Huntington Disease Lighthouse Families

For HD families ... by HD families
 

Just introducing myself

Posted by sray1198 
Just introducing myself
February 14, 2007 07:59AM
Hi,

Just wanted to introduce myself.
Say thanks to Marsha and Steve for running these 2 sites. These are lifesavers.
I was on Hdlighthouse off and on for 4 years, when I was diagnosed and kept up with Scott's adventures. My name is Scott also. But I go by screen name of Sray1198.
I am 51, CAG 44, 17 years symptomatic. Had been a huge fan Of Scott and exercised 4 years, not quite like him. Since turning 50 I have had more problems doing as much exercising.
I lived in so CA for 25 years, now temporarily in Fl. If MIraxion is approved I may go back to Ca to get GHPP they pay for prescriptions completely




Re: Just introducing myself
February 14, 2007 03:38PM
Hey Scott, my name is Louise,im 23 and from Scotland. I tested in August and thankfully it was negitive, im the 1st in my family to test neg frm as far back as i know. Its nice to meet you!

Louise x
Re: Just introducing myself
February 14, 2007 05:11PM
Hello Scott,Louise and everyone,
I figured I would introduce myself also. I have been coming to this forum for over a year and enjoyed the chat room for the first time last night.
My Dad and I have HD and my grandfather also had it. My Dad is 50 and I am 31. Dad's cag is 42 and mine is 40, my grandfathers was 39.
I am dealing rather well most days about my symptoms and being a stay at home Dad because I am on Social Security disability. My Symptoms are less physical and more cognitive and emotional.
I live with my very wonderful fiance and her son that's 9 and daughter that's 7. We have a baby girl on the way.
I am on Effexor and it seems to help my moods and I'm trying to get into the swing of taking coq10 and creatine.
Although HD is in the family it isn't discussed and there is a lot of denial. I understand that is how some deal with things, but it leaves me feeling like I am affected and out of work for a disease that doesn't really exist.
I love this website and others for getting the word out about HD.
Re: Just introducing myself
February 14, 2007 05:58PM
howdo scott,my name is billy i joined the site only 4 months ago and its been amazing.i hope we chat soon take care mate
amb
Re: Just introducing myself
February 14, 2007 08:04PM
Hey Scott , my name is Amber. My husband has HD with a cag of 51. I think the sites are lifesavers too!
take care
amber
Re: Just introducing myself
February 15, 2007 08:48AM
Thanks, new people, for introducing yourselves. I've met some of you in the Caht and its nice to know more about you.
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