Huntington's Disease Society of America
My name is Lisa Hall. I found out I was HD+ in 2002. I live in Maine and wanted the best care, I went to Dr. Rosas at Mass.General. I became involved with a study group of non-symptomatic patients. Every year I have a 3 hour MRI, do cognitive testing, math, drawing. I did it for 7 years until they found a brain tumor.
My story. I had been married a short 3 years, had 2 beautiful daughters 2 1/2 and 1 yrs. old. I had been estranged from my "crazy and violent wacky" Mom for 16 yrs. I had grown up with my Dad. It hit me one day I was a mom and I want my mother to know and see her grandchildren. I drove to her work..I expected the clean uniform, nice shoes, well done hair and make up to a T.. What I saw when I walked in was a scarecrow..scattered messy gray hair, no make up, dirty uniform, and old shoes..this is NOT my mother? But it was..overwhelming fear took over when I stood there with her barely even to walk she said "Lisa?" OMG To make an extremely long story short..she told me her Dad died, but every one thought he was a "drunk" but her aunt died of HD..INSTANTLY I felt a fire flame thru my veins my brain and in my heart I knew she had it and so did I..I tested the following week and I have HD..DEPRESSION..OMG I have a husband and two children????OMG the 50/50?!!!!! I DIDN'T know my precious girls could have it.. Panic...I had hid in a box when I found out I had HD. I tried committing suicide 3 times. I got the help I needed, and did a lot of art. I did leave my husband because I wanted him to move on and find another woman and have a happy family so when things hit the fan my kids had a family..not a family falling apart. You feel 'it' but can't describe "it". I dated with the whole idea of never getting remarried never. But I had a date with my Ben who emotionally completed me. The only one in the world 'who "got" me' and who I was. It's amazing an overwhelming warmth of love. I swear people who have gone thru the 5 stages of grieving and have 100% accept HD and now what? My Mom is in hospice with HD, she is a vegetable who can only move her eyes. After I met Ben I found out that I have type2 brain Cancer. I feel guilty. The Doctor's give me 3-5 years with my Brain Cancer I get to escape HD late stages. I feel guilty knowing that here I am with HD and Brain Cancer will take me instead of HD devouring my body slowly. I struggle with that, when I'm with my Mom..she's a vegetable but she knows every thing I say and do. I am ecstatic that I can visit and she know I love her. Now I struggle everyday knowing I won't be around for my girl's when they get tested. It rips my heart out.
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