Hey Joanne,
I am feeling that unusual bond already. You are awaiting test results. You sound like you have alot going on in your life right now. Staying busy during that period was vital for me. I'll be praying for you, if that matters. But sometimes I wonder, why pray do I when we know OUR fates were decided in the womb, a long time ago. Why, because it feels like the right thing to do. Enough religion. I just want you to know I am pretty much always available, to chat, if you need an ear... then mine will be here.
hey mary, it is so great your family is so involved. my family is just the opposite. after mom died (13 years now) noone says a word about hd. if they do it is in their own home like me and my husband. there had been so many new discoveries i learned about when i finnally got my head out of the sand and started seeking out info. i felt like i didnt know anything. and now to be a part of this site knowing people from around the world is amazing to me!! My test was on July 9th. results back in 4-8 weeks. i wanted to get tested for years but was always warned (by dad mostly) i would never get insurance, bla, bla, bla!!! after joining the site i realized that all my feelings were normal and ok. i feel closer to some people on this site than friends i have here in town. a very unusual bond, but great none the less!
Hello Joanne,
It is so nice to have your friendship. When my father was sick my family was fortunate to have some really wise people who found out everything they could about the illness. We helped start our local chapter of HDSA and wised up via bulletins, research, and anything we could read on it. They just found out what HD was then. This was around 1970-1971? Daddy had to retire, forcing mother back into the workforce. I was really lucky to have so many family who supported us growing up. Dennis, my oldest brother. Just became a teacher, so he was very comfortable teaching me. He was 24 and I was 7 but I hung on every word he spoke. Knowing that in a few years Daddy would be getting worse?!?1?! Whatever that meant. But I am pretty comfortable now sharing information, because it is in educating ourselves and others we find comfort. I do not have any degrees, couldnt stay in school, but I have vast experience w/caregiving, observing is the best way to learn about this illness. And don't be afraid to get specialists. Regular MD's, in my experience, have very little knowledge. I had a few refer me elsewhere for this reason. As a matter of fact I still don't have a md for that reason.
Thanks for the friend request . . .
Mary
Mary
Mary
Joanne
Mary