Cerebellar Stroke - experience/treatment/recovery

I suffered a Cerebellar Stroke in Dec 2015 in my 40s and am interested in connecting with other cerebellar stroke survivors to share our experiences, testing/therapy options, struggles on the path to recovery.

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

@hopeful33250

Hello @kleo4 and welcome to Mayo Connect

I can only imagine what a frightening experience this was for you and your partner. You mentioned that you are scared that this will never go away. What has your partner's doctor said regarding the recovery progress for this type of brain bleed? A lot of people have had good results with physical and cognitive therapy after a stroke or brain bleed. When you see the neurosurgeon this week, these are good questions to bring up.

Here is a link to a Mayo website that discusses stroke rehab, https://www.mayoclinic.org/diseases-conditions/stroke/in-depth/stroke-rehabilitation/art-20045172. 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 hope that you and your partner are able to put your fears aside for just a time until you have the opportunity to talk with the doctor.

I would love to hear from you again. Will you post again?

Teresa

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@kleo4 Hello Karen:

I hope that your partner is experiencing some recovery from his stroke. Did his doctor suggest physical, occupational or cognitive therapy?

I would enjoy hearing from you at your convenience.

Teresa

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@hopeful33250

Hello @thinkitseeitdoit @maryar @mikejack

I want to thank you all for sharing your experiences about stroke and recovery. I know that this will be helpful to @kleo4 @gmike and others who come to this discussion group to understand that they are having similar experiences and feelings of others who have walked down this road of stroke recovery.

I would appreciate any of you sharing what therapy, advice, etc. that you have received that was the most helpful to you in your recovery. Was PT, OT, cognitive therapy involved in your post-stroke therapy?

I look forward to hearing from you again and helping me better understand the recovery process.

Teresa

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Hi @thinkitseeitdoit, people recovering from stroke often experience depression. I encourage you to start a new discussion related to stroke and mental health. You might also be interested in connecting with @sipher. She writes about her emotions of anger and sadness as well as depression when stroke stole many abilities from her.

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@hopeful33250

Hello @thinkitseeitdoit @maryar @mikejack

I want to thank you all for sharing your experiences about stroke and recovery. I know that this will be helpful to @kleo4 @gmike and others who come to this discussion group to understand that they are having similar experiences and feelings of others who have walked down this road of stroke recovery.

I would appreciate any of you sharing what therapy, advice, etc. that you have received that was the most helpful to you in your recovery. Was PT, OT, cognitive therapy involved in your post-stroke therapy?

I look forward to hearing from you again and helping me better understand the recovery process.

Teresa

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As interesting as that sounds i better pass. I've got my hands full. My insurance "First Choice" canceled my therapy, after a review. The funny part "it's always something". I've been doing everything possible to return to work. This just threw a wrench in the mix. Still can't get my balance back. Whatever, i will make it work. I have learned i can overcome the effects of this stroke but the key is you got to want it, i mean you really got to push yourself. There is more involved its deep. Native American Indians taught me the power of prayer and how to pray in the sweat. You have to impress upon your mind you want this to happen. You don't wait on, other people, you don't take a wheel chair, you struggle, your mind will feel your pain. Your mind will react. Its emotions that creates new Neuro path ways. The sad part, the majority of people don't know the power of the mind. Let alone how it works. Anything is possible. Meditation is a good staring point. I suggest Muse if they need to learn how. Have a good day.

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@elizabethmm

My Stroke was about two years ago, I had no or little symptoms at the time, except that I suddenly was very dizzy and my Eyes didn’t go where I wanted them to go … today was an especially bad day, I had to leave a card store where I looked for cards, I got nauseous and dizzy, barely made it out of the store … anyone else with those Issues .?

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I thought it was just me, never discussed it with my doctors, great to understand why. I find that it is more intense the more active or busy I am, not as bad when I have had a day to shut things down. It's been just about 6 months since my stroke, still get that tense feeling in my shoulders when this comes one, trying to learn how to relax and hoping it will go away at some point.

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Finally found a place where I can relate! I had a cerebellar infarction the first week of January. The doctors still have not found the cause, gone through a barrage of testing over the past few months and I keep hearing I am a healthy guy that had a stroke. They think it's likely due to periodic AFIB, I have a Medtronic iLinq device implanted monitoring my heart, nothing as of yet. My right side was impacted and I have been busting my butt to get back to normal. I know I am fortunate it is not worse (not lucky, the 20 year old in Florida that won millions in the lottery is lucky!) and I am finding that I can do almost everything I was able to do in the past, just takes a little more energy and patience. I find my coordination is not as good and I am a little more stiff in my right arm and leg by the end of the week. I try to shut down for a day on the weekend, which helps. I play the guitar and have incorporated playing into my rehab. I have the strumming thing mostly back and I am making good progress getting back to where I was. Playing for long periods is still a challenge, will play for 30 minutes then have to stop due to my muscles in my right forearm and shoulder getting tight. I never had to think about my right hand when playing, so I lose the beat from time to time when having to think about strumming, chords and singing at the same time. Holding a pick is also a challenge. I still use 2-sided tape to hold the pick to my thumb.Fortunately, I play for pleasure, not for a living. If there are any guitar players that want to talk, feel free to reach out!

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Hello @hammondm99

I see that you have recently started posting on Mayo Connect – welcome! I am so sorry to hear of your stroke. I can only imagine how difficult it would be for you, a healthy person, to have such an experience and not be able to find a cause.

You have mentioned the stiffness – have you received any physical therapy or occupational therapy since your stroke? What sort of exercise program have you been involved with?

How wonderful that you play the guitar! Music is a great way to heal the body and the mind.

Please keep in touch, and post when you can. I look forward to hearing about your progress.

Teresa

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I have been doing in home physical therapy that has been focused on the areas that I have had the most difficulty with. I went to a physical therapist for a short while, then started a physical therapy program in house using resources available online. I am a self motivated person, so this seemed to work best for me. I would not recommend this approach for everyone, I have come across a few stroke survivors that have found ways to get around their challenges rather than work to improve. The key for me is I don't take short cuts to work around my challenges, trying to get back to where I was versus changing how I do certain tasks. I can't tell you how many times I spilled my coffee in the morning or the dog's water bowl over the past 6 months because of the lack of coordination in my right hand!

I have a 20 – 30 minute exercise routine that I now focus on mainly during the week, It took about 5 months to improve enough to get back into projects on the weekend that are a little more physical in nature than my PT and require me to use fine motor skills, so I skip PT on the weekends so I don't get overly tired, causes me to get stiff and uncoordinated when I do.

I have also incorporated the guitar into my PT. I started with just getting comfortable with strumming again, moved on to doing basic scales to improve the fine motor skills now I am probably 85% of where I was pre-stroke, I am hoping to be 100% by the 8 month mark from my stroke. Playing is a daily routine that lasts for at least 30 minutes.

I did not have any formal occupational therapy, once again, did it all in home. Started by learning to write again, using a mouse, using a keyboard and so on. I am fortunate to have an office job, so I am forced into a daily occupational therapy program!

With my exercises, when I get comfortable in a certain area, I change it up a bit and move on to the next challenge. The next big challenges are getting back to running and being able to hold the guitar pick without 2-sided tape.

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@hammondm99

I have been doing in home physical therapy that has been focused on the areas that I have had the most difficulty with. I went to a physical therapist for a short while, then started a physical therapy program in house using resources available online. I am a self motivated person, so this seemed to work best for me. I would not recommend this approach for everyone, I have come across a few stroke survivors that have found ways to get around their challenges rather than work to improve. The key for me is I don't take short cuts to work around my challenges, trying to get back to where I was versus changing how I do certain tasks. I can't tell you how many times I spilled my coffee in the morning or the dog's water bowl over the past 6 months because of the lack of coordination in my right hand!

I have a 20 – 30 minute exercise routine that I now focus on mainly during the week, It took about 5 months to improve enough to get back into projects on the weekend that are a little more physical in nature than my PT and require me to use fine motor skills, so I skip PT on the weekends so I don't get overly tired, causes me to get stiff and uncoordinated when I do.

I have also incorporated the guitar into my PT. I started with just getting comfortable with strumming again, moved on to doing basic scales to improve the fine motor skills now I am probably 85% of where I was pre-stroke, I am hoping to be 100% by the 8 month mark from my stroke. Playing is a daily routine that lasts for at least 30 minutes.

I did not have any formal occupational therapy, once again, did it all in home. Started by learning to write again, using a mouse, using a keyboard and so on. I am fortunate to have an office job, so I am forced into a daily occupational therapy program!

With my exercises, when I get comfortable in a certain area, I change it up a bit and move on to the next challenge. The next big challenges are getting back to running and being able to hold the guitar pick without 2-sided tape.

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@hammondm99 That all sounds great! Your motivation is undoubtedly your biggest asset to recovery. Are there any online resources in particular that you would recommend?

I hope that you continue to improve.

Teresa

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I pulled most of my information from YouTube. I would search for Cerebellum Stroke Exercise and would look for exercises that would treat the area I wanted to focus on. Amazing how many videos there are out there.

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Hello @hammondm99

Thank you for that information about YouTube exercises for stroke rehab. This might be helpful to people who do not have insurance coverage for rehabilitation. Here is a link to some of those exercises, https://www.youtube.com/results?search_query=Cerebellum+Stroke+Exercise

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