Dear all,

My dad's test results were positive for a 'medium' form of HD. He's 71... late onset HD is in family history on his dad's side, but his father died of stroke without clear evidence of HD... but there are three siblings of my grandfather's (dad's dad) and a few offspring of these who have been diagnosed and died of HD. Sorry for the complex history, but it's been hard to face the denial issues because the type of HD that's in my family is such a 'late-onset' type (emotional/cognitive features not present till upper 60s)... plus my father has had other neurological problems, which is the cause of my current questions... Dad was diagnosed with 'non-communicating hydrocephalus' (water on the brain) in 1995 and has subsequently had successful 'shunt surgeries' to insert a drainage system which basically allows the excess cerebral spinal fluid to drain off and become absorbed into other parts of his body. In any event, the symptoms of the hydrocephalus (poor motor control, cognitive impairment, mood changes) also mirrors HD... and now, after 6 years of grappling with the hydrocephalus, he's agreed to have a complete neurological/geriatric assessment and HD was found to be positive.

I'm wondering how to best consult with professionals so that their health insurance isn't compromised; so that my father's quality of life is enhanced to the utmost; and where I can go to find support as I now know that my own family is at risk (myself included). It's very overwhelming right now; and I'd really appreciate all the support available!

Thanks and I'm sorry if this is too lengthy!
Michelle

HI Michelle, Sorry to hear about your Dad, I have not heard the term "Medium" used to discribe HD before, as it tends to get Progressively worse with time,the Physical as well as the cognitive symptoms, or your Father could have just one or the other as the Prominent Symptom.The late onset of your Fathers HD at age 71 is not a guarentee that late onset will be the Norm for all your Family or future Generations, My Fathers onset was in his early 40s. But I have had Siblings with onset From their 20s to the oldest at 68 and and varied Severity at onset,as well as wildly varying Symptoms,ie. Some with severe Chorea and very little cognitive impairment, and others with the cognitive impairment being the Prominent Symptom.The only thing you can be sure of with HD is that you can be Absolute about very Little in the way it Presents itself.We have a very large and wonderful Support group on the net called Hunt-Dis, and it has a membership of around 400 People all dealing with HD in their family and Helping others where they can,I would like to invite you to join,you would feel most welcome and know that there is a lot of information these folks will help you with as well as just Ranting at the Dragon,which is what we call HD.Instructions for Joining can be found on the Home Page Here at the HDAC site.I wish you well and please feel free to contact us. Peace to you and your Family.

Michelle,

Your story is interesting to me in that it mirrors some of my family's experiences. My grandfather had onset at 70. Two of his children had onset in their 40's, and a third (my father) had onset at 70. When my uncle first started having problems we didn't know about HD (didn't know that is what Grandpa had). He was originally diagnosed with "water on the brain" and had a shunt put in. Later we discovered it was HD and not water.

My dad's HD was relativly mild and he had no movement disorder at all. He died at 77 from an infection. I am 45 and have been experiencing some symptoms. My brother and sister (in their 60's) don't have any so far.

Of course none of this helps you. But it does make me wonder about the hydrocephalus diagnosis. Either it might be common with HD, or is misdiagnosed a lot? I have also heard that late onset HD tends to be milder than earlier onset. It was certainly the case with my dad. And my grandfather's symptoms were not nearly as severe as my uncle's. You and I have the same mixed fortune, there is a chance that if we have the gene, it could be very late onset; but inheriting it from a father means that we might experience expansion and get it earlier than our fathers did.

Good luck and hang in there!