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Post stroke rehab

Posted by janoh @janoh, Mar 31, 2020

It was a year in January 2020 that my 40 year old daughter had a stroke. She is in a nursing home, has a trache and feeding tube. We’ve been trying to get her physical therapy but every time they evaluate her they say she isn’t following commands “consistently” The nursing home is suppose to be giving her restorative therapy, which they haven’t been doing like they should.
My concern is how will she be able to get into physical therapy if no one is working with her. She has two babies at home and a fiancé and family that she needs to come home to.
I’m Janice, her mom.
Thanks!

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barrybailey | @barrybailey | Jul 12 8:48am
In reply to @grrranny "Had a stroke 8 weeks ago. Was in acute rehab hospital 4 weeks with physical therapists..." + (show)
Profile picture for grrranny @grrranny

Had a stroke 8 weeks ago. Was in acute rehab hospital 4 weeks with physical therapists 2 hours 5 days a week, then home the last 4 weeks with physical and occupational therapists for an hour 4 times a week. Have made a little progress, but still not out of wheelchair and walking. Will start Outpatient physical therapy next week, but it's only an hour once a week.Those of you with Outpatient physical therapy experience -- what has been your experience? I don't know what to expect.

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It sounds like you are receiving a good therapy program. I hope you are not depending on only the sessions you share with your therapists to speed your recovery. The changes your brain makes (neuroplasticity) after a stroke take time to manifest, as it figures out new pathways to revive old stroke destroyed functions. The more you exercise your brain, the faster recovery will happen. Check with your therapist(s) if you have any restrictions. If not, practive on your own any exercises you do with your therapist, if that is safe and possible for you to do alone. Do it often throughout the day, resting in between sessions to let your brain and muscles respond to the messages you are giving them through your exercises. Good luck. You have to keep moving to keep moving!

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ph0t0jam1n | @ph0t0jam1n | Jul 12 8:07pm
In reply to @grrranny "Had a stroke 8 weeks ago. Was in acute rehab hospital 4 weeks with physical therapists..." + (show)
Profile picture for grrranny @grrranny

Had a stroke 8 weeks ago. Was in acute rehab hospital 4 weeks with physical therapists 2 hours 5 days a week, then home the last 4 weeks with physical and occupational therapists for an hour 4 times a week. Have made a little progress, but still not out of wheelchair and walking. Will start Outpatient physical therapy next week, but it's only an hour once a week.Those of you with Outpatient physical therapy experience -- what has been your experience? I don't know what to expect.

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My husband is a 20-yr stroke survivor (hemorrhagic stroke) that affected his right side. He continues to work out even at this time as the earlier posting stated that you need to keep moving, stimulated w/various activities, but it helps that I continue to "hover" over my husband. I drag him all over the place and encourage him on outings, we're able to take more trips now that I'm retired as I want to keep him stimulated. He is doing fairly well but was doing much better the first 10 yrs as we also had a dog who kept him moving since he walked the dog 2x daily. My husband had over 9 months of therapy, similar to what you are currently going through w/in-patient rehab, PT/OT at home, then outpatient therapy all under my work's insurance. But we were fortunate that we also connected to another PT specialist who was referred to us from other therapists. We paid out of pocket for a few years and even now, my husband goes to a special needs gym in the SF Bay Area that caters not only to those w/spinal cord injuries but also those w/neuro injuries such as MS, stroke, PTSD, etc. Remember though that PT/OT isn't just when you're in the clinic, the exercises/routines you practice in clinic are also "homework" that will help w/a more effective recovery. You may never recover completely from a stroke but it takes time, patience, perseverence, and seeking support from groups here and local in your community. Even as a caregiver, I sought support and it helped me realize there are so many others who were not as lucky as we were, it could've been worse. Wishing you the best, stay positive, don't compare yourself w/others, you do you and work hard at your therapy.

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mb0926 | @mb0926 | Jul 13 9:25am
In reply to @grrranny "Had a stroke 8 weeks ago. Was in acute rehab hospital 4 weeks with physical therapists..." + (show)
Profile picture for grrranny @grrranny

Had a stroke 8 weeks ago. Was in acute rehab hospital 4 weeks with physical therapists 2 hours 5 days a week, then home the last 4 weeks with physical and occupational therapists for an hour 4 times a week. Have made a little progress, but still not out of wheelchair and walking. Will start Outpatient physical therapy next week, but it's only an hour once a week.Those of you with Outpatient physical therapy experience -- what has been your experience? I don't know what to expect.

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After my stroke I did home health with PT, then outpatient and it really helped, they identified focused care that was needed that no one else noticed.

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GDCM | @gdcm | Jul 13 10:35am
In reply to @grrranny "Had a stroke 8 weeks ago. Was in acute rehab hospital 4 weeks with physical therapists..." + (show)
Profile picture for grrranny @grrranny

Had a stroke 8 weeks ago. Was in acute rehab hospital 4 weeks with physical therapists 2 hours 5 days a week, then home the last 4 weeks with physical and occupational therapists for an hour 4 times a week. Have made a little progress, but still not out of wheelchair and walking. Will start Outpatient physical therapy next week, but it's only an hour once a week.Those of you with Outpatient physical therapy experience -- what has been your experience? I don't know what to expect.

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I had a stroke (right hippocampus) on June 1. I was in the hospital for 1 week, then transferred to a Rehab hospital for 1 week with daily PT. When released to home, I had PT 3 times a week for 2 weeks at home. I now go to Neuro rehab facility 5 times a week (40 mins each day.). Because I had no muscle weakness from my stroke, the PT is all about relearning to walk and balance myself (the hippocampus tracks the body in space) so I was extremely dizzy/woozy and was not able to walk without losing my balance. (I had vision issues, short-term memory loss, and word retrieval issues as well. However these are much improved 90% after a 4 weeks.) I learned to use a walker, and wearing a gait-belt where my husband would hold me to stabilize. After lots of walking and specific exercises to retrain my brain, I am able to walk on my own now… but slow and not gracefully. My walking has improved to about 75%. I continue rehab 5 days a week, and each day I make progress; it seems the more I exercise the more the “gyroscope” in my brain will “reset”. I firmly believe I would not have made the progress I have, without frequent rehab and home exercises. I don’t know if I will return to my 100%, but I am note getting to the point that I can function more normally and be independent and doing things we used to do. Best of luck, and work hard!

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grrranny | @grrranny | Jul 13 10:48am
In reply to @gdcm "I had a stroke (right hippocampus) on June 1. I was in the hospital for 1..." + (show)
Profile picture for GDCM @gdcm

I had a stroke (right hippocampus) on June 1. I was in the hospital for 1 week, then transferred to a Rehab hospital for 1 week with daily PT. When released to home, I had PT 3 times a week for 2 weeks at home. I now go to Neuro rehab facility 5 times a week (40 mins each day.). Because I had no muscle weakness from my stroke, the PT is all about relearning to walk and balance myself (the hippocampus tracks the body in space) so I was extremely dizzy/woozy and was not able to walk without losing my balance. (I had vision issues, short-term memory loss, and word retrieval issues as well. However these are much improved 90% after a 4 weeks.) I learned to use a walker, and wearing a gait-belt where my husband would hold me to stabilize. After lots of walking and specific exercises to retrain my brain, I am able to walk on my own now… but slow and not gracefully. My walking has improved to about 75%. I continue rehab 5 days a week, and each day I make progress; it seems the more I exercise the more the “gyroscope” in my brain will “reset”. I firmly believe I would not have made the progress I have, without frequent rehab and home exercises. I don’t know if I will return to my 100%, but I am note getting to the point that I can function more normally and be independent and doing things we used to do. Best of luck, and work hard!

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@gdcm, I can’t thank you and the others enough for sharing your experiences!
I won’t be able to have any help from my 84 year-old husband, as he has to be in recliner all day due to pulmonary fibrosis and severe kyphosis. My son may be able to help a little occasionally.

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GDCM | @gdcm | Jul 13 12:10pm
In reply to @grrranny "Had a stroke 8 weeks ago. Was in acute rehab hospital 4 weeks with physical therapists..." + (show)
Profile picture for grrranny @grrranny

Had a stroke 8 weeks ago. Was in acute rehab hospital 4 weeks with physical therapists 2 hours 5 days a week, then home the last 4 weeks with physical and occupational therapists for an hour 4 times a week. Have made a little progress, but still not out of wheelchair and walking. Will start Outpatient physical therapy next week, but it's only an hour once a week.Those of you with Outpatient physical therapy experience -- what has been your experience? I don't know what to expect.

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Do whatever you can & go to PT as often as possible! I was doubtful about how much it would help at the beginning. But each time after PT , I left feeling better with my brain much more clear…and I gradually was able to do more. (I am 69, and my husband has been able to help luckily). Perhaps consider going to outpatient PT more often, and doing your home exercises as often as you can. (Everytime I had to get up to go to the bathroom, I would use it as a cue to do my exercises….which ended up being double what I was asked to do. ) Best wishes to you! (hug)

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grrranny | @grrranny | Jul 16 10:49pm
In reply to @grrranny "Had a stroke 8 weeks ago. Was in acute rehab hospital 4 weeks with physical therapists..." + (show)
Profile picture for grrranny @grrranny

Had a stroke 8 weeks ago. Was in acute rehab hospital 4 weeks with physical therapists 2 hours 5 days a week, then home the last 4 weeks with physical and occupational therapists for an hour 4 times a week. Have made a little progress, but still not out of wheelchair and walking. Will start Outpatient physical therapy next week, but it's only an hour once a week.Those of you with Outpatient physical therapy experience -- what has been your experience? I don't know what to expect.

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UPDATE: Had outpatient evaluation yesterday. I will be going to physical therapy twice a week and occupational therapy (including my hand and arm) twice a week, for an hour each -- for 10 months. They also want me to practice doing a little walking using the walker at home with my caregivers. No more just sitting around in the wheelchair!

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Moderator
Lisa Lucier, Moderator | @lisalucier | Sep 16 1:22pm
In reply to @janoh "Thank you! We live in Ohio, suburb of Cleveland. We have tried to get my daughter..." + (show)
Profile picture for janoh @janoh

Thank you!
We live in Ohio, suburb of Cleveland. We have tried to get my daughter in with three different Inpatient Physical Medicine and Rehab Facilities. 1) UPMC denied her because they wouldn’t accept out of state Medicaid. 2). OSU Wexner Medical Center they felt that she wouldn’t be able to handle the intense 3 hour a day, 5 days a week physical therapy. 3) Metro - Cleveland same reason as OSU.
My daughter has a trache and a feeding tube. She is non verbal. She can follow you with head and eyes when you move around and talk to her. She answers your questions either by squeezing your hand or nodding her head. She can wiggle her toes on her right side and a little bit on her left (her stroke affected her left side). She definitely knows we are there.
Our concern is: How will she be able to follow commands “consistently” if no one is working with her consistently. The nursing home say they are working with her but how do we know this (we can’t be there 24-7) When we question them they always have an excuse (short staffed, they will do it tomorrow, etc).
We have established with a PM&R Doctor and we have a follow up with her, but because of the pandemic, it is rescheduled for later May.
It’s frustrating because it has already been over a year and she hasn’t really had any physical therapy. My husband and I visit every day and we try to do the best we can with working her legs and arms.
We are not giving up and I know my daughter doesn’t want to give up either!

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Hi, @janoh - just wanted to check in and see how things are going with your daughter?

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