Huntington Disease Lighthouse Families

For HD families ... by HD families
 

Brother with HD

Posted by MaeBCrabby 
Brother with HD
June 16, 2014 04:46PM
Well I have read but so far had not posted. Its all so difficult and emotional. My siblings and I were real good at ignoring our history and sure
seemed to work. But then my cousin was diagnosed and jumped off a bridge so we had to think about it awhile then went back into the
pretend mode. Now my brother has it and was officially diagnosed in fall of 2012 so no more pretending- we are fortunate that we are older.
He is 57, I am 61 and another brother at 56. Also a brother that passed of cancer at 61 and a sister that passed at 3 yrs old both from my mom's first
marriage. My brother has had "life" issues, drugs, jail, no drive, I agreed to let him come live with me thinking it would motivate him to get a
job. He did for a little bit but lost that job and just couldn't find anything, I was so frustrated at him. He just didn't seem like he could comprehend things or
fill out applications. Didn't think of HD, something happened and I couldn't take it so he went to a mission to get help, which really did help him but
its there that he admitted he has HD and decided to test. I saw some fidgety movements but also thought I would just leave it alone unless he said
something. He finished the program and is now back with me. Needless to say its been hard for him and for me.
Randy started running when he was diagnosed and ran 4 - 1/2 marathons before he just couldn't continue.
On top of everything he has heel pain and takes pain killer and other drugs related to HD. He has been able to handle
things but it seems like things are changing faster than we had both hoped. I have not gone to his doc appt yet he seems to want to do that. Think that will
change soon, he is on the VA system and has actually gotten good care.
That is all I will say for now so many bottled feelings and so much more going on!
Involved with HD support, on the board. Made some friends there, its just all so hard.
- We both have faith, active in church which helps us both.
Re: Brother with HD
June 17, 2014 08:39AM
Welcome. You'll be among friends here. Talk to us anytime you feel like it. If your brother's heel pain prevents him from running, he could try using an exercise bike or some other way to get aerobic exercise.

Will
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