Badges (1)

About

Member has chosen to not make this information public.

Groups

Member not yet following any Groups.

Pages

Member not yet following any Pages.

Posts (9)

Feb 26, 2018 · Help: I want more information about stroke rehab in Stroke & Cerebrovascular Diseases

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.

Feb 5, 2018 · Cerebellar Stroke - experience/treatment/recovery in Stroke & Cerebrovascular Diseases

My Neurologist told me that my head and shoulders tighten because of Nystagmus in my eye – my head and shoulders are trying to hold my world in focus. I get a humming sound in my ears (sounds like the recycled air noise on an airplace) before the headache begins.

I have to shorten the amount of time I go out shopping and I used to love heading to outlet malls to shop-for-sport for a day. No longer!

it has improved from the early days after my stroke but I can maybe shop for a couple of hours at the mall but not during crazy busy times.

Feb 5, 2018 · Cerebellar Stroke - experience/treatment/recovery in Stroke & Cerebrovascular Diseases

I find shopping overwhelming as well. My Neurologist told me it is called brain flooding – too much to process at one time. It makes me feel like I’ve run a marathan – I get exhausted and I can’t keep my eyes open – need to head home for a nap.

Feb 5, 2018 · Cerebellar Stroke - experience/treatment/recovery in Stroke & Cerebrovascular Diseases

Have you tried Binocular Vision therapy for the Nystagmus with your eyes? Are you working?

Jan 28, 2018 · Cerebellar Stroke - experience/treatment/recovery in Stroke & Cerebrovascular Diseases

Have you tried Binocular Vision Therapy for your vision Nystagmus?

Jan 28, 2018 · Cerebellar Stroke - experience/treatment/recovery in Stroke & Cerebrovascular Diseases

Did you also have a cerebellar stroke? I have cognitive issues only – no physical struggles.

Apr 21, 2017 · Cerebellar Stroke - experience/treatment/recovery in Stroke & Cerebrovascular Diseases

At 48 and relatively healthy, I didn’t fit the typical stroke profile. I have great cholesterol, am a non-smoker, a casual drinker, I don’t have uncontrolled high blood pressure, I’m not a diabetic, and have no family history of strokes.

If you’re like me, you’ve read the Heart & Stroke material and watched the ads on TV. We’ve been trained that if you think someone is having a stroke, act FAST and do the following:

Face – is it dropping?
Arms – can you raise them?
Speech – is it slurred or jumbled?
Time – to call 911 right away!

My daughter thought I was having a stroke when it was happening and administered the FAST test – I passed it. I could do all of these things! That test works for the majority of strokes but not all. A cerebellar stroke, like mine, accounts for only 3% of strokes. MY warning signs didn’t fit the profile.

Instead I had the Three Vs – Violent Headache, Vertigo, Vomitting. Any of these signs coming on suddenly without explanation, alone or especially together, are enough to call 911. Even if your symptoms go away, you need to see medical treatment as you could have had a TIA (mini stroke).

For every minute delay in treating a stroke, the average patient loses 1.9 million brain cells. That is terrifying! It was 4 hours before an ambulance was called to my home the night I had my stroke.

I had felt “off” two days before and paid my Doctor a visit because I felt so strange it worried me. I described it as “feeling like Alice in Wonderland and I didn’t belong”. I now know that sensation is called disassociation and is a sign of a cerebellar event.

My Doctor couldn’t find anything wrong and said maybe I was fighting a virus. So when I suffered my stroke, my family thought I had a bug and checked on me every 30 minutes as I continues to battle the Three Vs. Not until I collapsed on the bathroom floor did they fear the worst and dial 911.