In the Future

There are many studies and research going on around the world to be able to "cure" CADASIL. There are many theories about how to go about it, what the differences are between CADASIL patients and other stroke patients that makes them different and makes it a "syndrome" or "disease". They are working on dna solutions, medications, intermittent MRI's, and monitoring blood pressure levels in patients juxtaposed against their strokes and overall mental health. However, this is still a disease that is widely unheard of and that gets treated wrong when a patent is taken into the emergency room and to the hospital. Most doctors have never even heard of it, and are left to look it up when we walk into the ER so they understand what they are dealing with.
The last time my father was in the hospital they gave him shots of heparin that every stroke victim receives as SOP now. This shot was to keep my fathers blood from clotting because some stroke victims loose the ability to move around, or move certain parts of there bodies. However, with CADASIL it is different, it is the stroke after stroke that robs you, not the one stroke that you just had. My father was completely able to move, and get around on his own, and shots of blood thinners is the worst thing he as a sufferer of CADASIL could have as it could have caused him to bleed out in his brain! CADASIL is different from other strokes, if you get too much blood thinner you could die, it is the reason you should not have TPA, or the stroke drug, it could also cause death after a stroke to a CADASIL patient. We told the nurses to stop the heparin and talk to his Neurologist, He was not happy about the heparin either. Now Dad's chart says that whenever he is in the hospital all drugs have to be approved by family, because he is not aware enough to be sure of what he is taking or if he should be taking it or not.


For those who are interested here is the CADASIL Foundation website. It contains some interesting information about fundraising, research, genetics and more.
http://home.earthlink.net/~cadasil/index.htm

Hereditary

So CADASIL is hereditary. There is a test that can be done to see if I have it, but I decided, when my dad started to decline very fast, that I would not get tested. I decided that knowing would just put a rain cloud over everything I did and experienced. If I started to feel strange one day I would wonder if I was having a stroke, because i KNEW that one day this disease would be descending upon me.
Not knowing however, creates an issue of "maybe, maybe not". My future might be the one that I had always envisioned of getting older, retiring etc., or it will be one like my fathers, of confusion, frustration, and decline. I have tried to live my life as more of a lesson learned from what has happened to my dad. Living for today and such. But I cannot seem to forget what my tomorrows may hold and the fear what it brings.

Enjoyable Therapy

My dad has found something that qualifies as therapy that he finds enjoyable. He has begun archery. It started out as something he and his Senior Companion would do once a week as what mom and I call "man time". But it developed into something more than that as he became more enthralled with shooting. Between the strength needed to pull the bow back, the concentration needed to aim, and the process that is repeated throughout it is turned out to be something that is really good to stimulate his brain and body. The place where he has been practicing is aware of his condition and has been kind enough to let he and his Senior companion in to the shooting range for free a couple times of month.