Huntington's Disease

[fhm2]

I have a friend who has been diagnosed with HD at 33yrs. Her father and grandfather both had the disease and she watch her father die from it. She knows what's coming but we, as friends, do not. We all want to be there for her although we know there is a lot that we don't know. Can anyone give us some idea what to watch out for.

She's always been clumsy but it's even more noticable now. Another friend noticed her behaviour and asked me if she had taken E?! Apparently there are similar symptoms.

She has been told that it's likely she has had symptoms since she was 28yrs. Is this relatively early??? and if so how long before she is really going to need help? 5,10, 15,20 yrs????

I know each case is different and these are general questions but we are all trying to set ourselves up for the future and i'd hate to talk about things that she knows she won't be around for.
Ta
L

[nikkiredsox]

Hi, i thought i would respond to your note. Although my case is not exactly the same it is similar. my boyfriend was diagnosed with CADASIL - which has some simlar features to huntingtons - its the same genetic features - autosomal dominant - gets passed through families, 50/50 chance that offspring will have it if a parent has it. pretty scary stuff. I am on an interesting journey in life with this person, its very hard, as yes, we do not know what to expect. the best advice i can offer is to BE THERE for your friend, in whatever capacity you can. the worst thing i find is when people ignore the issues, pretend its not happening, but at the same time you want to create a balance by not reminding the person too much. i find that talking about the here and now events and whats good about today helps. being with people who can nurture your deeper side, as inevitabley this experience leads to a whole new spin on life. the whole thing is how do you deal with what you know, - when your future is unknown.
please feel free to contact me again.

[jahn]

I'm not sure any of us really knows what to expect. I watched my father-in-law be taken by this dreadul disease and his sister (both dying in their 40's) My husband is 33 and was diagnosed 3 years ago. Subtle symptoms surfaces a few years before. Symptoms can be likened to those of people suffering from the effects of mind altering drugs and alcohol (there is a market for shirts that read 'I'm not drunk, I have H.D.') My father-in-law was diagnosed in 1994 and died in 2006. His sister was also diagnosed in 1994 and passed in 2001. It is a progressive disease and you don't really know how much time you actually have. We live each day to the fullest. Back in 2005 (after the inital shock- odd we KNEW the outcome, but, the feeling of numb you get when the diagnosis is read to you.....) we came up with his 'bucket-list' and as long as he is still able to work we try to cross each thing off his list. We also try to save up enough so that he won't have to go into a nursing home until absolute need be.

My husband is a patient of Dr. Hersch- just about everyone in the H.D. world knows or knows of of him- he can't give concretes as far as timeframes so......
LIVE, my advice, live. Appreciate life. It is a gift. Love and support eachother. It's such a hard road to go.

[Heather Dugdale]

I am 25, am experiencing Huntington’s disease symptoms. I am in home care. My family is one of the few in the world who have early onset. I was a Nurse Assistant before I got sick. I made a positive, comprehensive website. It has a blog, Articles, care giving tips, research, ways to fight brain fog, myths, my story, my families’ story, history, ways to have a positive testing experience, and ways to cope. I also put on there the poems I got published in the horizon. I now have my personal support group. I have won more awards in a short period time than any other site, 64. 25 are international Awards. I am on the Top Disability/ Disease Blog List. I also have won the Disability Network Award.

[moderator note: website address has been removed]