Carolee Winstein, PHD - Be Your Best Advocate—Four Ways The New Guidelines Change Stroke Rehab May 29,  2016  7:05am EST

When I was in rehab,in 2012,I had to ask,more than once,to please have my therapy focus more on walking.I put puzzles together ,too quick,they said.it was obvious my left arm wasn't doing too well,but I could walk with a walker not wonderfully,but everyone clapped and I cried,but it was not their major focus and I was a noted.of course,I was a 58 yo stroke patient,so why should I be taken seriously.they said there is a lot to learn before you can just stand up and walk...but,I could stand up and keep! No one took me at my word,so,here I am four years later.I had 15 mins of training with a hemi walker in Sept of 2013,I wAtch YouTube videos of stroke patients and now I can walk 11,12steps.problem is,no therapy,so I'm afraid to wLj beyond where I know I can back up and d it down.thank you for your story.,cindy

i cant get my social worker to get me medicaid keeps coming up with reasons sounds like blame game first it was me not hgetting her correct financial records now its the state im losing precious time could be spent rehabing almost 8 months post stroke i need to function again bringing me down mentally to point im almost giving up dont have that initial drive anymore

Thank you for your article. I am a caregiver to my 93 year old Father who had 2 strokes in March. MRIs showed previous strokes as well. Can't imagine how he survived. Since I was with him in March, I experienced the entire process. I stayed with him for 2 months prior to moving him to my home. I completely agree that in-patient rehab is the way to go. If you have the insurance to cover it, take full advantage. Rehabs should provide 3 hour daily PT, OT and ST. Dad was able to qualify initially for 3 weeks. Then they transferred him to a skilled nursing facility and that was depressing. He practically lost all of his new skills and initiative. I couldn't wait to get him out of there. A bad UTI landed him in the hospital here and they suggested more in-patient rehab which I thought was a great idea. Here's the clincher - Stroke victims don't always go through change, transfers or trauma/illness very well. So, going to a hospital or rehab is shocking to their system and thinking process. It takes Dad 3-4 days to get "settled in". Well, Medicare, and therefore the hospitals/rehabs, don't cover that adjustment time so rehab starts on arrival or next day with mixed or little results. Even though Dad did start improving, he was evaluated on day 4 and I was told it was best to bring him home. I begged for more time and got 4 more days. They saw the improvement but still suggested he would be better off at home. I was a nervous wreck. We are very fortunate that our local Nurses on Call are providing quality in-home therapies and Dad is flourishing. I'm amazed at his daily improvement. We are going through the caregiver vetting process. That's exhausting. But I'm getting better at it myself and not nearly as nervous. Dr. Winstein is correct in her suggestions and list of interventions. Speech therapy also includes eating/swallowing exercises. We also took advantage of classes and literature. We are Blessed. At 93, Dad is doing better than many younger stroke victims. And he has really good insurance! Our hearts go out to so many younger patients, persons without insurance, etc. The job of the Social Worker is to be an advocate for care. We were luckily there as well. But it has been a stressful 3 months and everyone has told me my Dad was lucky I was there to be his advocate. I fired more than one doctor and raised many concerns on Dad's behalf. Don't take no for an answer. You have rights. It's OK to demand additional help and other opinions. Our medical system is not perfect, but there are ways to get assistance. Good luck all and God Bless You!

13 years ago in January at 75 my husband had a stroke and a wise nurse at the hospital said he should go to the rehab hospital. He had intensive rehab. When he got there he couldn't stand. When he came home I drove him to a local rehab place until he could drive himself. In the spring a grand son came and helped him farm. The next year he farmed by himself. He still doesn't have full use of left arm and leg and we have moved to a retirement village.

you didn't mention anything about faith & prayers. don't they matter?????

Hi Carolee, I hope I got the correct understanding that you wrote to me. Hi this is Leslie. Sweet heart, I have worked my fanny off. In November 2009, I worked with Shelly (she is a gift to me) for 2 1/2 years. Shelly asked me if I could wright my story, and it took 5 day's. After that, they kicket me into UW, hearing, speaking,& clinic, I have done 4 years there. I don't have the money, so, they do not make me pay for this at all. This took me 2 years to find out that the ladies who were working with me are leaning about stroke people like me and I also have aphasia. I am not going to school this summer,,(first time in years), there is no class about this. but I already have class in fall. In my understanding, I will go to school for the rest of my life, and Ya that is OK and Cool. Thanks for righting me, Leslie

I have only had a TIA in 2003 but my husband had a stroke in 1990 before there were stroke support groups. He had a hemmorhagic stroke and was completely paralyzed on the left side. He was in thee hospital for knee replacement surgery and got a blood clot. He was lucky I found a good rehab hospital for him and he spent 6 weeks there and had some out patient therapy after that. He was almost as well as before the stroke. Several years later he got Alzheimers and Lewy Body Dementia which was much worse than the stroke. He passed away 7 years ago. Beverly

I survived 2 brain-stem strokes 3 years ago and have made significant recovery. I pushed my regimen well beyond what the therapists showed me and what the doctors told me. It might not be wise for everyone to push so hard, so check with your doctor before doing so. I can tell you that it is sometimes possible to exceed everyone's expectations... but progress is not guaranteed regarding the extent, speed, or completeness of progress. Even neuroplasticity picks it's own schedule... you can have high expectations and do all the right work... and it might not arrive...YET. Have hope, and don't stop trying, even if formal therapy cannot continue. My religion has become more important to me. But so has my community of friends and acquaintances. Hope is essential... sometimes I can see myself doing certain things, but I have a strong sense of reality. E.g., I won't be trying-out for the 400 meter relay team, but I can walk a bit whereas I could not previously. Keep trying, either to maintain the status quo, or (hopefully) to improve in some ways. Be strong, or strive to be strong.

Thank you for the information..

I am happy to read this post. I would like to find a team to help me with my stroke therapy. Where do I go to find this?