Cerebellar stroke experience, treatment, recovery - want to dialogue

Posted by strokesurvivordynamo @strokesurvivordynamo, Apr 21, 2017

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.

Teresa, Volunteer Mentor | @hopeful33250 | Apr 21, 2018

Hello All:

Many of our Members have posted about post-stroke recovery and some of the discouragement that can happen as you adjust to your "new normal." In the most recent issue of Brain & Life (free subscriptions are available to anyone interested in receiving this publication by regular mail or email) there was an article, "10 Ways to Manage Post-Stroke Depression." Like me, I believe you will find this article very informative. Here is the link, https://www.brainandlife.org/the-magazine/online-exclusives/the-neurologist-is-in-10-ways-to-manage-post-stroke-depression/

I found the points of staying active, physically and socially, to be especially interesting. There are many stroke support groups and I was wondering how many of our Members have been involved in a group and would like to share what goes on in their group and how it has helped them.

I look forward to hearing your comments.

Teresa

Teresa, Volunteer Mentor | @hopeful33250 | Apr 19, 2018

In reply to @hopeful33250 "Hello @kleo4 and welcome to Mayo Connect I can only imagine what a frightening experience this..." + (show)

@kleo4 Hello Karen,

I have been thinking about you and your partner. As I noticed from your last post, he had a doctor's appointment on the 11th. I am hoping that he got some information that has put your mind at ease and has offered him a good strategy for recovery.

When you have time, I would love to hear from you again.

Teresa

maryar | @maryar | Apr 11, 2018

In reply to @hopeful33250 "Hello @thinkitseeitdoit @maryar @mikejack I want to thank you all for sharing your experiences about stroke..." + (show)

Ugh, depression stinks! I think that most therapists say after a stroke it is harder to hide your feelings, they are just all out there! I have found this to be true of my world now. I do take an antidepressant, the first one took was a disaster, but the second one is better. Not great, but better.

thinkitseeitdoit | @thinkitseeitdoit | Apr 11, 2018

In reply to @hopeful33250 "Hello @thinkitseeitdoit @maryar @mikejack I want to thank you all for sharing your experiences about stroke..." + (show)

My heart goes out to you, its a hugh learning cruve

sistertwo | @sistertwo | Apr 11, 2018

In reply to @hopeful33250 "Hello @thinkitseeitdoit @maryar @mikejack I want to thank you all for sharing your experiences about stroke..." + (show)

I have recently written some of our experiences with my mother in the https://connect.mayoclinic.org/discussion/cerebral-amyloid-angiopathy/ section. It seems a lot of issues are similar.
I give you so much credit for getting help with depression. I feel it has been a vital part of my mom's recovery. We had to add an additional medication (for it) last fall. A month or so ago she started refusing some of her meds, and it turned out to not be a good thing (messed up cognitive thinking even more and she started imagining things again). A couple weeks ago we had all her meds evaluated and will have a re-check the end of the month. It is so important to stay on top of what's working and what is not. Keep taking good (and smart) care of yourself!

thinkitseeitdoit | @thinkitseeitdoit | Apr 11, 2018

In reply to @hopeful33250 "Hello @thinkitseeitdoit @maryar @mikejack I want to thank you all for sharing your experiences about stroke..." + (show)

Has a anybody talked about depression, i know i had to get some help from my doctor to get over mine. I also have just come to realize as my 1 year approaches its harder and harder to stay excited and if i let it get me down it will. Im aware of it, i won't hesitate seeing my doctor if i need to. Its hard enough to recover from this stroke i don't want to fight depression.

thinkitseeitdoit | @thinkitseeitdoit | Apr 11, 2018

Nobody told me anything, i checked out of the hospital after 14 days and crawled on my stomach to get around when i first got home. I had to learn everything all over again. I have my days filled with therapy, there is no guide book, you have to be pro active. If you want to know what therapies im doing and what I've found works the best for me, let me know. I got go i have another apptoiment at 1

kleo4 | @kleo4 | Apr 11, 2018

In reply to @hopeful33250 "Hello @kleo4 and welcome to Mayo Connect I can only imagine what a frightening experience this..." + (show)

Thank you, Teresa. We are headed there this afternoon. I will let you know how it goes. Matt, my partner, is anxious about it, too. I hope we will get good news.

Karen

Teresa, Volunteer Mentor | @hopeful33250 | Apr 11, 2018

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

thinkitseeitdoit | @thinkitseeitdoit | Apr 10, 2018

In reply to @maryar "Hi, I had my stroke 9/11/2017. It has been almost seven months now. I feel like..." + (show)

Yes that make sense. You never will be the same. You will be better. You dont need to think about the future. Just make it through each day.

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