We had to change the times home support comes. Trevor’s working different hours. Now they come at 10:30 to 11:30 in the morning. Then they come at 1 in the afternoon till 2:30. I am still loving it. Making meals for Trevor when he comes home. It feels good to feel like a wife again. To make him his dinner when he comes home. I am having another good HD day. I am really fallen in love with my Lucky. He is our boy. That’s all we need right now. Last night I was less scared then I had been lately. Tomorrow I volunteer and go bowling. I am always excited to do both. Accept HD for what it is and what it is not. It is not a life sentence. It will not kill us. We don’t have to die anymore. We have a world made for the taken. A life made for the taken. Take your life back. Take your future back. It is our future. It does not belong to HD. This is ours. Fight for your life back. Fight for your dreams back. Fight. Never contemplating giving up. Create a life worth fighting for. Create a future worth fighting for.
Monday, October 6, 2008
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Hello Heather,
ReplyDeleteI love your positive blog. You are the bravest girl I have ever seen.
My family members have HD, but none as young as your family's onset.
I had two brothers with HD. (still have one). Mike was oldest, Mark next. Mark was a couch potato. I mean, like the embodiment of the definition of couch potato. TV, Football, Fattening food, no social life, and beer. Mike was a doer. Helping people, fixing things, making things, playing music, always up. When Marks symptoms started he went down fast. Mike was 3 years older. He stayed healthier for a long time after Mark could not even walk.
I believe it was because Mike got exercise. Mike's wife bought him a little weenie dog right after he quit work. He loved that dog better than a child. Every morning he walked him. 2 miles down the street to the park and 2 miles back. Sometimes he would go in the afternoon too. That walking
was the key to his fighting HD and keeping him alert. Mike passed last month. I saw him two weeks before. He had been in skill care for 8 years. When I walked in the last time I saw him, he smiled and called my name. Mark is still with us, but is frail and weak and has strong coreah. Mike had almost no coreah. I just have to believe it is the exercise that made Mike live his life with HD without giving in to it.
Keep exercising dear Heather. You are so lucky to have such a supportive husband. I hope the Dr. gets your meds tuned so you will not have swings, fear and anxiety.
My prayers are with you and your dear family.
AnDee