Hello all.

I've been lurking and reading for a few weeks now. It is very comforting to find such a supportive group with a great variety of experiences and opinions....even some heated debate. Thank you already for supporting me in this new experience.

My husband was just diagnosed with HD in September. He just turned 40, has CAG 43, and is in stage 3. The diagnosis completely blindsided us because he was adopted, so we had no idea of his genetic risk. We've been married for 7 years, we have 2 children, ages 6 and 5.

He is a CPA, but has been unable to land a job for about 16 months. He has qualified for disability SSDI. I am an occupational therapist, and have worked in brain injury in the past. I sometimes kick myself for not recognizing the symptoms sooner,I thought he was just moody and mean.

We are doing everything we can to make contacts and educate ourselves as much as we can. I am fortunate to be in the Boston area, so there is a COE, many support groups and a strong HDSA affiliate.

Thank you for letting me introduce myself. I'll look forward to further discussion and debate in the future.

Patty

Hello and Patty

Patty,

Welcome. I am so sorry for your husband's recent diagnosis.

It is very fortunate that you are near a COE and you will find many knowledgeable individuals here to support you and your family on this journey.

again, welcome.

Patty welcome to the forum . I live across the water in Nova Scotia . Sorry to hear of your families hardship , with your husbands HD diagnoses . You have been lurking what debating db

Hi Patty, this is Patty. Welcome to the forum. This forum has given me more peace of mind, inspiration, and courage for the future than anything else has done. I am sorry about your husband's diagnosis, but I am glad you have many excellent resources around you.

Patty

Hi Patty & Welcome,

I am fairly new to the board also, 44 yoa hubby was just diagnosed this July and we also did not know of any family history.

I know what you mean about the "hind-site" view and wondering how you could have missed the signs. My phd hubby has moderate chorea and after it being such a gradual increase over the years it took people who didn't see him that often to make me really wonder that it wasn't just a little motor tic as previously diagnosed by doctors. Sometimes we're so close to the situation we miss all the signs. I guess sometimes I get frustrated that the Doctors should have known right away with all the symptoms he was displaying that he had HD. With every symptom he was showing and from what I've read they should have been able to diagnosis it right away. Well, now we know and we deal with it from here.

I agree, the people on this board have been very helpful!

LizzieAnn

Welcome

Stacy-NJ

Hello and thanks to all who responded:

LizzieAnn: I agree with you about the gradual onset...it is like watching your children grow, and then going to visit relatives and hearing what a growth spurt they have had! The same was for my husband's chorea, we would get together with friends or my family (who because of distance, I only see twice a year) and they would mention 'what's up with his movements?" I didn't really notice until they became more pronounced..he started drinking alcohol again after being dry for several years, and at times of stress. He could barely stand and his movements would become ballistic.

Yet still, in January, he was misdiagnosed by a neurologist as having Tourettes. After seeing Dr Sam Frank,with BMC's movement disorders clinic did we get a correct diagnosis. Dr Frank was very gratious though in saying that when physicians do not see a lot of Huntingtons patients, they do not readily recognize it. I too had worked in a brain injury LTC facility, but only had 1 HD patient in those 3 years. So I am not too hard on myself or on the neuro who misdiagnosed.

Now, he is off the sauce, balance is much better, has not fallen in the month that he has been back living with us. His chorea is mostly limited to writhing hand and foot movements and burps (every 2-3 seconds..ugh!) I'm not as concerned with chorea as I am with his memory and agitation. With 2 small children at home who cannot filter their responses to him, I feel I have taken on an additional role of referee/peacekeeper.

One day at a time..we are in this together.

Thanks for your comments.
P

Welcome, Patty.

I too, have HD & am on SSDI. I'm 60 - with a CAG repeat of 43.

You'll find great support, here..........

just wondering....patty, you said your husband is 40 with a CAG of 43 and already in stage 3.....isn't that really aggressive for a CAG of 43? just curious.

As much as I am hoping not...it may be.
We have heard from our neuropsychologist that he estimates stage 3 based on the chorea being constant and directly noticeable to the untrained eye, and also his cognitive limitations. I have not myself read anything standardized on the stages. Does anyone have a resource?

HI and welcome, nice to meet you. My ex has HD and is in nh and my husbands ex has hd and we take care of her. We have 4 kids all adults between us all at risk and 1 at risk grandchild~ interesting life we have to say the least~ Pat

Welcome to HDAC Patty

One of the good things about this board is the variety of opinions that are shared. So since you enjoy debate you will be at home here.

As somone pointed out - there are occasional snowballs hurled at one another. Just duck and run.

Steve Ireland
HDAC.org Web Admin and newbie member of the HDSA Board of Trustees chairing the HD Advocacy Committee

Hi Patty. Nice to meet you. I am 57, at-risk, tested, and waiting for the result. I stopped working in April due to cognitive problems and am currently appealing for disability with CIGNA. I was an accountant too, but had ended up in software development and support.

Sorry to hear about your husband. He's fortunate to have a supportive wife.

Pam

just wanted to say HI and Welcome!!

DCB
*Living for today*