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maryar
@maryar

Posts: 12
Joined: Jan 13, 2018

Help: I want more information about stroke rehab

Posted by @maryar, Sun, Jan 14 2:42pm

I had a bleeding stroke four months ago. I can find lots of information about stroke, but very little about what to expect if/when feeling returns. How will I know? And when can I expect the feeling in my right side, which I have extremely little of, to come back? Does it come back slowly? or do I just wake up one morning, and suddenly it has all returned? I am exercising on a rowing machine five or six days a week for thirty minutes a day, as well as various stretches. I have spasticity in my foot that I also can’t get rid of.

REPLY

Hello @maryar and welcome to Mayo Connect. I see that this is your first post and we appreciate your sharing your story and experiences with us. At Mayo Connect we all learn from each other and each person adds something to our understanding of health issues.

I applaud you on the proactive approach you are taking towards recovering from your stroke. It sounds as if you are putting a lot of effort into a regular exercise program.

Did you go through Physical Therapy after your stroke in order to find the best exercise program for you? Some of your questions about when to expect feeling to come back would be good questions to address with a physical therapist. Perhaps other Members who have experienced a stroke might be able to offer you some of their experiences with recovery feeling. I’m sure it must be different for each individual.

Here is a link to a Mayo Clinic website that deals with some recovery issues, https://www.mayoclinic.org/diseases-conditions/stroke/in-depth/stroke-rehabilitation/art-20045172. As you can see, there are many therapies that can be used. If you would be comfortable sharing more, please let us know which ones you have had.

Here are some other Mayo Connect discussions about strokes and brain bleeds that you might find helpful,
https://connect.mayoclinic.org/discussion/brain-bleed/ and
https://connect.mayoclinic.org/discussion/cerebellar-stroke-experiencetreatmentrecovery/

I would like to invite some other Members of this group to join us in your discussion, @strokesurvivordynamo @ebkramer @ej0114 @tazi0 @lakelifelady and @fekind. I hope that they will add to this discussion and to your questions.

We look forward to hearing from you again. By the way, have you had any speech problems following your stroke?

Teresa

Hi @maryar. I would like to add my welcome to Teresa’s. Glad to see that you have found Mayo Clinic Connect!

Can you remember any signs or symptoms pre stroke that had you concerned?
Teresa offered you some excellent information. I too look forward to hearing back from you.

Hi, I will try to add more details. It is hard for me to type. Basically, I don’t remember a lot of what happened, but I do know my stroke was a matter of maybe five minutes from the first sign. I say this because I know I had brought my son to work then came home. I remember cutting an apple and suddenly feeling “funny” (my daughter says after the fact, that I said I felt some pain in my arm and felt weird). So I went in the living room, bringing a phone with me in case i had to make an emergency call. I opened my laptop to “symptoms of a heart attack”, started feeling worse, turned on the phone, fell on the floor, and that is where i laid until my husband got home three hours later, then calling an ambulance. I only know these details because my son says when he got home from work the phone was dead on the floor with my laptop next to it, and what it was opened to.

I spent six weeks in the hospital. I have had occupational, physical, pelvic and speech therapy since I have been out of the hospital. Since January 1, 2018, my therapy is very limited as I now have to pay $30.00 per therapist, totaling $120.00 a day, before January I had met my deductible, now I have to start over.
While all this therapy is good, I still seem to be finding my own way through the internet searching for more info. I don’t feel like my PT gave me much in the way of exercises, hence the reason I purchased a rowing machine and still do some of the exercises I received from the hospital.

As far as when and how feeling comes back, the only answer i receive is everyone is different. While I understand that to be true, I would like to think there is something to give me hope!! Will the feeling start in my thigh and work its way down to my toes? Or will it start with my foot and move up? Spasticity is very painful, but is it a sign of feeling returning? So many things I desire to know with no answers.

Hi Mary,
Thank you for sharing more of your situation, especially when it is a challenge to type.
I’m bringing fellow members @lsatenst1 @soloact @lakelifelady and @beachgal8 into this discussion about rehab after stroke to share their experiences with rehabilitation, regaining mobility and exercise. @hump1278 has also talking about spasticity and may be able to offer their experience.

It has been two and a half years since the accident where I endured a TBI. Daily I struggle with cognitive and emotional ramifications of that brain bleed. I have been an accomplished musician and still play and sing but I am slower than before and my eyes, mind, voice and fingers often will not work together fast enough to keep up to tempo. It is at these times that frustration and sometimes depression set in. Talking back to negative thoughts is a constant effort, but a must to retain resilience. I swim a bit, walk and scare my family and friends when I take off on my pink bike without a helmet. Do not go far or fast however. I feel lurchy and off balance some when I go for a walk and have accepted that this is the new normal. Vestibular eye movement therapy is good for dizziness andMotion sickness which also is a given.
Keep at whatever motion is available to you and work your mind on reading, conversing, games or music. Even if you do not feel much progress, it is still working for you to keep strong and flexible and capable.

@lakelifelady

It has been two and a half years since the accident where I endured a TBI. Daily I struggle with cognitive and emotional ramifications of that brain bleed. I have been an accomplished musician and still play and sing but I am slower than before and my eyes, mind, voice and fingers often will not work together fast enough to keep up to tempo. It is at these times that frustration and sometimes depression set in. Talking back to negative thoughts is a constant effort, but a must to retain resilience. I swim a bit, walk and scare my family and friends when I take off on my pink bike without a helmet. Do not go far or fast however. I feel lurchy and off balance some when I go for a walk and have accepted that this is the new normal. Vestibular eye movement therapy is good for dizziness andMotion sickness which also is a given.
Keep at whatever motion is available to you and work your mind on reading, conversing, games or music. Even if you do not feel much progress, it is still working for you to keep strong and flexible and capable.

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There are no awards for stubborness, so you might want to give in on that helmet. 😉 “Talking back to negative thoughts” is something we all know about and have to work at all the time, I’ll bet. Sounds like you’re doing GREAT at adapting and accepting, even though it might not feel like you are some days. It’s a tough thing to accept, especially given your music.

@lakelifelady

It has been two and a half years since the accident where I endured a TBI. Daily I struggle with cognitive and emotional ramifications of that brain bleed. I have been an accomplished musician and still play and sing but I am slower than before and my eyes, mind, voice and fingers often will not work together fast enough to keep up to tempo. It is at these times that frustration and sometimes depression set in. Talking back to negative thoughts is a constant effort, but a must to retain resilience. I swim a bit, walk and scare my family and friends when I take off on my pink bike without a helmet. Do not go far or fast however. I feel lurchy and off balance some when I go for a walk and have accepted that this is the new normal. Vestibular eye movement therapy is good for dizziness andMotion sickness which also is a given.
Keep at whatever motion is available to you and work your mind on reading, conversing, games or music. Even if you do not feel much progress, it is still working for you to keep strong and flexible and capable.

Jump to this post

Did you have any paralysis? And when and how did it go away? I have so many questions, and so few answers.

Hi Mary,

Glad you came here as a resource. I had my cerebellar stroke in Dec 2015 (clot not a bleed). I had physio at home weekly for 2 months when I wasn't allowed to drive. After those 2 months, I continued with the same therapy exercises for months on my own with a family member supervising as I continued to improve. I don't have physical symptoms like yours (my issue had been balance and is better) but in other groups I belong to, therapy seems to be the answer to regaining (hopefully, no guarantees) feeling/control.

It is true that every person is different with both their symptoms and their recovery. I found that very frustrating to hear and it sounds like you've been told the same thing. There doesn't seem to be a straight answer because it all depends on where the damage is in the brain and how severe it is.

I would suggest reaching out to your local Heart and Stroke office for more information on what to expect. I'm assuming you are in the US (I'm in a Canada) so I'm not sure what other resources you have available to you.

What kept me positive was an attitude of gratitude. For the first whole year after my stroke I tweeted about something I was grateful for each day. It kept the focus on positive things. I have read many stories about people feeling discouraged and struggling with depression after a stroke. Keep your focus positive to help avoid that. Sounds so simple but really is proven to work.

Good luck with your recovery.

My first question is why a rowing machine? I have no remembrance of either of my strokes, I was in the hospital – for other things – when I had both of my strokes. I was told a doctor was with me when I had my first stroke in November of 2014, the second one was a month later. I had feeling in my right side I just could not move it, my left side was not much better. When I was sent to rehab I could hardly stand let alone walk. With lots of determination, and no rowing machines, today I can walk on non-carpeted floors without my walker, (eighteen month old babies walk better than I do) live by myself, I do not drive, I continue to knit, answer questions to the best of my ability, and I am happy – most of the time. I have physical therapy, to work on the areas of my body that still need help.

As far as feeling, what are you talking about? The mobility you once had on your right side? Knowing if you touched something HOT or ice cold? If you do not know what is hot or cold, run, don't walk, to the nearest hospital. Getting the mobility back could depend on what was damaged in the brain and how willing you are to do the correct PT and OT. I started knitting again my second week in rehab, because I knew that was one way to get my hand/fingers working again. Typing was not easy. I started using one finger, I still have to look at the keyboard to make sure I am going to hit the key I want, not the one next to it. Can you use a pencil/pen? Adult coloring books with good colored pencils can work wonders. Did you enjoy puzzles before? All puzzles can stimulate the brain and open up some of the areas that were damaged from the stroke. Different types of puzzles work different parts of the brain. Start at the beginning, don't just jump in and do adult puzzles, you have to work up to them.

I do not think I answered your question about waking up one morning having the feeling you once had. It is a long process, each morning you might notice a small change, do not disregard it because it's not what you want, you should thank your body for the small changes. Without the small changes we cannot have the big ones. mlmcg

@strokesurvivordynamo

Hi Mary,

Glad you came here as a resource. I had my cerebellar stroke in Dec 2015 (clot not a bleed). I had physio at home weekly for 2 months when I wasn't allowed to drive. After those 2 months, I continued with the same therapy exercises for months on my own with a family member supervising as I continued to improve. I don't have physical symptoms like yours (my issue had been balance and is better) but in other groups I belong to, therapy seems to be the answer to regaining (hopefully, no guarantees) feeling/control.

It is true that every person is different with both their symptoms and their recovery. I found that very frustrating to hear and it sounds like you've been told the same thing. There doesn't seem to be a straight answer because it all depends on where the damage is in the brain and how severe it is.

I would suggest reaching out to your local Heart and Stroke office for more information on what to expect. I'm assuming you are in the US (I'm in a Canada) so I'm not sure what other resources you have available to you.

What kept me positive was an attitude of gratitude. For the first whole year after my stroke I tweeted about something I was grateful for each day. It kept the focus on positive things. I have read many stories about people feeling discouraged and struggling with depression after a stroke. Keep your focus positive to help avoid that. Sounds so simple but really is proven to work.

Good luck with your recovery.

Jump to this post

Thank you, I live in a small town, yes, in the US, but it is hard to find much info. I will be at the 6 month point in a little over a week. I dread seeing that time period come and go as I am so scared I will never get feeling back!

@mlmcg

My first question is why a rowing machine? I have no remembrance of either of my strokes, I was in the hospital – for other things – when I had both of my strokes. I was told a doctor was with me when I had my first stroke in November of 2014, the second one was a month later. I had feeling in my right side I just could not move it, my left side was not much better. When I was sent to rehab I could hardly stand let alone walk. With lots of determination, and no rowing machines, today I can walk on non-carpeted floors without my walker, (eighteen month old babies walk better than I do) live by myself, I do not drive, I continue to knit, answer questions to the best of my ability, and I am happy – most of the time. I have physical therapy, to work on the areas of my body that still need help.

As far as feeling, what are you talking about? The mobility you once had on your right side? Knowing if you touched something HOT or ice cold? If you do not know what is hot or cold, run, don't walk, to the nearest hospital. Getting the mobility back could depend on what was damaged in the brain and how willing you are to do the correct PT and OT. I started knitting again my second week in rehab, because I knew that was one way to get my hand/fingers working again. Typing was not easy. I started using one finger, I still have to look at the keyboard to make sure I am going to hit the key I want, not the one next to it. Can you use a pencil/pen? Adult coloring books with good colored pencils can work wonders. Did you enjoy puzzles before? All puzzles can stimulate the brain and open up some of the areas that were damaged from the stroke. Different types of puzzles work different parts of the brain. Start at the beginning, don't just jump in and do adult puzzles, you have to work up to them.

I do not think I answered your question about waking up one morning having the feeling you once had. It is a long process, each morning you might notice a small change, do not disregard it because it's not what you want, you should thank your body for the small changes. Without the small changes we cannot have the big ones. mlmcg

Jump to this post

Lol, I bought the rowing machine because it was good for working my arm and leg at the same time! I wanted anything that would help my body! I found a cheaper one on Amazon and have been pleased with it. My therapy is pretty much over as they don't feel they can help me anymore. OT helped me for a while, but as for sensation of hot/cold, well, they just say it will take time or might never come back.

As time is going on I am getting somewhat better about waiting, I have so wanted to be "normal," but perhaps that will never happen. I am 52 feeling like I am 65. I don't want to wear diapers (pelvic therapy is the only pt I am still in) and walk while dragging one leg around. But, as you said, I need to be thankful for each little thing. I am out of a wheelchair! I can walk!

I am doing puzzles, started with 50 pieces, and now am up to 300. I also do word searches, and try "finding words," for instance I pick a letter, usually going in order of the alphabet, set a timer for five minutes, and write each word I can find in my brain until the timer beeps. I started at about 4 words per minute. Now I do about 8, so not a ton of improvement, but some!

It is so wonderful when OT and PT tell us that we are doing so well that they can no longer help us. If I do not have the doctor I have and the PT who renamed the help I needed I would not be getting any more help. I asked to be re-evaluated to make sure I was not going backwards but progressing.

As far as the diapers, besides cost, you may want to see someone in Urology ASAP. I am taking pills to help control my bladder and do not have to be on diapers. There again, it could depend on the area of the brain that was damaged.

Being out of the chair is a BIG plus. Have you tried a walker? There are devices that could help with the foot dragging.

Up from a 50 piece puzzle to a 300 one is GREAT. Next you will have to try a 500. Just remember to use your right hand to put the puzzle together, I had to remind myself to use my right hand not my left. I was never good at word puzzles, I like Sudoku. Using a timer is a very good way to improve your brain muscle. Going from 4 to 8 is a very good improvement, you just doubled your score. Now you get to try for 16.

Do NOT think you are not improving, just remember where you were while you were in the hospital. Twenty to thirty years ago very few people lived more than days or weeks after a stroke, today it is years. However, the doctors have not caught up with the fact people are living with strokes and they don't know what to do with us. Our insurance companies don't want to spend money on rehab for us, especially if we are over 50, to have us never work again.

I hope this helps you. Good luck. mlmcg

I forgot to add, if the only puzzles you have are the 50 and 300 piece ones try putting the 50 piece puzzle again one row at a time. I use to do them one row at a time when I wanted to put a puzzle together and all I had were puzzles I had put together so many times I almost knew where every piece went. I never tried doing them upside down. You have the top of the puzzle next to you and the bottom away from you, if you were to look at the puzzle from the other side of the table it would be the way it should be. You could always do it row by row upside down. Be careful your family/friends might start to worry about you, or buy you more puzzles. Good luck. mlmcg

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