What to do?? Life after a stroke

Posted by cinque @cinque, Jul 27, 2020

I am a 49yr old Black man revering from a stroke. I don’t know what to do or where to look to do something with my life. By the way i had my stroke in Sept 2019. I have to use a walker and I can’t really talk. Any help would be greatly appreciated.

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@nicky7

My husband 64 yrs. had 2 strokes. One on 9/8/2020 the other 9/18/2020. He has made great progress. He's physically fine and speech is good. His biggest problem is apathy. He has zero motivation. Doesn't really care about much.
Has anyone experienced this?

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Hi @nicki7

Sorry to hear of your husband's stroke, keep affirming to him that there is life after stroke. Sounds like he is at that 6 months after stroke period, from what I have read this is called the chronic period, and the recovery can really slow down or plateau. This is when you really have to go to work to facilitate the neuroplasticity. There are literally thousands of us out there that are fighting this fight. I am 65 and I had a moderate to severe cerebellar stroke in September of 2019, I was very active prior to this, teaching Spin classes, fly fishing, rafting, bow hunting, biking. etc. My stroke certainly took the wind out of my sails, it significantly affected my balance and coordination. I also have experienced the apathy your husband is going through. Unfortunately, in my case anyway, there is no easy cure, it just takes lots of work. Many days I don't feel like doing anything, but if I just get out there and stop feeling sorry for myself, everything slowly, emphasis on slowly, starts to get better and then you begin to see a glimmer of hope. See if you can find something, anything, that he might be interested in, and help him get set up to do that. Key to anything working for him will be baby steps at first, start and increase slowly. I know a lot of this seems pretty obvious, but sometimes you just have to hear it anyway. I have read several books on stroke recovery, "Stroke Rebel" and "Stronger after Stroke" are two good ones. Another one that really helped me come out of the after stroke funk was, "The Obstacle is the Way" by Ryan Holiday, this is not about stroke recovery, but mainly about dealing with all the obstacles that life puts in our paths. It's about Stoicism, and references some of the great stoics like Marcus Aurelius, Seneca, etc. It is a quick read and was very helpful for me. If he is not up for reading, might be good for you to read, or even see about getting something on Audible so he can just listen. It will be work for both of you, just get him going on something and he will thank you in a year or two.

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@nicky7

My husband 64 yrs. had 2 strokes. One on 9/8/2020 the other 9/18/2020. He has made great progress. He's physically fine and speech is good. His biggest problem is apathy. He has zero motivation. Doesn't really care about much.
Has anyone experienced this?

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I really feel for you. My husband had several strokes before they found out the cause and fixed it through surgery. Until his last stroke, he would bounce back very quickly but this last one affected his brain so badly that he now has issues with short-term memory, apathy, his empathy has disappeared, he has absolutely no motivation to do anything but lay in bed and watch television and is extremely fatigued. I took him to speech therapists until they stated that due to his lack of motivation they had gone as far as they could. I then took him to a cognitive specialist who dealt specifically with stroke patients but because my insurance didn't cover her it got quite expensive and there was no change anyway so we stopped after 6 months which is when COVID reared it's nasty head anyway. Keep in mind that your husband's strokes were very close together and fatigue also can cause apathetic behaviour. It sometimes takes a while for the fatigue to get better. I had to force my husband to take small walks with me every day and explained that laying around just causes more fatigue. He tried it for about 3 months and then told me he was done with it. However, I have seen many people who didn't have as many strokes as my hubby and didn't have as severe damage and they were back to full abilities and their fatigue got better over time so keep working at it and see what occurs. There might be times he might seem to improve and then go backwards and then go forward again so don't get discouraged.

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@amandajro

@nicky7 thank you for sharing some more details. This may seem over simplified, but have you asked him about his lack of motivation and what may be going on or to get some more insight?

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Thank you for the response. We've talked about his motivation he says he doesn't know. He just doesn't have any desire to do anything. I'm hoping in time this gets better.

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@steveinak

Hi @nicki7

Sorry to hear of your husband's stroke, keep affirming to him that there is life after stroke. Sounds like he is at that 6 months after stroke period, from what I have read this is called the chronic period, and the recovery can really slow down or plateau. This is when you really have to go to work to facilitate the neuroplasticity. There are literally thousands of us out there that are fighting this fight. I am 65 and I had a moderate to severe cerebellar stroke in September of 2019, I was very active prior to this, teaching Spin classes, fly fishing, rafting, bow hunting, biking. etc. My stroke certainly took the wind out of my sails, it significantly affected my balance and coordination. I also have experienced the apathy your husband is going through. Unfortunately, in my case anyway, there is no easy cure, it just takes lots of work. Many days I don't feel like doing anything, but if I just get out there and stop feeling sorry for myself, everything slowly, emphasis on slowly, starts to get better and then you begin to see a glimmer of hope. See if you can find something, anything, that he might be interested in, and help him get set up to do that. Key to anything working for him will be baby steps at first, start and increase slowly. I know a lot of this seems pretty obvious, but sometimes you just have to hear it anyway. I have read several books on stroke recovery, "Stroke Rebel" and "Stronger after Stroke" are two good ones. Another one that really helped me come out of the after stroke funk was, "The Obstacle is the Way" by Ryan Holiday, this is not about stroke recovery, but mainly about dealing with all the obstacles that life puts in our paths. It's about Stoicism, and references some of the great stoics like Marcus Aurelius, Seneca, etc. It is a quick read and was very helpful for me. If he is not up for reading, might be good for you to read, or even see about getting something on Audible so he can just listen. It will be work for both of you, just get him going on something and he will thank you in a year or two.

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Has anyone tried any type of vitamins or supplements that helped with recovery?

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My wife of 45 years had a ischemic stroke April 21,2022.She was diagnosed with breast cancer April 10,2022.Scheduled to start chemo therapy April 22,2022.I think the stress of cancer was a big factor in her stroke.She was in the hospital for 11 days.Then sent to a SNF.Spent 5 days there and I put her in a rehab hospital.The rehab did wonders for her.But,after 3 different times in the hospital,the breast cancer has spread to her liver.So,after all of this,her home health care company says she is not progressing as quickly as she should,so the insurance will not be paying for treatment anymore!What I am wondering is where can I find a book that gives me direction on how to help her with her PT.Thank you anyone that can help.

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@sclatt

My wife of 45 years had a ischemic stroke April 21,2022.She was diagnosed with breast cancer April 10,2022.Scheduled to start chemo therapy April 22,2022.I think the stress of cancer was a big factor in her stroke.She was in the hospital for 11 days.Then sent to a SNF.Spent 5 days there and I put her in a rehab hospital.The rehab did wonders for her.But,after 3 different times in the hospital,the breast cancer has spread to her liver.So,after all of this,her home health care company says she is not progressing as quickly as she should,so the insurance will not be paying for treatment anymore!What I am wondering is where can I find a book that gives me direction on how to help her with her PT.Thank you anyone that can help.

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Hello @sclatt and welcome to Connect. I am so sorry to hear of your wife's health difficulties. How difficult for you both!

If I understand correctly, you are looking for some exercises that will help her recover from her stroke. Is that correct?

First of all, I suggest that you think about the disabilities that she is experiencing and list them. For example, is she having speech problems, gait/walking or balance difficulties, and/or problems using her hands? Once you've determined her greatest needs, I suggest you go to YouTube and search for exercise videos for each problem area. You will probably find exercises that she was given during her PT.

When she had PT, was she given sheets with sample exercises?

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@sclatt

My wife of 45 years had a ischemic stroke April 21,2022.She was diagnosed with breast cancer April 10,2022.Scheduled to start chemo therapy April 22,2022.I think the stress of cancer was a big factor in her stroke.She was in the hospital for 11 days.Then sent to a SNF.Spent 5 days there and I put her in a rehab hospital.The rehab did wonders for her.But,after 3 different times in the hospital,the breast cancer has spread to her liver.So,after all of this,her home health care company says she is not progressing as quickly as she should,so the insurance will not be paying for treatment anymore!What I am wondering is where can I find a book that gives me direction on how to help her with her PT.Thank you anyone that can help.

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She has aphasia and trouble walking.After she started chemo,she became extremely ill.Our oncologist has her on a new medicine and a hormone blocker and it doesn't seem to be affecting her as bad as the chemo treatments.That is why I am looking for some PT exercises and speech therapy because it seems as she is really ready to start therapy.Thank you for your help.I will take all the help I can get.I am her only caregiver and it is really beginning to take a toll on me.I guess she is afraid I am going to leave,but,after 45 years,she should know better.She just wants me around all of the time.

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@sclatt

She has aphasia and trouble walking.After she started chemo,she became extremely ill.Our oncologist has her on a new medicine and a hormone blocker and it doesn't seem to be affecting her as bad as the chemo treatments.That is why I am looking for some PT exercises and speech therapy because it seems as she is really ready to start therapy.Thank you for your help.I will take all the help I can get.I am her only caregiver and it is really beginning to take a toll on me.I guess she is afraid I am going to leave,but,after 45 years,she should know better.She just wants me around all of the time.

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Hello @sclatt and welcome to Mayo Clinic Connect. I want to start by expressing my care and concern for your wife and all she's been through, but also to you as her loving caregiver.

You will notice that I have moved your post into an existing discussion on life after stroke, which you can find here:
– What to do?? Life after a stroke: https://connect.mayoclinic.org/discussion/what-to-do-1/

I would like to bring in members @nicky7 @leslon who may have some perspective to share with you.

I would also like to share that there is a group in the community dedicated especially to caregivers that I thought you might benefit from.
– Caregivers Group: https://connect.mayoclinic.org/group/caregivers/

At this time, are you getting any guidance from her care team on the PT recommendations or are you finding yourself on your own?

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@sclatt

She has aphasia and trouble walking.After she started chemo,she became extremely ill.Our oncologist has her on a new medicine and a hormone blocker and it doesn't seem to be affecting her as bad as the chemo treatments.That is why I am looking for some PT exercises and speech therapy because it seems as she is really ready to start therapy.Thank you for your help.I will take all the help I can get.I am her only caregiver and it is really beginning to take a toll on me.I guess she is afraid I am going to leave,but,after 45 years,she should know better.She just wants me around all of the time.

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Hi @sclatt, Speech therapy is such a great help for stroke recovery. Check out this discussion with about aphasia with other members:
– Let's "Talk" About Aphasia https://connect.mayoclinic.org/discussion/june-is-national-aphasia-month/

It is really hard to be the sole caregiver. I can understand your wife's fear of your leaving even though deep down, she's know you're there for the long haul. She probably worries about being a burden and at the same time wants you around all the time. That's a tough one and makes it really hard on you.

I learned this tip from another caregiver once. Her mom never wanted to be alone. If she had to run an errand or just wanted to go out in the garden for a brief moment alone, she would leave a specific stuffed animal on a chair that her mom would see up waking. If the stuffie was there, the mother knew her daughter would be back and not grow anxious coming out of her nap.

This may not mirror the situation with your wife exactly, but I share the story in the hopes that it might give you some ideas.

Have you been able to find a speech therapist or physical therapist near you?

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@colleenyoung

Hi @sclatt, Speech therapy is such a great help for stroke recovery. Check out this discussion with about aphasia with other members:
– Let's "Talk" About Aphasia https://connect.mayoclinic.org/discussion/june-is-national-aphasia-month/

It is really hard to be the sole caregiver. I can understand your wife's fear of your leaving even though deep down, she's know you're there for the long haul. She probably worries about being a burden and at the same time wants you around all the time. That's a tough one and makes it really hard on you.

I learned this tip from another caregiver once. Her mom never wanted to be alone. If she had to run an errand or just wanted to go out in the garden for a brief moment alone, she would leave a specific stuffed animal on a chair that her mom would see up waking. If the stuffie was there, the mother knew her daughter would be back and not grow anxious coming out of her nap.

This may not mirror the situation with your wife exactly, but I share the story in the hopes that it might give you some ideas.

Have you been able to find a speech therapist or physical therapist near you?

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As a survivor , I’m just seeing this post. I’d like to know what your wife would like to do each day. She may not be progressing fast enough for an insurance company but she should plan her day to her present ability…would she enjoy being outside each day gardening/take a drive/ visit/ go to church? Does she have projects she wants to finish? Anything she can do makes her stronger physically and emotionally! Start at her level each day, build on yesterday and make today happen! Be certain you understand each other. Do not give up for any reason.

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