally grateful for all their help and understanding. I still can't believe that we can't build a facility even close to what they have here in Ponoka at home.
The sad part in all of this is there is a standard in testing for rehab that really applies to those who can move and take part in therapy as willing participants, and most medical facilities as well as heath authorities use this scale to test if someone should get more help, funding or consideration.
In the case of a severe injury slow and persistent should be the order of the day, but because all the little things that happen ever so slowly do not not count or matter, you do not measure up according to this scale and you don't qualify for additional help.
I see it as way to justify not spending the money even though we are talking about a quality of life not a sporting event.
I suppose that until these people have been brought down as low as you can go, and then experience the little things that happen miraculously on a daily basis as they build and struggle each and every day to gain back control or at least to meaningfully take part in a world they use to be a vibrant part of.
It is important to remind these people that all lives are precious and need every chance to work their way back into it no matter how little or how slow progress is.
It is these very people that will advocate saving a life at all cost because it is a measurable result.
But if that life cannot respond to take part in an testing situation they devise, then that life is deemed a failure and is expected to go quietly to an extended care home and stay until their final days, because they do not meet a standard that is not reasonable in all cases and does not have the ability to see past this.
Chris' Physio and I were going to try to video some of the things that are happening in todays session.
Then she called and informed me that the centers video person will come and tape as we work with him today. Once I have it and figure how to transfer it to this site I will post it.
Upon Leaving i will leave a link to the story that broke a couple of days ago that do show you should never give up when you know its there.
Thanks everyone I can only say "Thank You"
Kevin
The link is as follows: http://www.cnn.com/2009/HEALTH/11/24/coma.man.belgium/index.html
Thursday, November 19, 2009
November 19, 2009
Hey everyone,
Things are still trucking along, therapy is in full throttle, some of the news-sessions/current events will be swapped for more Physio time.
Chris is tiring out earlier in the day with all the activity. We still get in the water each day and cycle legs and arms where ever time permit.
We are still in the process of gathering information for a possible extension.
Will keep you informed as things happen. OT is experimenting with buttons to see if Chris can communicate and turn off/on things with them. This is still in the begining stages but looks very promising.
Really tired tonight so signing out and getting some sleep before tomorrow mornings pool time.
Talk soon bte for now.
Kevin
Things are still trucking along, therapy is in full throttle, some of the news-sessions/current events will be swapped for more Physio time.
Chris is tiring out earlier in the day with all the activity. We still get in the water each day and cycle legs and arms where ever time permit.
We are still in the process of gathering information for a possible extension.
Will keep you informed as things happen. OT is experimenting with buttons to see if Chris can communicate and turn off/on things with them. This is still in the begining stages but looks very promising.
Really tired tonight so signing out and getting some sleep before tomorrow mornings pool time.
Talk soon bte for now.
Kevin
Monday, November 16, 2009
Mid-Novemberber Update
Hello again,
Very slow climb back from the two week set back we had with the feeding tube having to be replaced.
But having put that behind us and with great success in adapting to the changes we are ready to start fighting again.
Therapy has ramped up again and Chris is starting to respond to the challenge. Last week with the holiday mid-week kinda put a wrench into the flow. But Shelley, Kylan and Gwen traveled back with me and were there through the week to help cheer Chris on and push a little harder.
Hopefully we going to be looking at an extension at the Halvar Jonson Center. Some weeks ago with all the positive improvements in his workouts I started the ball rolling and have been gathering info and people with support to take another run at the process. The process takes it toll I wish it was once a year and not every three months, seems like we just get going and have to start all over again.
Remind me later when I have time to look into changing this!!!
For all of you who read this blog and have contacts who would support or assist, with experience or financially the setting up of a center here for people in the same situation that have no where to go and can not get the help they need. Please forward the info to me as I have started the beginings of looking into the possibility of setting up such a place.
Will update as therapy happens or any more news on Chris and his progress.
Thank you again for all your support.
Kevin
Very slow climb back from the two week set back we had with the feeding tube having to be replaced.
But having put that behind us and with great success in adapting to the changes we are ready to start fighting again.
Therapy has ramped up again and Chris is starting to respond to the challenge. Last week with the holiday mid-week kinda put a wrench into the flow. But Shelley, Kylan and Gwen traveled back with me and were there through the week to help cheer Chris on and push a little harder.
Hopefully we going to be looking at an extension at the Halvar Jonson Center. Some weeks ago with all the positive improvements in his workouts I started the ball rolling and have been gathering info and people with support to take another run at the process. The process takes it toll I wish it was once a year and not every three months, seems like we just get going and have to start all over again.
Remind me later when I have time to look into changing this!!!
For all of you who read this blog and have contacts who would support or assist, with experience or financially the setting up of a center here for people in the same situation that have no where to go and can not get the help they need. Please forward the info to me as I have started the beginings of looking into the possibility of setting up such a place.
Will update as therapy happens or any more news on Chris and his progress.
Thank you again for all your support.
Kevin
Thursday, November 5, 2009
Post Halloween update
Hello everyone,
Not a lot has been happening the last 10 days, with not being able to use the pool, Chris's tube replacement etc. So we used some of that time with extra physio- and with the cycle. Everything seems to be going great with the replacement tube that was put in a Red Deer, no complications and Christopher has been tolerating and doing great. We are back in the pool this week full-time and enjoying every minute of it.
I am just now starting the process for the possibility of an extension in Ponoka. Therapy is going great his reactions to things still very exciting.
We are continuing our endeavor to get the housing situation just right, with time always knocking at the door pressure from every direction seems to build and build. You would think with all that has transpired things would eventually start coming together. The paperwork with the government and for assistance in caregiving is still dragging on and on and on. What can you do nose to the grind stone, hope I can still breathe when this all comes together.
For those who didn't know, Chris just had his birthday on Sunday, November 1 and doesn't look a day older. Maybe even looking better with all the exercise!!
Like I said earlier it has been a fairly slow week nothing really exciting to report other than that we are still moving forward so we will keep you updated as things progress.
Talk to you soon and thank you,
Kevin
Not a lot has been happening the last 10 days, with not being able to use the pool, Chris's tube replacement etc. So we used some of that time with extra physio- and with the cycle. Everything seems to be going great with the replacement tube that was put in a Red Deer, no complications and Christopher has been tolerating and doing great. We are back in the pool this week full-time and enjoying every minute of it.
I am just now starting the process for the possibility of an extension in Ponoka. Therapy is going great his reactions to things still very exciting.
We are continuing our endeavor to get the housing situation just right, with time always knocking at the door pressure from every direction seems to build and build. You would think with all that has transpired things would eventually start coming together. The paperwork with the government and for assistance in caregiving is still dragging on and on and on. What can you do nose to the grind stone, hope I can still breathe when this all comes together.
For those who didn't know, Chris just had his birthday on Sunday, November 1 and doesn't look a day older. Maybe even looking better with all the exercise!!
Like I said earlier it has been a fairly slow week nothing really exciting to report other than that we are still moving forward so we will keep you updated as things progress.
Talk to you soon and thank you,
Kevin
Sunday, November 1, 2009
Happy birthday Christopher
Hello everyone,
Happy Birthday Christopher, its Chris's birthday today.
Thank you to all who have sent birthday well wishs for Chris I will be sure to relay them to him. Hopefully by next year we will be all set up at home and can host a party!
Last week was a slow uninspiring week as the pool was canceled all week due to the change in his feeding tube and his getting use to it. It has turned out alright as he has had no difficulty in dealing with the new system. It will be great to get back at it this week , I do notice the change in him when we do not get to the pool.
Physio has been great helping fill the open times and OT in fitting new items to the chair to try out. We escalated the time on the bike as well to make up short fall in excercise.
Never a dull moment, and when there is, we watch a hockey game!
Not allot to report this last week as it was kind of a transitional one so we wait for next week and all it will bring?
Talk soon Thank again,
Kevin
Happy Birthday Christopher, its Chris's birthday today.
Thank you to all who have sent birthday well wishs for Chris I will be sure to relay them to him. Hopefully by next year we will be all set up at home and can host a party!
Last week was a slow uninspiring week as the pool was canceled all week due to the change in his feeding tube and his getting use to it. It has turned out alright as he has had no difficulty in dealing with the new system. It will be great to get back at it this week , I do notice the change in him when we do not get to the pool.
Physio has been great helping fill the open times and OT in fitting new items to the chair to try out. We escalated the time on the bike as well to make up short fall in excercise.
Never a dull moment, and when there is, we watch a hockey game!
Not allot to report this last week as it was kind of a transitional one so we wait for next week and all it will bring?
Talk soon Thank again,
Kevin
Friday, October 23, 2009
Midday Friday 23, Oct
Hello all,
Sorry to say that today also will be a write off as far as getting up and taking part in any programs.
The Doctor felt that we should move more slowly with the transition of the feeding tube so our swim was cancelled this morning and now the rest of the Physio and such will not take place, bummer cause I can tell when Chris gets frustrated and wants to move. But to be safe on the side of caution and give the new tube a chance to get set in place and for Chris to deal with the change in feeding, we will just remain in bed with no activity today.
So, not allot to tell for the end of the week.
We will start fresh next week.
Bye for now,
Kevin
Sorry to say that today also will be a write off as far as getting up and taking part in any programs.
The Doctor felt that we should move more slowly with the transition of the feeding tube so our swim was cancelled this morning and now the rest of the Physio and such will not take place, bummer cause I can tell when Chris gets frustrated and wants to move. But to be safe on the side of caution and give the new tube a chance to get set in place and for Chris to deal with the change in feeding, we will just remain in bed with no activity today.
So, not allot to tell for the end of the week.
We will start fresh next week.
Bye for now,
Kevin
Friday Morning
Good morning everyone,
We had quite the trip to the Red Deer Hospital, even with the best laid plans things seem to always get messed up somehow. We had a good trip down to the hospital and arrived with high expectations only to find the plans that had been made were not in place at this end. We did get a new feeding tube put in, a different kind of feeding tube. It works a little different than the one he had in place but I won't get into details. We are trying it and hopefully Chris will tolerate the change and we will then be moving a step closer to our goal.
Ambulance service down was great no surprises, half hour trip to Red Deer in and ready to go.
But when we were ready to go we had to wait 2 1/2 hours for the transfer ambulance to arrive.
I gave the crew instructions on Chris for positioning, keeping him seated and upright, as well as his coughing spells and it was nothing to be alarmed about. Told them he just needed to sit up and cough it out, at this point one attendant asked if any nurses going to ride with them.
I explained that this would be the fourth trip with their service it only lasted a half hour and it was no big deal. As we turned to leave he proceeded to drop the bed leaving Chris in a flat position I quickly reminded him about keeping him seated.
Helped them out to the ambulance then went to get in the car to follow as I pulled around they had already left. By the time I got about halfway back to Ponoka I received a phone call which seemed to be very confusing. The ambulance had been turned back and ended up at the emergency department in Red Deer. So I turned around and headed back to Red Deer to the emergency department wondering what could be the problem. Just prior to arriving back at the hospital I received another phone call to tell me that the ambulance was on its way back to Ponoka with Christopher. I turned around and headed to Ponoka arriving back at four o'clock in the afternoon only to find no Christopher or ambulance when I got there.
Went down the hall looking for them and down the hallway came the stretcher from the ambulance with Chris tipping over the edge with arm and head hanging down.
I asked them if they headed to Edmonton in the three hours since they left Red Deer.
I was told that Christopher was gagging and choking and the same fellow that I talked to at the hospital decided that they needed to go to emergency that he couldn't handle it. I asked the same attendant why Christopher was hanging over the edge of the stretcher with his head hanging down to the side and red in the face. He proceeded to tell me that that's the way he wanted to sit that he in fact tried to straighten his head but he just wanted to put it back off the bed and let it hang over the edge. I so wanted to take that attendant and twist him around the end of the bed to see if that's how he liked to stand,
I can't even begin to tell the stupidity of this whole trip and at this ambulance crew.
All in all it was a 7 1/2 hour trip for a 15 minute procedure and a completely exhausting day. Once Chris was comfortable he seemed to fall asleep right away and was tolerating the new tube and feed well into the evening. I will see how overnight went this morning, and if all was well during the night we will be heading to the pool at 930.
I will update later and hopefully I will have all kinds of good things to tell from today.
Thanks for checking in,
We had quite the trip to the Red Deer Hospital, even with the best laid plans things seem to always get messed up somehow. We had a good trip down to the hospital and arrived with high expectations only to find the plans that had been made were not in place at this end. We did get a new feeding tube put in, a different kind of feeding tube. It works a little different than the one he had in place but I won't get into details. We are trying it and hopefully Chris will tolerate the change and we will then be moving a step closer to our goal.
Ambulance service down was great no surprises, half hour trip to Red Deer in and ready to go.
But when we were ready to go we had to wait 2 1/2 hours for the transfer ambulance to arrive.
I gave the crew instructions on Chris for positioning, keeping him seated and upright, as well as his coughing spells and it was nothing to be alarmed about. Told them he just needed to sit up and cough it out, at this point one attendant asked if any nurses going to ride with them.
I explained that this would be the fourth trip with their service it only lasted a half hour and it was no big deal. As we turned to leave he proceeded to drop the bed leaving Chris in a flat position I quickly reminded him about keeping him seated.
Helped them out to the ambulance then went to get in the car to follow as I pulled around they had already left. By the time I got about halfway back to Ponoka I received a phone call which seemed to be very confusing. The ambulance had been turned back and ended up at the emergency department in Red Deer. So I turned around and headed back to Red Deer to the emergency department wondering what could be the problem. Just prior to arriving back at the hospital I received another phone call to tell me that the ambulance was on its way back to Ponoka with Christopher. I turned around and headed to Ponoka arriving back at four o'clock in the afternoon only to find no Christopher or ambulance when I got there.
Went down the hall looking for them and down the hallway came the stretcher from the ambulance with Chris tipping over the edge with arm and head hanging down.
I asked them if they headed to Edmonton in the three hours since they left Red Deer.
I was told that Christopher was gagging and choking and the same fellow that I talked to at the hospital decided that they needed to go to emergency that he couldn't handle it. I asked the same attendant why Christopher was hanging over the edge of the stretcher with his head hanging down to the side and red in the face. He proceeded to tell me that that's the way he wanted to sit that he in fact tried to straighten his head but he just wanted to put it back off the bed and let it hang over the edge. I so wanted to take that attendant and twist him around the end of the bed to see if that's how he liked to stand,
I can't even begin to tell the stupidity of this whole trip and at this ambulance crew.
All in all it was a 7 1/2 hour trip for a 15 minute procedure and a completely exhausting day. Once Chris was comfortable he seemed to fall asleep right away and was tolerating the new tube and feed well into the evening. I will see how overnight went this morning, and if all was well during the night we will be heading to the pool at 930.
I will update later and hopefully I will have all kinds of good things to tell from today.
Thanks for checking in,
Kevin
Wednesday, October 21, 2009
Trying to keep up!!
Hey Everyone,
Short update, Chris has had a very good Monday and Tuesday being alert and bright during his Physio sessions. Tuesday his stomach tube was sticking shut not allowing food or meds to travel through, it has opened enough to get today's in and he is scheduled to go to Red Deer tomorrow (Thursday) to have it replaced with a larger one that will be easier to upkeep and more flexible in its use.
It will be an extremely early day and a long day for the trip to Red Deer and the wait in the out patient clinic to get it replaced. I will travel with him there and back and will update how the procedure goes when we get back.
Been working with the physio therapist and the OT as they have brought in one of the equipment suppliers to help in tweaking Chris's equipment to make his sessions more productive.
Chris was extremely tired today and slept most of it away. Little more congestion this week as we have had a couple less pool times this week and will miss tomorrow's as well because we will be in Red Deer.
Update more tomorrow,
Kevin
Short update, Chris has had a very good Monday and Tuesday being alert and bright during his Physio sessions. Tuesday his stomach tube was sticking shut not allowing food or meds to travel through, it has opened enough to get today's in and he is scheduled to go to Red Deer tomorrow (Thursday) to have it replaced with a larger one that will be easier to upkeep and more flexible in its use.
It will be an extremely early day and a long day for the trip to Red Deer and the wait in the out patient clinic to get it replaced. I will travel with him there and back and will update how the procedure goes when we get back.
Been working with the physio therapist and the OT as they have brought in one of the equipment suppliers to help in tweaking Chris's equipment to make his sessions more productive.
Chris was extremely tired today and slept most of it away. Little more congestion this week as we have had a couple less pool times this week and will miss tomorrow's as well because we will be in Red Deer.
Update more tomorrow,
Kevin
Thursday, October 15, 2009
Weekend Update
Chris has been doing great the last few days, today pretty tired but still gave his all.
The bike issue will be resolved with them bringing a new one in the way it should have been in the first place.
The speech therapist is back from holidays and very excited to hear of the changes in Chris she will again start working with him tomorrow in conjunction with other therapists.
OT has built a sling of sorts to give Chris the ability to move his arm unrestricted and improve his movement. Got a feeling there is lots more good news on the way stay tuned. This is so exciting to hear after a long, long, long walk down this road. Every minute has been worth it.
Thank All so much for making the fund raiser such a success.
Eternally grateful,
Kevin
PS will post some new pictures shortly.
The bike issue will be resolved with them bringing a new one in the way it should have been in the first place.
The speech therapist is back from holidays and very excited to hear of the changes in Chris she will again start working with him tomorrow in conjunction with other therapists.
OT has built a sling of sorts to give Chris the ability to move his arm unrestricted and improve his movement. Got a feeling there is lots more good news on the way stay tuned. This is so exciting to hear after a long, long, long walk down this road. Every minute has been worth it.
Thank All so much for making the fund raiser such a success.
Eternally grateful,
Kevin
PS will post some new pictures shortly.
Mid-October
Hello everyone,
The fundraiser went well approx 225-260 attended, thank you so much to all who could attend. For all who could not attend, we appreciate the support and well wishes.
I have to also thank all of Chris's friends and family who gave their time and allot of work to make it all possible and such a success.
Chris is doing well we are trying to keep the cold bug away as some others here are coming down with colds. His bike finally arrived on Wednesday with missing pieces and support pieces of wrong size. We are awaiting call back from the importer as to what will be done.
He can continue to use it while we sort out the details.
Chris and I sat in recliners to watch the hockey game last night must have been tired as he fell asleep at the end of the second period. Bet he would love to be playing!
Back in the pool first thing in the morning, good wake up call as well as relaxing start to the day.
Again a heart felt "Thank you" to all of you.
Kevin
The fundraiser went well approx 225-260 attended, thank you so much to all who could attend. For all who could not attend, we appreciate the support and well wishes.
I have to also thank all of Chris's friends and family who gave their time and allot of work to make it all possible and such a success.
Chris is doing well we are trying to keep the cold bug away as some others here are coming down with colds. His bike finally arrived on Wednesday with missing pieces and support pieces of wrong size. We are awaiting call back from the importer as to what will be done.
He can continue to use it while we sort out the details.
Chris and I sat in recliners to watch the hockey game last night must have been tired as he fell asleep at the end of the second period. Bet he would love to be playing!
Back in the pool first thing in the morning, good wake up call as well as relaxing start to the day.
Again a heart felt "Thank you" to all of you.
Kevin
Thursday, October 8, 2009
Pre fund raiser update
Hello everyone,
We are now entering the second part of the week and things are moving ahead extremely well all of the therapies taking hold and working out perfectly, Chris's new bike has arrived from Germany and will be delivered on Friday morning.
Heather Chris's physiotherapist has been working unrelentingly with Christopher and all of the benefits are starting to show not only is his recognition of the yes and no signs showing great progress but also recognition of the words placed in front of him.
I can't help but get him to kick the ball every time we are doing stretches it is so exciting to see, the physiotherapist is finding new ways to work out and to get Chris to react. It is exciting to see and the other therapists are getting excited as well and looking for new things.
They are now working on a system to relieve the weight of Chris's arm so that he can move and react quicker with his responses, it is an awesome time and has also been a long time. It also shows beyond doubt that work, work and more work does work.
I have told Chris about the fundraiser being held on Saturday and see the immediate reaction in his face I know he would love to be there but we are going to continue to make progress here every minute that we are allowed, you won't find us wasting a minute of this, especially knowing how precious every minute of rehab is.
The physiotherapist was so excited with Chris's ability to answer and be consistent that she asked one of the fellows from psychology to come down and watch and every question that was presented to Chris he was able to answer, remember these answers are not spontaneous it takes time for Chris to work out his responses and that's what's so special about what is going on right now is that the people working with him are willing to wait for those responses and see the differences happening.
Not too much is going on in the house finding it is proving to be very difficult but the search continues and it will happen.
This morning's swim was slow Chris was tired today as we had stayed up late watching the Canucks game last night.
Another full day tomorrow and Friday so bye for now.
Thank you all,
Kevin
Wednesday, September 30, 2009
End of September
Hello,
Updates are slow but positive. Chris is working hard with his new physio therapist, she doesn't let up nor give up.
Last week she got Chris to kick the ball while sitting on the edge of the table.
This week has been excellent for responding to questions, given time he has been able to direct his hand to select answers to things that are close to him.
Not so good at being able to rell the enviroment around him or where he is, but able to answer questions on family and things close to him.
Splinting and all therapies have moved up a notch making for a very tired guy at the end of the day. His new hand splint will be able to be adjusted to start putting a little stronger pull on his fingers to straighten them out. Leg splints have been adjusted to allow easier access and more comfort for longer wear and they keep his feet and legs straight while standing on the tilt up frame. Water therapy continues as usual great now for relaxing as three of them are at the end of the day.
Updates are slow but positive. Chris is working hard with his new physio therapist, she doesn't let up nor give up.
Last week she got Chris to kick the ball while sitting on the edge of the table.
This week has been excellent for responding to questions, given time he has been able to direct his hand to select answers to things that are close to him.
Not so good at being able to rell the enviroment around him or where he is, but able to answer questions on family and things close to him.
Splinting and all therapies have moved up a notch making for a very tired guy at the end of the day. His new hand splint will be able to be adjusted to start putting a little stronger pull on his fingers to straighten them out. Leg splints have been adjusted to allow easier access and more comfort for longer wear and they keep his feet and legs straight while standing on the tilt up frame. Water therapy continues as usual great now for relaxing as three of them are at the end of the day.
Wednesday, September 23, 2009
September update
Hello again,
Well let me start this week out with lots of praise for the physiotherapists working with Chris, they have him stretching early in the mornings, as well they ensure that his legs splints go on regularly through the day. He has now been getting multiple trips on the tilt table through the week lots of sit up and stretching exercises.
Wednesday morning when I arrived he was already up on the table already halfway through his session when therapists told him to let me know what happened this morning. After a minute or two they indulged me and told me that he had actually started to kick a ball with one leg while sitting on the table. Absolutely amazing how something so simple can bring a tear to your eyes, and make the hair on your neck stand up.
He was pretty tired this afternoon and ended his day with a massage. I also found out today from the distributor for the bicycle that was supposed to be here yesterday or today, he just found out there's been a two-week delay in delivery so we're trying to get one of the distributors in Edmonton to lend us one until Chris's arrives, the wait has been very frustrating, let you know once we get it.
On the home front we've looked at several more homes, it has come down to three or four possibilities, will be looking at them again this weekend and hopefully making a decision by Sunday.
I was asked to put in a reminder about the fundraiser which is October 10 at Sunbury Hall on Dunlop Road in Delta. If anyone has any questions or ideas they can contact Shelley or respond with a question through the blog site to me and I will forward it on to Shelley to look after or just e-mail back if I can answer.
Thank you,
Kevin
Tuesday, September 15, 2009
Mid-September update
Hello everyone, Chris is back underway with this programs at the Halvar Jonson center. It took a while but we now have all of his new programs setback in order and made sure that we had access to the pool and other therapies. His pool times have changed quite a bit through the week and require a little bit more flexibility of my arrival and departure times, his new therapies are more intense than before and shows signs of his reacting to them, he's much more tired and in need of sleep by the time late afternoon comes around.
We've got a good running start at most of the applications needed to be put in place, we do not yet have answers or acknowledgments that we were successful.
I await day by day for the answer to these questions.
His bike is being shipped from Germany and left 10 days ago and we still have another seven to go until delivery, this has us chomping at the bit to get back underway.
Sorry for the delay on the blog updates I've been very very busy and along with that very tired, seems impossible to stay awake at night to update even though I know a lot of you check daily, thank you for understanding.
We've got a good running start at most of the applications needed to be put in place, we do not yet have answers or acknowledgments that we were successful.
I await day by day for the answer to these questions.
His bike is being shipped from Germany and left 10 days ago and we still have another seven to go until delivery, this has us chomping at the bit to get back underway.
Sorry for the delay on the blog updates I've been very very busy and along with that very tired, seems impossible to stay awake at night to update even though I know a lot of you check daily, thank you for understanding.
Chris's workouts are pretty intense and keep him wrapped up most of the day, he doses and falls into deep sleeps in the afternoon and early evening this is a good thing.
Shelley and the kids were here last weekend to see him on Saturday and Sunday morning which I'm sure was very uplifting for him to hear Gwen, Kylan and Shelley.
Will update regularly this week, as I am now staying in Ponoka close to the center this enables me to get there earlier and stay later without running myself into the ground.
Will immediately add to the blog any good news or updates as it happens through the day and will faithfully try to updated each evening this week while here.
Thanks again for checking caring talk to you soon.
Kevin
Thursday, September 3, 2009
The extended stay
Hello everyone,
Well after a week away and total chaos dealing with extending Chris's stay in Ponoka, I spent many hours on the phone trying to get funding approval. So many hoops and hurtles to jump through at one time it would appear to be near impossible. Then I got a boost and some much needed help from some wonderful doctors and after many more hours of preparation funding was approved to extent Chris's stay.
Being back this week has been a trying one as we were not sure how long the Halvar Jonson Center would be willing to give us to continue. As of Wednesday we have come to an agreement with the Centennial center in Ponoka to extent Chris to up to three months to continue therapy at the great care that he receives here.
The cycle that was showing so much promise and an integral part of Chris' workout had to be returned on September 2nd. Something went wrong with the order process and it never arrived. We've had to order another one directly form Germany and wait for 15 days for it to arrive.
We will just have to keep extra busy with other activities until that happens. As his new term starts all of the therapies have had to realign and change time so it's a little confusing these first few days as everything gets put back in place to best suit Chris. While I was home last week I was able to take care of some other outstanding issues for equipment with ICBC. So the next couple of weeks will be spent trying to find the right property that will suit our needs for Chris, as most of the properties or houses we have seen the past did not quite meet the needs of alterations that will be acquired. So we will start in earnest to locate a suitable property immediately.
It would seem the roller coaster never stops, just figured as time went on the hills would get a little smaller but we seem to be riding a big one. Will update again after today's therapy and hopefully put on a picture or two and maybe a video.
Thank you all for checking in, talk to you soon.
Kevin
Monday, August 24, 2009
Fund Raiser Update
Hey everyone,
I will be away this week from Alberta but Shelley will be there with the kids I will update as she fills me in each day.
Jay has forwarded me the information on the up coming fundraiser it is as follows:
Love ya Bigs Party - Barbecue
Price $25 Burger/beer/salads & $10 Raffle Prize Draw
Start Time: Saturday, October 10, 2009 at 3:00pm
End Time: Sunday, October 11, 2009 at 12:00am
Location: Sunbury Hall, North Delta
Street: 10409 Dunlop Road
Phone: 604-787-7434 SHELLEY
A good times BBQ all day full of family, friends, food, stories and a good ol' fashion sports day. Raffle Prize Draw, 50/50, Dunk-tank, Bocci, Hockey Shots on BEAR and whatever else we can bet on....
To see more details and RSVP, follow the link below:http://www.facebook.com/n/?event.php&eid=120044011615&mid=fbc6c6G24c7766fG338faf6G7
You can also order raffle tickets directly from Shelley for $10.00 each
Last week we were able to get Chris to slow down and speed the cycle up when asked, the OT and some nursing have said this was the most productive month of all, looking at all the controversy and doubt about Chris' care upon returning home, I will ask to see if we would be allowed to keep working with what we have in place for a little while longer?
Thank you for your support,
Kevin
I will be away this week from Alberta but Shelley will be there with the kids I will update as she fills me in each day.
Jay has forwarded me the information on the up coming fundraiser it is as follows:
Love ya Bigs Party - Barbecue
Price $25 Burger/beer/salads & $10 Raffle Prize Draw
Start Time: Saturday, October 10, 2009 at 3:00pm
End Time: Sunday, October 11, 2009 at 12:00am
Location: Sunbury Hall, North Delta
Street: 10409 Dunlop Road
Phone: 604-787-7434 SHELLEY
A good times BBQ all day full of family, friends, food, stories and a good ol' fashion sports day. Raffle Prize Draw, 50/50, Dunk-tank, Bocci, Hockey Shots on BEAR and whatever else we can bet on....
To see more details and RSVP, follow the link below:http://www.facebook.com/n/?event.php&eid=120044011615&mid=fbc6c6G24c7766fG338faf6G7
You can also order raffle tickets directly from Shelley for $10.00 each
Last week we were able to get Chris to slow down and speed the cycle up when asked, the OT and some nursing have said this was the most productive month of all, looking at all the controversy and doubt about Chris' care upon returning home, I will ask to see if we would be allowed to keep working with what we have in place for a little while longer?
Thank you for your support,
Kevin
Thursday, August 20, 2009
Soon Ending
Good Morning,
Last week full of ups and downs ups were Chris pedaling the bike on his own regularly, arm work doing about 60 % on his own very good considering the spasms in the right arm.
Water treatment great relaxation that is always good even on a bad day.
The down side is it will all end August 31st as this is the day they have scheduled Chris' treatment to end here thinking it will be carried forward at home.
Truth is nothing that was supposed to be in place, is even close, as the lawyer seems to find every excuse in the book to drag out applications and dealings with the agencies that just cant see past the end of their noses.
I received a call from the social worker from Surrey to say they got word from Ponoka that Chris will be coming home. Next was the question, what will we be doing as they don't want him in the hospital, I explained that we have been trying for the last eight months to get approval for help at home as we have a plan to get him out, but all of this to no avail.
It would seem Health officials (and I use that term very loosely) seem to think that as long as ICBC is in the picture they will not accept any applications or allow access to any programs.as ICBC should pay.
The money left in the ICBC isn't enough to pay for half the equipment needed. So Fraser health has said he must go long term facility or we will be charged $900 a day for his care.
If we agree to go to long term we will lose any rehab money from ICBC and any rehab that would be provided by Fraser health which we already know is non existent.
I can not figure out whether the people who are running things are just that stupid, to think they are saving money but forcing situations they have created rather than giving help with getting people out of their care and home with family where real healing and therapies can take place by those who know what they are doing.
If anyone has contacts to media or news I would love at this point to tell the whole story not just the accident.
Thanks for the support it is what keeps me sane.
Kevin
Last week full of ups and downs ups were Chris pedaling the bike on his own regularly, arm work doing about 60 % on his own very good considering the spasms in the right arm.
Water treatment great relaxation that is always good even on a bad day.
The down side is it will all end August 31st as this is the day they have scheduled Chris' treatment to end here thinking it will be carried forward at home.
Truth is nothing that was supposed to be in place, is even close, as the lawyer seems to find every excuse in the book to drag out applications and dealings with the agencies that just cant see past the end of their noses.
I received a call from the social worker from Surrey to say they got word from Ponoka that Chris will be coming home. Next was the question, what will we be doing as they don't want him in the hospital, I explained that we have been trying for the last eight months to get approval for help at home as we have a plan to get him out, but all of this to no avail.
It would seem Health officials (and I use that term very loosely) seem to think that as long as ICBC is in the picture they will not accept any applications or allow access to any programs.as ICBC should pay.
The money left in the ICBC isn't enough to pay for half the equipment needed. So Fraser health has said he must go long term facility or we will be charged $900 a day for his care.
If we agree to go to long term we will lose any rehab money from ICBC and any rehab that would be provided by Fraser health which we already know is non existent.
I can not figure out whether the people who are running things are just that stupid, to think they are saving money but forcing situations they have created rather than giving help with getting people out of their care and home with family where real healing and therapies can take place by those who know what they are doing.
If anyone has contacts to media or news I would love at this point to tell the whole story not just the accident.
Thanks for the support it is what keeps me sane.
Kevin
Wednesday, August 12, 2009
Cycle news update
Hello,
On Tuesday morning the cycling was done with the OT and Chris wasn't taking part, he let the computer cycle for him, not sure what was happening, he did a 20 minute leg and 15 minute arm work out after dinner on Tuesday for me.
Wednesday was an up and down day, started with Chris being sick in the morning and blood tests taken, so no swimming. All the tests and checks were negative no one knows why he got sick???
As the day progressed he seemed to feel better actually got on the cycle machine for a 20 minute workout. While I was checking to see if the pool was available for an afternoon swim so we could get one in after the time speech therapy and other stuff was finished, but his massage appointment was to close and we couldn't fit it in.
We left him pretty relaxed, so hopefully he would get a good night sleep, we will be in the water this morning and a cycle workout before lunch time.
Trying to upload a video of Chris on the cycle hopefully it works if not I will post some pictures this afternoon.
Kevin
On Tuesday morning the cycling was done with the OT and Chris wasn't taking part, he let the computer cycle for him, not sure what was happening, he did a 20 minute leg and 15 minute arm work out after dinner on Tuesday for me.
Wednesday was an up and down day, started with Chris being sick in the morning and blood tests taken, so no swimming. All the tests and checks were negative no one knows why he got sick???
As the day progressed he seemed to feel better actually got on the cycle machine for a 20 minute workout. While I was checking to see if the pool was available for an afternoon swim so we could get one in after the time speech therapy and other stuff was finished, but his massage appointment was to close and we couldn't fit it in.
We left him pretty relaxed, so hopefully he would get a good night sleep, we will be in the water this morning and a cycle workout before lunch time.
Trying to upload a video of Chris on the cycle hopefully it works if not I will post some pictures this afternoon.
Kevin
Sunday, August 9, 2009
Mid August update
Hello everyone,
Chris was up and on the cycle again for 20 minutes on Friday and was able to keep going. Pretty exhausted so arms only about 10 minutes. Sunday U Larry, U Robert and A Helen will be spending the afternoon with him, going for a walk and talking.
I am driving back home today and will be flying back to Ponoka on Tuesday to continue pool and cycle therapy as well as his usual therapies, will have more updates on progress at that time.
Still struggling with government programs or lack of as well as the ability to come to grips with appropriate house and area! These all take time away from the therapy he really needs it is very frustrating having to make that choice between therapy everyday or taking days to push and argue over things that should just be there when needed.
All the time and research put in to locating equipment and uncovering things that work is that I get to apply them in a way that Chris can benefit as well I can share with so many people in need.
I hope the facility in Ponoka will invest in some of these cycles for the many people they work with everyday.
Talk again on Tuesday,
Thank you,
Kevin
Chris was up and on the cycle again for 20 minutes on Friday and was able to keep going. Pretty exhausted so arms only about 10 minutes. Sunday U Larry, U Robert and A Helen will be spending the afternoon with him, going for a walk and talking.
I am driving back home today and will be flying back to Ponoka on Tuesday to continue pool and cycle therapy as well as his usual therapies, will have more updates on progress at that time.
Still struggling with government programs or lack of as well as the ability to come to grips with appropriate house and area! These all take time away from the therapy he really needs it is very frustrating having to make that choice between therapy everyday or taking days to push and argue over things that should just be there when needed.
All the time and research put in to locating equipment and uncovering things that work is that I get to apply them in a way that Chris can benefit as well I can share with so many people in need.
I hope the facility in Ponoka will invest in some of these cycles for the many people they work with everyday.
Talk again on Tuesday,
Thank you,
Kevin
Thursday, August 6, 2009
Some Great News 08.06.2009
Hey everyone,
Same things ongoing, progress still moving forward, Chris is still getting in the water everyday with the stretching and motion movements in the water keeping him quite limber and mobile.
Since removing the drugs over the last two weeks alot of movement and little things that he used to do have started to come back, making the water sessions even more rewarding.
Today Uncle Larry, Emma and I had Chris in the pool stretching him then letting him relax, other than getting rid of alot of phlegm he had quite a good day.
As I said a few days ago we were waiting for the machine I found to to arrive, it is amotorized sensing leg and arm machine fully computerized. It arrived yesterday afternoon.
We got it going today with a few of the resident OT's and Physiotherapist's present to see how it worked and what it could do. Christopher was very relaxed almost to the point that I thought we may have to wait till later. But after fitting him into the leg supports and everyone happy with the way things were going I turn it on releasing the peddles, to our amazment they started to turn even though the motor had not been turned on.
The computer started tracking the movement and showed he was doing the peddaling himself with no assistance after checking all the controls, the OT and I looked at each other, he went to get the head nurse and the doctor I ran for the camera, actually I sent Emma out to get it as I was still holding him and encouaging him on.
Everyone looked on in disbelief the doctor had to try the controls and brakes to make sure we weren't pulling a fast one. I had to stop him after 22 minutes of pedaling so we could try the arms. Chris then did another fifteen minutes of arm cycling even though the machine kicked in a couple of times to assist when he got a muscle spasm.
Very exciting and encouraging day, left there on pins and needles.
Update tomorrow after our pool and another bout on the machine.
Bye for now
Kevin
Same things ongoing, progress still moving forward, Chris is still getting in the water everyday with the stretching and motion movements in the water keeping him quite limber and mobile.
Since removing the drugs over the last two weeks alot of movement and little things that he used to do have started to come back, making the water sessions even more rewarding.
Today Uncle Larry, Emma and I had Chris in the pool stretching him then letting him relax, other than getting rid of alot of phlegm he had quite a good day.
As I said a few days ago we were waiting for the machine I found to to arrive, it is amotorized sensing leg and arm machine fully computerized. It arrived yesterday afternoon.
We got it going today with a few of the resident OT's and Physiotherapist's present to see how it worked and what it could do. Christopher was very relaxed almost to the point that I thought we may have to wait till later. But after fitting him into the leg supports and everyone happy with the way things were going I turn it on releasing the peddles, to our amazment they started to turn even though the motor had not been turned on.
The computer started tracking the movement and showed he was doing the peddaling himself with no assistance after checking all the controls, the OT and I looked at each other, he went to get the head nurse and the doctor I ran for the camera, actually I sent Emma out to get it as I was still holding him and encouaging him on.
Everyone looked on in disbelief the doctor had to try the controls and brakes to make sure we weren't pulling a fast one. I had to stop him after 22 minutes of pedaling so we could try the arms. Chris then did another fifteen minutes of arm cycling even though the machine kicked in a couple of times to assist when he got a muscle spasm.
Very exciting and encouraging day, left there on pins and needles.
Update tomorrow after our pool and another bout on the machine.
Bye for now
Kevin
Monday, August 3, 2009
Overdue update
Hello everyone,
It has been a fairly busy time in Ponoka, even though holidays and lack of therapy has been the order of the day over the summer. All the drugs that have been tested and tried have had a varying degree of success some not so well and others a glimmer of hope.
We are now in the process of trying the last of the drugs as our time winds down. There's not been an astonishing change but all the same Chris's physical and mental presents is very strongly felt and acknowledged every day.
It is our hope and plan that in the weeks and months to come the rehabilitation program that we have designed for Chris will prove to be very successful. During this time we will be looking for friends and family and others to help with the physical needs and therapies that will be a daily routine.
Our house hunting for suitable house and rehab Center has been very difficult, we have not found the perfect place nor have we been able to secure the proper help and financial support that really is necessary to move ahead successfully.
We are awaiting approval for home care support and hopefully within the next few weeks will be in a position to make an offer and secure the proper housing and facilities that will be required. Having said that, the places we have looked at will require some extensive renovations and alterations to accommodate the exercise equipment and all of Chris's needs. I would very much appreciate any and all support and help with this time comes.
The logistics of putting all this together has been quite trying, as the travel back and forth to Ponoka every week to spend those days with Chris during therapy have taken their toll and have not allowed for a lot of free time to look and plan for the immediate. Paperwork, research, medical articles and new technology, it takes an endless supply of time and consent ration to search for new research and medical therapies.
This week of August 4 we will be trying one more new drug and retrying one of the previous drugs, after that we are scheduled for a departure from the Centennial center the week of August 24, the immediate placement to where he will be is still in the air, as a lot of the government programs and funding are still being fumbled around and pushed from department to department. We do plan on finishing up the applications and having it presented by the end of this week.
On the positive side these past few weeks have been moving ahead with new things being noticed some of this has stemmed from the visiting of Christopher's niece and nephew they seem to be able to stir and cause sensations out of nowhere. We hope that having Chris back close to home near family and friends familiar voices and a structured rehabilitation program will build and build driving him forward to more successful steps. My time in the pool with Christopher has been unbelievable and Kylan has been coming into the pool with me and helping stretch and massage Christopher's feet and toes, Shelley and Uncle Larry also took turns in the pool helping out, I believe that Chris senses this very much, the aqua therapy without a doubt has been the most forward moving therapy to be done.
I have located a new piece of equipment that will allow Chris to exercise on a regular basis to increase his cardiovascular and circulation something that has been missing for all of these months. I anticipate some negativity in getting funding for this, so I have arranged for a machine to be delivered to the Centennial center so that Christopher may become familiar it and test it out with the doctors, physiotherapists and OT are present. Providing a hands-on proof that this machine will be of great benefit to him. Also providing the center the chance to try out a new piece of equipment.
How the machine responds and Chris responds to it will be posted once machine has been delivered and tried.
Christopher's uncle Larry has spent the past few weeks with me in Ponoka and weekends with Chris providing a much-needed change in conversation and stimulation thank you very much Larry. I know by way of phone calls and e-mails that many of you would like to be here if you could to encourage Chris. I look forward to seeing all of you and discussing Chris's therapies and how you may help out once we get back home.
Thank you all so much for checking caring and keeping in touch, I know I have breaks in updating the blog, sometimes, time just seems to go on and on then days turn into weeks. I will try to stay on top of this over the next few weeks. I may have to enlist a typist or someone that can that can type with more than two fingers.
Thank you for your patience,
Kevin
Thursday, July 16, 2009
Overdue update for Christopher
Hello again everyone,
Just to let you know things are still moving forward at the Halvar Johnson Center. Things have been very slow through summer as therapist go on holiday no replacements are brought in for most therapies they just get canceled making for a very long day.
The pool shutdown on July 1 for repairs and maintenance leaving us without any aqua therapy and a lot of other therapies also out of commission. We did the best we could over the two weeks, we had changes to the drugs and the amounts used. Didn't seem to help much at all. We are now embarking on taking Chris off his current meds. Then trying a couple new ones. Our discussions regarding treatment have led us to a an expected departure date sometime during the week of August 24, Chris will be brought back to BC and hopefully the therapists that we needed to locate will be in place by that time, as well, the extended care help that we've been asking for and trying to get in order.
This week has been the return to the pool, which has been great for Christopher. Kylan, Gwen and Shelley all came back to visit Chris this week. While here Kylan has been coming in the pool every day with me to help stretch Christopher and limber him up, Gwen and Shelley get a birds eye view from the deck. The days are long, warm and with therapists away on holidays sometimes seem unfulfilled, but just knowing that the things we can do and care that's being given is great, we can keep building from there.
Most of the equipment and the things that we will be needed at home we have located or the processing of getting, the doctors here will approve or recommend them for use in Chris's rehab. Hopefully ending a trail of paper crap, red tape and the needless hiring of extra people for no real purpose, so they can look at the equipment for ICBC and tell them yes or no, they are needed or not, most of them don't understand the use of allot of the new equipment. Watching Christopher's medical money being spent pointlessly is very irritating.
We are also in the process now of setting up Chris's home care plan and applying to the government for assistance with his care, will be updating the site again tomorrow once we finish an early-morning pool session and have a little more to add thanks for checking.
Kevin
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