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mkf1 (@mkf1)


Stroke & Cerebrovascular Diseases | Last Active: May 1, 2019 | Replies (32)

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I must be in the wrong place, I cannot believe that in the last 2 years I am only the fifth person to add something to the Mayo Clinic Connect stroke profile. I have had the privilege of living with 2 strokes for almost 4 years, that just not seem possible. When I was discharged from the hospital they did not know if I would need Hospice or Palliative Care. I cannot qualify for any more therapy because I am too high functioning. I live by myself and do not drive.

What I would like is another high functioning stroke "victim" to share what it is like living with a stroke or strokes. Is there anyone out there?


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Replies to "I must be in the wrong place, I cannot believe that in the last 2 years..."

Welcome. You're among friends here. I had a well known friend who was able to recover from a stroke and even walk a half marathon after he did that. His story is very inspirational and I read it not only because I knew him personally, but also to help me cope with my fears of having my own surgery (which was spine surgery at Mayo). I'm talking about Pete Huttlinger, a gifted musician who was born with a very serious heart defect which ultimately caused a stroke later in life. He and his wife Erin wrote a book about his journey which talks about his struggles and victories and his choice to embrace the advances in medicine that saved his life several times. He was the first person to have an accessory heart pump installed and with that assist, he did train for and complete a half marathon. Pete was a skilled composer and performer and toured with John Denver and a really nice guy. His book talks about how he had to relearn how to play the guitar after his stroke and his thoughts about looking for the positive things in his life. You can find out about him on his website and there is a lot of YouTube on his music performance. I would recommend checking him out.

@mlmcg, there are several stroke-related discussions in the Stroke & Cerebrovascular Diseases group. Here are a few more to explore:

– Cerebellar Stroke – experience/treatment/recovery https://connect.mayoclinic.org/discussion/cerebellar-stroke-experiencetreatmentrecovery/
– Stroke survivor – always hungry https://connect.mayoclinic.org/discussion/stroke-survivor-always-hungry/
– Stroke and discharge from hospital https://connect.mayoclinic.org/discussion/stroke-and-discharge-from-hospital/
– Help: I want more information about stroke rehab https://connect.mayoclinic.org/discussion/help-4/

What type of stroke did you have?

Yes. I have had two strokes and was diagnosed with CAA. CAA (cerebral amaloid angioplasty) is a brain disease of the brain where blood vessels in the brain become weakened because of protein deposits. At this time it is not curable. I have a ten percent chance of having a bleeding stroke every five years. The only thing that I can do to try a prevent a reoccurrence is to keep my blood pressure as low as possible and don’t take any sort of blood thinners including baby aspirin. I have been very lucky and consider myself as being a high functioning stroke victim. Good luck to you in the future!

Yes, I am a high functioning stroke victim. I had my stroke about 1 1/2 years ago. I was also born with Cerebral Palsy. If you need daily assistance, contact your local United Way information and referral service, call a local In Hpme Assistance Agency, or ask your doctor for a referral. Assuming that you have insurance, contact your insurance company and ask for an evaluation for personal assistance.

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