suhlut
Posts: 622
Joined: 7/20/2007
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As a person that lives with the 50% odds of developing Huntingtons, i've been watching pinks posts here and in Ask a Master thread she posted..and finding the whole thing rather sickening.
If this is all a ploy, for attention, as it often SEEMS to be.. it angers me that someone would use a Neuroligical set of symptoms in such a way.
On the offchance that she really is looking for help and guidance, i will share my perspective.
If one of my sisters, or brother were coming online to ask if s/he should find a way of forcing ME into getting tested for the Huntington gene.. i'd be FURIOUS!
Now i dont know a whole lot about what other Neuro disease patients face, as i have been studying my own potential "future" with Huntingtons, but i can say that from where i stand its a HUGE mistake to try forcing someone "kicking and screaming" to see a doctor.
i chose, two years ago, to go see a doctor, on my own, MY decision.
i tried to get tested, but the Neuro Doctor here turned out to be an asshole, and he didnt like my reasons for wishing to be tested, so refused to sign me an order for the blood test.
The Doc also told me it would be a huge mistake for me to be tested, because he said even if i got results back saying i was negative, that Insurance companies (both health and life) would forever after be able to refuse me coverage. And so, i gave up trying to be tested, and choose to live in perpetual fear, rather then loose out on insurance options.
Reading pinks posts about her brother, has been upsetting, thinking back about the last ten/ twenty years of my mothers life before she died, and then thinking about what i see as my own symptoms. i have recently gotten to the point where i am again sick of worrying, and i've decided i just dont give a shit anymore about insurance anymore, that i need to know my diagnosis more. So, am planning on finding another doctor and be tested.
BUT, all of this has been my own decisions, and i'd have been angry if a sibling tried forcing me into being tested.
For anyone that doesnt know what Huntingtons is, its a Neurological disease (brain) that is passed on from one generation to the next, through genetics. Because my mother had it, i am at risk of inheriting Huntingtons at a 50% / 50% set of odds. If i have it, my children would have the same 50% risk, but if i DONT, then my children never would. Which means it does not skip generations.
Huntingtons is a terrible disease, and manifests in many ways, loss of speech, loss of muscular control, (arms and legs ect flail about uncontrollably) falling down often, choking on food/liquids..and patients face many many years of the disease, before it takes their lives. Lives lived, like my mothers, where at least the last ten years of her life, were spent in a nursing home, no longer able to talk in ways that can be understood by others (slurred words, and eventually just plain nonsence) no longer able to read, nor write, and eventually no longer able to walk, living in a drug induced haze, for years on end.
as her child, like any children whom watch their parents die, it was hard to see it happening to her, but, its even worse when you are also wondering if THIS is in your future too. i've often had nightmares since my mother died, that i'd also inherited her nursing home "room", and her bed, and her special padded chair. It terrifies the fuck outta me.
Which is why i think its a mistake to do ANYTHING with your brother, other then just TALKING to him. From what i've read, it doesnt seem that the symptoms point to Huntingtons, he and you would have had to have a parent that also had the disease. What it seems more to be, is possibly Alzhimers. So, have lunch on wednesday, and tell him EXACTLY what worries you, what you see as being wrong, LIST them out, and then ask him what he thinks, offer him support and love, for whatever he chooses, but you need to get it out of your head to think you can do anything but let the man make his own decisions. His wife has much more athority over the situation, legally. He is a married adult Man, and has the right, if he so chooses, to NOT know what he has wrong with him.
i wouldnt dream of trying to force any of my 4 sisters/ nor my brother into being tested, no matter that i have decided to be tested myself. They too also live with the 50% chance of getting it, but its NOT my place to try forcing them to KNOW if they have it, or not. My brother decided to be tested, already, and is awaiting the results of the blood test, for 2 to 6 weeks.
pink, if this really is you looking for advice, honestly, and not a ploy for attention, pity, whatever, i hope with all my heart that your brother is fine...
If it IS a ploy, of an attention whore, then shame on you!
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RE: Please Respond -- Symptoms of Neuro Illnesses - 
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