I just received an email from Douglas Lowell, President of Find a Cure Panel for debilitating diseases including stroke. Here is what he said:
Subject line: Cryptogenic stroke (which is known as a stroke of unknown cause) qualitative research
Find a Cure Panel specializes in patient research for rare and serious diseases and conditions including strokes.
Douglas Lowell says, "Patients
who have no idea what caused the stroke and the doctor lists 15 reasons
but can’t settle on one, and nobody agrees…that’s cryptogenic and as
long as they do not have AFIB, then they qualify."
In the next few weeks, FACP has some patient and caregiver research for people who have suffered a cryptogenic stroke (which is also known as a stroke of unknown cause) but have NOT been diagnosed with AFIB.
It’s very easy to participate. It’s one confidential and anonymous call
with one moderator talking about your experience. FACP gives you a
1800 number to call in and schedule the call at your convenience.
To qualify:
1) You must live in the US;
2) You must have suffered a cryptogenic stroke (stroke of unknown cause)
3) You must be over the age of 50
4) You must NOT have an implanted cardiac device (ie. Monitor or pacemaker)
5) You must NOT have been diagnosed with AFIB
6) Must NOT be using Veteran’s insurance.
If you do the call, FACP will donate $100 to a non profit of respondent choice.
If you are interested in participating, please email us at info@findacurepanel.com and reference cryptogenic stroke.
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As my grandmother used to say in her broken English, "Oy. It couldn't hurt."
I live a life of peacefulness. I'm not rich and don't want to be. I am a Goodwill addict. And I've never accepted the stroke fully, but I'm close, getting to recognize that I am competing with myself--one more step to climb, yet another minute on the bike, an additional hour standing.
I have solitude now, but I'm not lonely. When it's quiet in my apartment, I am thinking all the time--of this blog, another book to read, another book to write. And the ten things I learned about living as a stroke survivor. Here they are:
1. I find people staring at me, like an oddity of sorts among the "normals." I used to return their stare, angry and maniacal, but now, I like myself enough to not care.
2. I'm worthwhile, making a contribution, albeit small, to society at large, by giving my knowledge about strokes to anybody who affords me the opportunity to speak. There is always a stroke group who loves to hear the stories behind a stroke survivorship.
3. I pursue my love of reading to keep my brain at optimum level. If my eyes tire and can't read the words on the page, I use audiotapes.
4. I always use the computer since I am a writer. But you don't have to be a writer to stay in touch with the world via the computer, with CNN or Google news, for example. My iPhone and my iPad do the same thing.
5. The last cry for help was the last. Having Life Alert, a direct connection to the emergency crew by pushing a button on a necklace that's always around my neck, makes me and my sons more comfortable. The cell phone, if it's charged, works the same by calling "911." (The operative word is "charged"!)
6. Most of my falls were in my kitchen. But now, I bought a used wheelchair and a new cushion that I keep in my kitchen to prevent falling--sit, retrieve, and stand.
7. I speak from the gut now to medical professionals, telling them, for example, if they missed a question on the "new patient" form or if they don't let me finish my thought, always preceded by, "With all due respect...."
8. I like to be organized to simplify my life and to accommodate all my OCD (which many stroke survivors have) tendencies. So I have a file cabinet and a desk which I bought at Goodwill for $15.
9. I set the alarm on my iPhone when I have to take medication by speaking to Siri, the intelligent personal assistant that comes with Apple products. It takes the guesswork out of remembering. I also set the alarm to keep from napping longer to avoid insomnia at night.
10. I live each day with appreciation for the love of my sons, their respective significant others, and the friends I have obtained coast-to-coast in America and around the world.
As I say in the intro to the blog, "I don't embrace the stroke -- not now, not ever -- but I accept it
because I have two options: live with the stroke or... well, you know
the alternative."
I am here, alive, and trying my damnedest to keep it that way for a long time.
