All,

After some gentle convincing from Will, I have decided to post onto this website to let you all know my fight.

I have been a quite follower of HDSA for the last few years, and visit the Lighthouse often. I read Will's post on HD Lighthouse, and I have been "lurking in the shadows" for lack of better terms. Lately I have been deciding that if I am not part of the solution, I am part of the problem. So, slowly I am thinking about standing up and entering the world as an at-risk HD (my close friends and family know, Fianc? knows, no-one else does)

You see, I am an At-Risk Ironman athlete. An Ironman is an endurance race that consists of a 2.4 mile swim, 112 mile bike and a 26.2 mile run to finish it off...

My father had HD when I was growing up, and died of it in 1994.

For several years, I decided to "drown" my sorrows and ignore the situation. When I turned 26, I was overweight, heavy smoker, and was headed down the wrong path....So I got my butt going on things! Having a graduate degree in Human Kinetics, I have seen all the research suggesting the benefits of exercising and diet (physically AND mentally). So, facing what I knew I had to do, I began the fight of a lifetime.

I have been a triathlete now for 6 years. I am 32. Along with an extremely healthy diet, all the supplements, triathlons are my fight against being at risk (plus, to tell you the truth, I enjoy them greatly). HD might have taken some years from me as far as not doing the right thing, but it has also afforded me the Opportunity to see life through precious eyes, eyes that have seen me finish several Ironmans, and even the San Francisco coastline from the middle of the bay (swam from Alcatraz). What a SIGHT! I can honestly say, I probably would have never have done this had I not been ?at-risk.?

Why am I reaching out to you? Will's story has always given me inspiration and I think there is so much to his story. My dad fought hard, walking every day. He did better than most, but his diet was not as good and little was known back then on what diets would work and what drugs were bad. His brother had a little better diet and did even better. (Out of 6 kids, only two of them had it). Me, I am 32 years old and "At-Risk." So, I may not have it but I can tell you that by keeping a very good diet, exercising, and eating the right supplements, I feel better than ever before in my life.

Hi J
Welcome, and congratulations on getting the upper hand on your physical condition. This is a good place to come to talk about HD, and your future in dealing with this disease. educate yourself and Talk, Communication is vital to understanding HD,and if at sometime in the future you decide to test, then there is a whole world of folks here to help with that, you have a Great start already.

best to you J.

Ron C.

Wow, hi J, and welcome. I admire Will tremendously too, he is such an inspiration. And now to hear your story, that is truly inspiring. Good for you! So nice to meet you.

Welcome, J! Glad to see you posting. You and Will are an inspiration to me. I don't think I'll ever be an athlete (I'm built for comfort, not for speed), but I am losing weight, eating healthier and getting physically fit. You are so right about feeling better!

Hi J, welcome! You are an inspiration...not sure I will get motivated beyond strolling the twins to the park...but between you and Will one day I just might. I already eat pretty healthy...but...weeeellll...baby flaps aren't as easy to get rid of!
Thank you for sharing your story!
Trish

Welcome J, you have an amazing gift and appreciation for life. keep on training and living every moment. You and Will are true inspirations. Life is good and enjoy every minute.
cheers,
>>Lp

Way to go J!! you and will are an inspiration...i'm going home right now and convince my at-risk husband to prepare for an ironman competition!!

Good luck and stay strong!

All,

Thank you for your kind words, but everyone is an inspiration to me. As I told Will, I have been following the site, but just have not "spoken" up, but I promise to do so now. I have always taken many with me in my thoughts and prayers along long training sessions. I will continue doing so. I am at-risk, and have not tested yet, although I may in the very near future. So, I may have some questions to ask.

What I do know, is if I do have HD, hopefully all the training will help. It certainly cannot hurt and I am hoping to keep a leg up as much as possible. Hopefully I can also inspire some others along the way.

J, Words of advice, please sort your insurance out first. Disability income insurance (DII), Short Term Dis (STD) and Long Term Dis ( LTD ) before you mention to your doctor or get tested. This way you can lay your plan out with a saftey net just incase.

J - You can always cancel that insurance coverage. That's what I did, even after I tested positive. I decided that with a low CAG of 40 and no symptoms well into middle age, I'd take my chances. The stuff is very expensive, especially LTC.

Will

Where is a good place to go for information about obtaining the DII and LTC? I have done a lot of research, but just looking for overall thoughts from people who have beem there, done that...like, did you tell them you were at risk (before testing) and if so, who is hd friendly?

I work for the state of NC, which has a LTC program with Prudential. There were no questions on their application that required me to reveal my HD at-risk status. I also claimed the cost of testing on my health insurance (Blue Cross/Blue Shield) and they paid it without question.

WB

Hello J,

Congrats on your accomplishments to date. I happen to be a 25 year old female who is HD+. I participated in Division 1 collegiate athletics and also was a two-time All American. The academic part of it proved to be very difficult and I believe I have had symptoms for years now but through the strength and grace of God I am still here and have a hunger for life. My struggle happens to be with my Mother who I believe is in denial living 'At-Risk.'

luvsportz,

I am so sorry to hear about the hd+ test and the symptoms. Have they been confirmed? Are you following your workout reg now?

I have been reluctant to go to just any doctor in the area because I live in a small town. I am currently looking for specialist in the area who knows what HD is and has come in contact with patients who have the disease. That and I am also very private and particular about the doctor's I go to.

I did have a CT scan to see if the disease has progressed but the neurosurgeon I spoke to (who had limited knowledge of HD) just said that nothing showed up. Hence, my reasoning for wanting to go to a specialist.

I really don't think a CT scan will show anyone anything. Otherwise they would use them as a diagnostic tool which they don't. Is there a COE close to you? It is really hard to decipher early symptoms. They tend to be explainable for various reasons even with the pos result. You would have generally have a pretty high CAG count to have had symptoms in your college days. Actually if you had symptoms as early as 18-20 years old that would be classified as JHD. Fairly unlikely.

I had a couple of "experts" look at my wife's mri. They can't really tell anything unless they have a history of them for years. The MRI's you see on the net of HD patients are apparently when the damage is so pronounced it's hard NOT to miss it.

You can entertain yourself and ask these "experts" exactly what they would be looking for and how your's stacks up.

You will find that the conversation won't last long....

J

I haven't been around in a couple of days, but I have to say your story touched me. My husband like you was always an athlete.Along with the HD he was a juvenile diabetic. Fought through all of it played football in HS and then went on to play for many years in a flag league after school. He played many other sports in addition, but that was his passion. He now is in the Mid stages of HD and that man gets up everyday and walks about 5-7 miles a day. I think fighting back is what keeps him going. Keep doing what you are doing it works!!
God Bless and welcome!
Sandy

Eric,

It was actually an MRI that I had now that I think of it. I do not know if there is a COE near me. I live about 90 miles from Chicago.

There is a COE in Chicago I beleive..St Louis... Indianapolis which is where we have gone... and Iowa also... would you like me to locate the one nearest you with phone numbers etc?