[Rehab] Please help me! My brother should be in a high intensive program, but due to bed unavailability, he is getting low intensive therapy

General
1

Hi, my brother, Kevin (age 21), had a brain surgery (removal of avm, craniotomy) a month ago, on June 18, 2013. He had a stroke, which resulted in the left side paralysis. Four days ago, he was finally transferred to rehab from St. Micheal's hospital, but instead of going to Toronto University rehab, where he can get intensive therapy daily (High intensive long period of time, which only has 6 beds), he is in E.W. Bickle centre (Low tolerance long duration). I honestly think he must get intensive therapy as soon as possible, but because there's no bed available, he is stuck in this low intensive program, and it will take more than 2 or 3 months for him to be transferred to Toronto University rehab.

Kevin is right now practicing sitting on a bed, and he has no balance. When we were transferred to Bickle centre, a case manager said, "No rehab thinks he should get intensive therapy." Is that true? I think that's a complete lie, because Bickle centre is not even specialized in brain injury. I think it's just an excuse they came up with to send us to Bickle centre because there is no beds (and we don't even know what number we are on the waiting list; in fact, I don't think we are even on the waiting list.) I met one lady in Bickle centre who is on the same boat as us; she said that's what the case manager told her too. [If you ever had this experience, please leave a comment.]

Right now, he is getting 30 min physiotherapy three times a week, and 45 min occupational therapy two times a week. We are thinking about getting a private physiotherapist(1 hour, two times a week) to make it as intensive as possible (Our doctor approved us getting a private therapy, so we are allowed to hire a private physiotherapist.)

Do you think getting the private therapy is good? If it is good, could you recommend good physiotherapists?
And do you think he is not ready for "intensive therapy?" We are trying as best we can do to provide him a high intensive program offered in Toronto University Rehab. Please leave comments for Kevin and my family. If you were in a high intensive program, please tell me how many times you receive the therapy for a week. Thank you.

P.S. We have a family meeting about 2 weeks later. On that day, I'm thinking about asking for a high intensive short term program since it has more beds (20 beds) than a high intensive long term, which has only 6 beds. So when the short term ends, he can either go to a private physiotheray centre or something. My family is willing to pay for the private therapy (money doesn't matter to us anymore) but I'm not sure us getting a "intensive" program is going to work unless there's a bed... My brother needs a long period of time for rehab...

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Thank you for your reply! But you were transferred straight to the acute rehab from the hospital, right? You did not go through "low tolerance long duration" rehab before going to intensive rehab, is that right?
And when you were at the acute rehab where you were receiving therapy almost everyday, were you able to stand on your feet at that time? Because what the case manager told me was that you need to "at least stand on your feet to receive intensive care(daily)". This, I don't understand. It seems like you were at the acute care when you had to be in a wheelchair, right?

And I don't know how long my brother can tolerate, but when he came to rehab, he was able to do 20 min of physiotherapy and then he said "I'm tired," and it ended. How many physiotherapy did you have when you were at the acute care? (was it an hour every day?)

I know I'm asking many questions at once, but please let me know and thank you so much!

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Hi, again - I'm going to try my best to remember the questions, but if I forget (I'm not into reading really carefully bc of the vision) do tell me! I might not me using my terms correctly for the kinds of hospitals. So let me try again in my vernacular:

1) OHSU - a big teaching hospital; craniotomy and initial stabilization
2) VIBRA - an LTAC (Long Term Acute Care) facility; I was in bed all the time here, except during PT. I sat, stood, and walked for the first time here. Here's a video of one of my first walks. I required full body support - I was still very loopy and did whatever my PT said to do because I was just following instructions automatically. One of my first PT sessions was to sit on my bed (with people on either side of me) for a few minutes (3 or 13, I forget). Gradually I sat in my reclining wheelchair for 45 minutes. Once they understood the goal was to get me into RIO they would try to do more therapy on me so I could build my tolerance up.
3)RIO - Therapy boot camp. Sessions were 30 minutes long but I often had 2 back to back, and I seem to recall morning and afternoon sessions. I think if we did am/pm they were half an hour each - either way I wasn't sure if I'd make it through the session. But as my PT told me, "The goal is for you to tell me BEFORE you pass out." and I think they all knew I wanted to go home really badly to the DC area (from Portland, OR) so they were intent on getting me ready for discharge ASAP. I was still in a wheelchair here and was unable to stand without support until several months after I came home. I had to use a standing frame nightly (picture of "The Vice") to build my tolerance for being on my feet. Pretty much everyone was in a chair - they had a fleet of them and we all wheeled around to therapy or our rooms, or someone pushed us.

I was transferred via ambulance between these hospitals and did no low tolerance long duration rehab - I didn't even know those facilities exist. I think my mental frame of mind was to say "yes" to everything - so I tried lots of things in PT and since I could do many of them (although I had trouble breathing, or holding my own head up), they saw that I could tolerate quite a lot. The requirements are likely different for each hospital, although I think my parents were extremely focused (like you are) on getting me into RIO. The other alternative was a nursing home, and Mom was like, yeah, no - you will not be sending my child to a nursing home. So they went off to visit RIO, and Dad's a lawyer and likes lots of documentation so I think he probably made them give him a checklist of requirements bc everyone seemed to know what they were - e.g. my nurses would come and take one of my bedrailings down bc it was required for entrance into RIO...(presumably so they were assured you could lie in bed without falling out). I am confused about the standing on your feet thing - they should qualify that - do they mean assisted or without support? Because I learned to stand up at Therapy Boot Camp (RIO, 3rd Hospital). I think getting a checklist in writing might be helpful so everyone knows what the goals are. Even if your brother doesn't get one of the 6 beds and goes the short term acute rehab route, this might be helpful.

:)www.annninglearninghow.com

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THank you so much for your reply! You are my life saviour!
But how long were you in the 1st & 2nd hospital before you were transferred to RIO? And were you getting intensive PT session in the 2nd hospital? (How many mins of PT were you getting a day? And was it mon to Fri?)
And yes, in rehab where my brother is staying currently, they said he has to show improvement to be transferred to a intensive program. But this I don't understand - how can he improve when he is only getting 30 min of PT on Mon, Wed, and Fri? We think it's not even considered exercise. And they also said at least stand on feet with support, I believe.
Do you think we should get a private PT? (So this way, he can get at least 30 min of PT daily?) Or should he just go to a private clinic?
Currently, my brother can tolerate sitting in a wheelchair for more than 4 hours and is practicing sitting on a bed.
I am so sorry for asking too many questions at once! Thank you so much, and your video was amazing! ;)

P.S. oh! and how long did you stay in RIO?

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I went into pretty intensive therapy every day a week except less on the weekends. I couldn’t even lift my head when I went in the first day, so that kinda sounds like bogus that they think he shouldn’t be on it. I know RIC in Chicago had a relatively new floor when I went down there, I think they might be filled up now, but they were amazing. I think it’s very important to get intensive therapy early on since that is when you are most apt to recover. I had mine when I was 20.