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Trippy
13-06-07, 12:20
Now I have only met the guy once so he's not a close personal friend outside this and the clubs website, however I was really shocked sometime ago now to hear one of us was given the news that he was suffering from this disease.

I have thought about him and what must be going through his mind each and every day alot since he told us, and am cheered by the humour he has shown.

Can I may suggest that anyone organizing an event in the future may consider the research into this disease a worthy cause for their money raised.

It's only an idea, he seems like a nice guy and someone who I'm sure would never suggest such a thing himself even though this being a condition that can be passed through the family he must have worries for the future welfare of others as well as himself.

I knew nothing of it before he told us his news and I bet it's one of these slightly over looked charities that could benifit from a little extra cash and their profile raised.

What on earth made me think about it sat in the bath god knows :confused:


http://www.hda.org.uk/

Jaq
14-06-07, 10:58
Jim, that's a fantastic idea....count me in.....:clap

DavidHale
14-06-07, 11:58
I'm slightly concerned that you were sitting in the bath thinking about me... :eek However, I really do appreciate your thoughts and concerns - I did break up a bit when I first read the post yesterday. :o

I've had a lot of information since this post, (http://www.ukgser.com/forums/showthread.php?t=104961&highlight=huntingtons) and I was thinking of posting an update anyway. My original post was made on the same day that I received the news, and I was a bit all over the place to say the least. This sort of stuff 'doesn't happen to me'. Only happens to 'other' people.... Shit Happens as they say...

My clinic is at Addenbrooks Hospital in Cambridge, and is part of the wonderfully titled "Brain Repair Centre" :rolleyes: . The staff there have been absolutely superb - the NHS often gets a drubbing from all and sundry, but I have been treated with nothing but superb and appropriate care and professionalism all the way through. Couldn't ask for better treatment in any way.

So what have I got? I've had a predictive test which shows that I have the Huntingtons gene. The symptoms haven't shown themselves... yet. When I originally posted I thought it had started, but it seems that was a bit premature. Just shows how all over the place I was at that point.... There is no way of knowing when they will show - it may be next week, it may be in 20 years time.
The symptoms, when they do show, are very wide ranging. Physically it will be an uncontrollable and unconscious tremble, involuntary movements, poor balance leading eventually to an inability to swallow and virtual incapacity etc. Mentally the symptoms include depression, mood swings, irrational thoughts and memory loss etc. Unlike a disease such as alzheimers there is no loss of cognitive ability. The symptoms develop (usually) over a period of years as the affected part of the brain (the Basal Ganglia) gradually disappears. If you look at the brain of someone with severe Huntingtons there are voids where the Basal Ganglia should be - it just destroys itself.

So what's next? In the autumn I will return to the clinic to discuss the appropriate research programs to join. Whilst joining is obviously voluntary, it seems essential to my way of thinking. This is partly because although the numbers of sufferers is relatively small compared to other diseases (approx 5-6000 in the UK) it is still a lot of people and partly because there are relatively few people in my position of knowing I have the gene but also knowing it hasn't manifested yet. This makes me an ideal subject for research - hopefully to find a cure and prevent it coming out!!

Trippy, you're right on a couple of points - this is a slightly overlooked charity, and no, I wouldn't have suggested anything either - seems a bit 'selfish' compared to a lot of other worthy causes. It's overlooked for a number of reasons - it doesn't have the 'ahh' factor of cute kids or fluffy bunnies, and it doesn't have the numbers of sufferers that something like cancer has in order to generate a momentum of it's own. But now the subject has been raised I will suggest something at some point. Don't know what, don't know when but it will be after I've been allocated to the relevant research programs and I have something concrete to hang the 'give me your feckin money' tag to!

Now, stop thinking about me in the bath and hopefully I'll see a load of you at the Hog Raost. So long as I ain't dead by then! :dabone

sparkplug
14-06-07, 12:30
I'm ten minutes from Addenbrookes David, so if you fancy meeting up when you're next up...



I can try your aerostitch on for size :hide

Uinneag
14-06-07, 13:47
I was thinking about you in the bath too:o

Trippy
14-06-07, 13:56
Jim, that's a fantastic idea....count me in.....:clap

I hadn't actually thought of anything, being a lazy git it was merely a suggestion for others to remember this charity when organizing their events.
But you have me thinking now...

Clive
21-06-07, 11:39
Huntington's hope from lab sheep (http://news.bbc.co.uk/1/hi/sci/tech/6222250.stm)

DavidHale
21-06-07, 12:08
:thumb2 Thanks for that Clive!