I was wondering if anyone out there that is now hd+ was a good deal older than the other people in their family when they became sick with hd?

All the other people in my family were in their 20's at the age on onset, I will be 34 next week.

I have read enough to know that it would not be unheard to develop symptoms later than others but I am wondering if anyone here has any personal experience of this?

Thanks

My wife's CAG is 47. I think the psych symptoms started at 27 or 28. The actual physical symptoms manifested pretty much at 32. At 36 she was in the Nursing home.

wifes older brother, noticed the accelerater problem when he was in his early 30's. severe problems by his 40's(since he is on the other coast, lost contact)
wifes younger sister was having problems in hear late teens. Passed away at 49
wife started having problems after 50 when both older and younger sibling were in last stage.

Happy birthday in advance, Tracie. I still haven't found my birthday list, after the move.

I was 34, once. I think. I can't remember!

Tracie - I don't myself have any experience of being older than sibs who developed symptoms. My sister (4 years older) and I seem to be pretty much on the same schedule.

There was a VAST difference in the previous generation, however. My dad didn't get symptomatic until his late 60s. One aunt in her 50s. An uncle in his late 40s. Another uncle was in a wheelchair and unable to swallow or speak when he was still in his late 30s.

If asked to predict anything based on my own experience - I'd be forced to say, "Danged if I know!"

That said - you should keep in mind that of all of the PHDs I've mentioned in my family, you should keep in mind that I'm the only one whose had the DNA test.

Therefore, I haven't a clue as to the CAG repeats of these family members. And though CAG repeats are not entirely predictive - I think there are some associations between CAG repeats and age-of-onset.

I'm just personally a pretty useless resource for personal experience, in that regard.

Fortunately those are people on this site who can provide better information on that issue!

Well my dad's sister became symptomatic in her mid 50's, my dad in his 70's, and me at age 43

Are any of these cases with a maternal pass down?

And Thanks JL for the early birthday wishes

Tracie - my family was a paternal passdown - which could possibly account for the wide variations.

Fred, your wife's experience is exactly the same as all the people I know of in my family with hd. Do you know her cag? Was her pass down maternal/paternal? Does she have other phds in her family?

Norma had a CAG of 43. Became noticably symptomatic at age 52. I say noticably, as I'm not sure if she had minor symptoms that didn't show, or her lifelong bad balance was due to HD. She suffered no personality change or bad moods until she started medication, and then only for a short time. She died at age 60. Her dad also died at age 60, CAG unknown..take it easy...peter.

My mom started showing symptoms beginning in her 40s. She started to have movements and became angered more easily. She is now 49 and in a care home. So in 9 years the diseaese took over, makes me very mad. I dont know her CAG count either. I hope I dont show symptoms in my 20's or 30s, that is scary...

Hi Tracie

My mum was diagnosed at 40yrs with a CAG 42 but showed some classic HD behaviour before that.
I inherited the gene and my CAG is 43 and at 51 yrs I only have a few soft symptoms, she was in a NH at my age where I am lucky enough to still be leading as normal a life as PHD can.
I have 2 brothers who both tested negative.

Have a great birthday next week.

I hope this helps.

Dave

That does help. Thanks

TracyT,

Her disease was passed through 2 Fathers. The Grandfather had it, and died in his mid 50's (can't verify now), and her father died at 45 with it. He had been in a NH for about 5 years.

Grandfather had 3 children. 2 boys, 2 girls. Only one without HD, a girl. The Father had 4 children, all girls. Only one has no symptoms and is over 46.

My SIL (wife's oldest sister) has it, and I believe she's 47 now. She's had it for a while, at least since '92 or '93. She's been in the NH since 2000. My wife since early 2004. I dn't know about the youngest, that family was estranged from my wife's. Last I heard, she was going in the NH in '06 (she's 37 I believe)

I mentioned above, the wife's CAG is 47.

In my family my gandfather was diagnosed in his early 40's and steadly declinced for about a decade. He passed away at age 53.

My father was diagnosed at age 41 and now he is nearing 48 and has progressivly declined.

My aunt who also has the gene was diagnosed in her early 40's as well and now at the age of 52 is totally disabled and spends almost all of her time in bed or in a chair.

I am the only one in my family to have a gene test and learn what my CAG count was, now one else has had a gene test. I have a cag count of 44. Between my father and my aunt there are 8 other children besides myself who are at risk. My father had 3 kids and my aunt had 6 children.

There is one other aunt who is 42, she has not been tested but so far does not seem to be showing any symptoms. Hopefully she is negative and her three children have nothing to worry about. Only time will tell on that front because she has no intention of being tested at this point.

My Greatgrand father who is believed to have passed the gene on to my grandfather and his sister died when he was 30 in an accident and he never developed symptoms.

In my family so far it seems that 40 years old is the turning point.

I am 50, and have been symptomatic for 6 years now. Very early stages, with just a very little disease progression some years, and other years no progresion. Now my symptoms are better than they were 4 years ago...so says my neuro

my mum has a cag of 44..onset aprox 38.
Her brother and sister have a similar cag and onset was later 40s

My CAG is 47, I'm 58. My mother was diagnosed by Wilder Penfield at McGill and saw Ch. Mcnaughton. My oldest sister spend a lot of her life looking at herself compared to our mother, and the grandfather who I did not know.My middle sister Joan was diagnosed with HD by Dr. Barbeau and died at 42. My neuros tell me that I'm early stage, but I think I' ve had HD since age 39 becuase sensiblily one should look for simililarities in each family. So I just factor out the neuros now becuase their evaluation simply does not help me home by myself.
dusty

My husband was about 34 when he was diagnosed and passed away at 41. His dad was in his early sixties when he passed away and his aunt was around the same age or older. There was a big difference in age. His dad would have been diagnsed in his fifties, we were never given much information.