CADASIL Family Forum (since 2007)
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Posts: 5
The test came back positive for CADASIL. The old neuro Doc at the VA that said "they're just chasing their tail" is eating crow and back peddling fiercely. What now?
On one hand, I'm glad to finally know what is causing all my speech, balance and weakness issues.  I'm relieved that I don't have to hear "Sorry, the tests don't show anything". On the other hand I'm scared to death what the future holds. Am I a condemned man at 48? I still have kids at home..what about them.  I guess I need to see a genetic counselor.
Thanks for listening........

Posts: 17
Dear Betchaman,
I am so sorry that it is positive.
There are a few things you MUST do.
If you can work, then work. If you can no longer trust your own decisions, or, as in my case, you find it is difficult to write anything correctly the first time, then see if you
can work part-time.
APPLY for Disability. You qualify in spades.
If you find it difficult to sleep through the night then swallow your pride and take
sleeping pills. NOT Ambien or Lunesta. Bad, bad, expensive stuff.
Dalmane is very old school, is called Flurazapam in generic form and works nicely.
Please understand that you are suffering from little bitty strokes which still lead to
depression. The diagnosis itself can do that.
EAT FRESH foods.
Buy some L-Arginine and USE it. It helps. Buy some anti-oxidents (I recommend Shaklee, Flavomax) and use them.
I had to learn my limits. You will have to learn yours. You can no longer work like you used to.
I used to be able to pick 5 bushels of tomatoes and process them all in one day and take care of four children. Not any more. If I try to work around the house for even 5 hours, I will need to sleep for 12. Really.
Anti-anxiety meds (generic xanax) and anti-depressants really do help. Use them.
These are tools to help your quality of life. Accept them. They DO help.
Try very hard to be gracious. This is a difficult path.
I cannot see why YOU should need genetic counselling. Your children may, if they are planning to have children. But they have done wonders with genetic engineering in Bilbao.
I found it useful to just see a therapist. How did I do that? Well, I asked around found some names and called. My message: I am dying slowly and would like to discuss it. I found one person and she has helped a great deal.
Good luck and keep in touch.

Heather Chepko-Albertson

Posts: 33
I think Heather gave you great advice. I just want to add that there are many possible approaches. My advice would be to read up on what to do after a stroke. If you smoke, quit immediately. Get lots of exercise. A brisk walk for 30 minutes or so a day, every day, is sometimes recommended. The Mediterranean diet is a good choice. A neurologist recommended that I take a statin (Crestor) for high cholesterol and an ace inhibitor (Ramipril) for high blood pressure, even though I had neither, and an 81 mg aspirin once a day.The object is to keep fragile blood vessels in the brain as healthy and clear as possible. I am 64 now and still function well, but I can't know what I would have been like without these measures. It is a rocky road, but know that some of us are lucky enough to have a great life for years after the diagnosis. I hope you are one of them. I wish you the very best.


Posts: 1
Take heart, I was diagnosed with Cadasil at 2011, with a new mutation not reported  before, at first I felt very sorry for my self, but now I hardly think about it at all I am now 73, living by myself, have just finished renovating a villa and travel the world extensively. 
In the beginning I practiced self motivation, but now i don't even think about it. 
So don't think your life is over, just keep on living. 


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