Hi All,
I have been lurking around this site for days, reading all your stories and decided to post my own. I look forward to getting to know as many of you as possible.
My HD story is just beginning. My mother (68 years old) was diagnosed with HD about a month ago. She had been in an aged care mental health assessment centre for three months whilst I tried to find her a suitable nursing home placement. For three months, we heard nothing from the doctors in terms of a diagnosis, until one day when they called myself, and my three brothers in for a family meeting. At that point I thought things could not get much worse. I had been frantic the last three months, trying to balance full time work, part time uni, meetings with nursing home facilities, the VCAT application for guardianship/administration of my mother, countless meetings with solicitors, financial planners….. and then the words ‘Huntington’s Disease’ were uttered.
Since that day, I’ve read up as much as possible on HD, and yes, it all seems to make sense in regards to my mother. Whilst she was diagnosed at the age of 68, I believe that she has been showing signs, at least in the emotional and cognitive categories, since I was a very small child, and I am now 28 years old. My mother was always moody, argumentative, prone to throwing tantrums and being unreasonable and selfish. As a little girl, I’d wait for my dad to come home from work to play with me and read to me, as my mother never seemed to be ‘bothered’ with anything. She could never focus on anything, wouldn’t read anything. I always knew there was something wrong with her, but she refused to see doctors and insisted she was fine and would scream the house down if anyone suggested otherwise. My dad passed away about four years ago (heart problems). I had already moved out. My mother had stopped cooking for the family when I was in high school and stopped washing our clothes soon after. With my dad no longer around, no house work got done, and the house was in a general state of disrepair. My mother then decided to stop showering, declaring that the taps in the house did not work, and lived off nothing but bread and water. By the time she was admitted to the aged care mental health unit, she had not showered in months. Her moods and behaviours became even worse and delusions more frequent. I was always furious with her, why couldn’t she take care of herself? Didn’t she know how much better she’d feel if she made herself something nice to eat, took a shower, did her hair? All this time I thought she was just horrible, lazy selfish and put on this planet to make my life miserable, and all this while she had a disease…..
My mother has inherited the Huntingdon’s gene from her father. He died when my mother was a teenager. My grandmother, who is 98 years old and in perfect mental health, has advised that he died from a stroke. She has never mentioned anything about uncontrolled movements, or problem behaviours, and I can only believe that he simply died too young (approx 48) for him to present any HD symptoms. My grandmother also says that my mother displayed problem behaviours from a very young age, so perhaps this is not only HD at work…..My mother, at this stage, displays very little chorea – only a tiny twitch in the face that is barely noticeable.
As soon as I found out about HD and what it means for myself, and my three brothers, I decided to get tested. I have already given my blood and had one counselling session and I am simply waiting on the results and have been told it will be early next year. As I said before, I am 28 years old, and I have always dreamed about having a family of my own, particularly as my own family life has never been so great. I need to know whether I am HD positive to make some informed choices about my future and whether that future should involve children. I am also doing my Masters in Writing and Literature at the moment and had plans on becoming an academic …however, now I must accept that I might have a very short-lived career. I have a partner who is loving and supportive and who I cannot imagine life without. We have barely left each others’ side in the last 10 years. He is convinced I don’t have the gene, but I think he is in denial and is making this judgement based on the way I am now, and the way my mother is, and the vast difference between us. He is a wonderful person and deserves so much more than to be a carer for someone with HD and miss out on a family life. My parents had a dreadful marriage and I would hate to put someone else through what my mother put my dad through.
My brothers are all in their mid to late 40’s. The age difference is due to the fact that I am from my mother’s second marriage. My middle brother has been tested and wants the results yesterday! He has a very high-level corporate job and has been working so hard to set himself up for an active retirement, and feels it will all be a waste if he starts to develop HD and he won’t ever be able to sit back and just enjoy. If he has the gene, he is going to scale down his workload and take more holidays… He’s already in his late 40’s and is displaying no symptoms, so I feel very confident for him. My oldest brother also did the blood test, but has not progressed with the counselling session, as far as I know. He is starting to stress and believes he is showing symptoms, with shaking and balance, and anger issues, but we have reminded him that those could also be the result of drinking too much … and he is becoming an increasingly heavy drinker. The youngest brother is somewhat estranged from the family. He knows about the HD in our family but has decided not to be tested for the moment as he is too busy. He is a nurse, so it surprises me greatly that he would take this tack.
Whilst I wait for 2008 to come to an end, I think about HD on and off. Sometimes I think I can’t possibly have it, other times I am nearly in tears thinking about how one day I might not be able to read a book, my life’s greatest joy, or write an essay, or even watch TV. I ‘symptom-watch’ constantly … Did I forget something today? Have I dropped anything? Am I acting like my mother in any way, shape or form? I have told no one about the HD in my family and am still deciding which friends and colleagues I feel comfortable in telling. I am so grateful for this site as it makes me realise that I am not alone. Our stories are all so different, yet they are the same. By listening to each other, we can approach an understanding….
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