Hello all- I am so excited that I found this forum! My Dad is finally being tested for HD. He had his blood drawn last week so we are anxiously awaiting results.

My Dad's family history is a little crazy because he did not have much contact with his Dad after he left at 18. My Dad's father was a very abusive, unpleasant man whom I nor my siblings never met. He was diagnosed with dementia and died in a nursing home about 15-20 years ago. My Dad is one of 4 children. My Dad's sister started having weird symptoms and after explaining how their father acted, her Doctor decided to test her for HD which came up positive with a CAG of 46. My aunt had many other problems including morbid obesity and diabetes so she died about 10 years after being diagnosed with HD. My Dad's brother was the next to be tested after he started constantly getting into little fender benders, getting into trouble at work for poor hygeine and starting to have some of the movements associated with HD. He tested positive. (unsure of his CAG) My Dad's youngest sister has not been tested.

I am really glad that my Dad is finally being tested because I think he has had symptoms for a long time but both of my parents were in denial until very recently when my Dad started having some issues at his job. He keeps getting into little fender benders and having mood issues at work and has now twice been accused of being drunk on the job. (I have never seen him drink) He also has lost alot of weight and for sure have the movements of someone with HD.

I have alot of mixed feelings. I want him to get the diagnosis so that my parents can start the disability process because my Dad is on the brink of losing his job and they cannot afford that. But I also am terrified to become at risk. I have 4 sons ages 8, 7, 5 and 3 and feel very guilty for having put them at risk. (I did not know that this was in my family until after my 1st was born already though- then I just did not really understand the disease and kept having more kids.) I really wish I would have looked into it more before having more children. I am still on the fence about being tested. I think I will, but maybe not for a while yet. I just got over a huge life changing event very recently in my life. My husband was diagnosed with multiple sclerosis in 2009 and since then has had annual MRI's. On his most recent MRI in December they discovered a brain tumor and scheduled surgery to remove it a couple weeks after. He had his surgery in February and was diagnosed with a stage 2 oligodendroglioma(brain cancer). He just finished chemo and radiation on 7/10 and then all of a sudden all this with my Dad came up. My stress and anxiety is through the roof. I am seeing a counselor already (for the anxiety from my husband).

I discovered this forum and it really has helped to know that there are so many other people in the same position as me. This is so scary and I find that I have become obsessed with researching everything I can about this disease. Sorry to ramble on but I felt the whole situation was needed to be explained so people can understand me better. Im looking forward to hearing from people!

Welcome to our community! Steve and Marsha do a great job providing us with this outlet.

It's never pleasant to be in your shoes but there are a lot of good people here that can hopefully help you as you need it. I have found it invaluable. There is so much we are not told and left to discover ourselves and this forum will help a lot.

I wish you and your family the best in the situation. Chime in or ask questions. Sometime it may take a few days but someone will surely answer.

Mike

Thanks Mikee! I have already learned so much just browsing in here.

Welcome farrisml. You will find this site so helpful in gaining knowledge from other HD patients and their caregivers or just to vent. lol.
I have had a post on here for a couple of years. I am a caregiver of my husband who is 3rd generation HD+.
I wish you all the best.

Liz

Thank you Liz! I am loving this forum already.


-Mindy

Mindy, you do have a lot of challanges in your life right now. I pray that your Husband does well with treatment. From just the few words you have written, you do seem to have a good grasp of the consequencies if your father tested positive. I get the feeling You already know!

I am a caregiver so I do not know how I feel about testing. as I write, I realize that in the 30 years of dealing with the wife's family, I never thought about it If I were in the situation as my Wife.

Thank you for the well wishes for my husband. He has his MRI today and we get results tomorrow so cross your fingers that it looks good!

Yeah I have been doing ALOT of research the last few months about HD. I never seen it first hand, because we are not very close with my Dad's side of the family. Right now, besides my Dad, the only living person I know with it is my uncle who lives in another state so we never see him. I feel like from all my research and of course this forum, I have become very knowledgeable about it. Of course, seeing it first hand will be a whole other story. At first I really felt for the people with the disease but now from this forum and the FB page Im a part of, I feel for the care givers alot as well. It must be so hard to watch someone you love go through this horrible disease..... So when I get tested, I know either result will be devastating knowing that the chances of at least 1 of my 4 siblings being positive is a pretty strong reality. Having HD will suck and so will not having it but watching my Dad and possibly some or all of my siblings having it. There's just no good when this disease is in your family....

Welcome. You are not alone and among friends here.

Phew! You have had more than your share of challenges in your life. You're handling them all with courage and skill. It's about time you had some good news. Welcome!

Will

Welcome to the forum! I am sorry you have a reason to be here but I am glad you found us.

You have a lot on your plate. I agree with you that it is a good thing for your dad to test before he loses his job. My first husband was able to get tested and bring in a letter from his neurologist when he started being unable to keep up with his job and it made life a lot easier. He kept his benefits and went on disability retirement.

If your father does indeed test possible, however, it will bring HD a little closer to the center of your life. In the HD community, we have to learn to take one day at a time and also to learn to live with uncertainty. It is hard to do but it is do-able. You may not have the gene yourself and then your children will be in the clear. If you do have the gene it is entirely possible that a gene silencing treatment will be available before you start showing symptoms. Try to concentrate on your husband and father and leave future issues for the future. Don't let them affect the happiness of the present.

Thanks everyone! My husbands MRI went great! The radiation oncologist says he is very optimistic that treatment was successful. Now we can focus on keeping my husband cancer free and learning more about HD if they officially diagnose my Dad on Thursday. This journey is only just beginning.....