Hi everyone,

I'm new to this forum, so I hope I'm doing this correctly. I decided to join after going through all the supportive and friendly posts from everyone here. I felt like I just needed to be in a community like this at this point in my life.

I tested positive for HD just yesterday. My CAG count is 46, which seems to be quite average according to my doctor. I only turned 22 this year though, so according to my doctor's estimates, I will likely not start to see symptoms for another 15 to 20 years. My father passed away with HD last year, and I decided that I was ready to get a genetic testing for myself because I just want to be prepared for the future.

Honestly, despite the fact that it was a 50/50 chance, I had so much hope that I would not inherit this disease. My mother and I were completely devastated yesterday when we found out. I feel so incredibly scared of my future now. For most of my life, I witnessed the suffering my dad went through, and I can hardly believe that this is to be my future as well. I feel incredibly alone too because my dad was the only person I knew with HD, and now I feel like I have nobody to relate to.

Since finding out my results yesterday, I keep staring at my hands and feet. I feel so jittery, and part of me is paranoid that these are my early symptoms. The rational side of me is telling me that I'm only trembling because of the stress and anxiety that I feel, but somehow I can't convince myself of this.

I just want to scream and cry. I don't know what to do.

Milestone,

Welcome. You'll be among friends here. Give yourself time to let this sink in and then decide on a supplement and exercise program that can delay symptoms. Many of us with the gene are still living full lives. I'm 66 with no symptoms and Bobnetex is 75 with only very minor problems.
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It's highly unlikely that you're experiencing any symptoms at your age. There are some folks on this board who were absolutely convinced they had symptoms and tested negative. We all tend to "symptom hunt" occasionally, but there's no reason you should.

The day I tested positive, my wife said, "You're the same person you were yesterday and you're going to be the same person for many years to come". So are you.

Will

Hugs to you! Nothing anyone says can really take away the feelings you have right now. Just keep telling yourself that there are things going on right now in research and medicine that can help you. I am terrified for my son ( he is 3) so when I get to my lowest, I come to this site and read about all the new and promising medicines. There is one that is going to human trials within a year or so. I fully believe that clinical trials have kept my mom alive with her cancer for 7 years. I fully believe that if my son is gene positive there will be treatments. He may have to take meds at some point and he may have to take them for the rest of his life but it will be a long life, not cut short by HD. The same will be true for you. You seem to be very mature so you can research and learn the things to do like exercise and eating right. You can also enjoy life to the fullest! If you get the chance, do it. That goes for anything. Try new foods, go places you might never have gone, jump off a cliff and play on a playground. Have as many experiences as you can which I think is good advice for everyone, pHD or not.

Thank you both for your encouragement. I do feel a bit better now. I think I just needed to let myself naturally go through my devastation before I start to accept my reality.

Will, what supplements and exercise programs do you recommend? I want to try to delay my symptoms for as long as possible too.

FevreDream, thanks for reminding me about all the research that's going on for HD. I want to have your kind of faith and optimism in myself too.

Hi Milestone, I would recommend starting yoga, The benefits of core strengthening, balance building, as well as meditation, will serve you well as you get older. You may have 20 years before noticeable symptoms and you have much time to make your life what you want. There will probably be a treatment by then, so many advances are being made now. Breathe...

M,

Read my story at [www.ruledomain.com] My supplement regimen has changed since that was written. Here's my current one:

Will

Will Brown’s Daily Supplement Regimen – as of February 2012

Huntington’s Disease Specific

• Creatine 10g –morning (micronized from Vitaminshoppe.com)
• Wild Blueberry Concentrate - equivalent of a cup of berries – morning (Brownwoodacres.com)
• Pomegranate Concentrate – equivalent of one fruit – morning (Brownwoodacres.com)
• Fish Oil capsules - 3 a day with meals - 1,800mg EPA total (Twinlab MegaTwin from Vitaminshoppe.com)
• Vit E - 400 IU – morning (Drugstore – all natural type)
• Choline - 350mg - morning (Vitaminshoppe.com)
• Trehalose – 15g morning (Brooklynpremium.com)

General Purpose

• Multivitamin – morning (Drugstore)
• Vit C - 1,000mg – morning (Drugstore)
• Glucosamine sulfate - 1,000mg – morning (Drugstore)
• Calcium 650mg – morning (2 extra strength TUMS Smoothies) (Drugstore)
• Magnesium 250mg – morning (Drugstore)
• 81mg aspirin – morning (Drugstore)

Medications

• Testosterone Replacement Therapy – 7.5mg AndroGel daily – Not HD related. Started 2009.

Welcome to the forum, Milestone. Lots of good folks here and the best information is all right here. You've found your community of support, encouragement and hope.

Take Care,

Carla

traveler: Thanks for the tip! I used to do yoga, and it was on my mind to start doing it again even before I got my test results.

Will: Wow, that's an incredible regimen. It's very helpful too. I went out to the grocery store and drugstore today and I found about half of the things on that list. I'm going to keep looking for the rest this weekend. Thank you for this!

Carla: Thank you for the warm welcome. I'm glad to be here.

Milestone.. I am new here (joined today) and just wanted to say stay positive. Reaching out for help is always a good first step with anything.

Welcome. It's so difficult to be in such flux. Anticipatory anxiety is a killer. However, you will find awesome and accurate advice/feedback on this board. Will is a rock star! Also, (and I am not all trying to undermine what you are going through)- this is an exciting time for HD research. The researchers (sp?) have made great strides in treatment protocols. There is lots of hope at this point looking toward the future of HD treatment. Good luck

Welcome, Milestone!! Definitely try to stay positive and keep hope that research has made tremendous strides in recent years!! The future is bright!! I know that's easier said than done at times, but I wish you all the best!

Ellen,

Thanks for the compliment, but I'm no rock star. Well, wait a minute. I'm aging, graying, scrawny and kind of homely.

I'm MICK JAGGER!

Will

Will, (Mick)


You're so freakin' funny! I love your spirit!

Carla

Will, you are ten times better looking than Mick Jagger!

Milestone, welcome to HDLF. It takes about a year to fully come to terms with a test result. It's okay to feel scared and to grieve the loss of the less complicated life you planned to have. But when you are ready, come out fighting! Keep as healthy as you can to benefit from future treatments that are on the horizon. It sometimes helps to become part of clinical trials or observational studies to prepare for future trials. Some people get in involved in advocacy or fund raising. Or you may prefer to just put HD out of your mind, if you can, until treatments are available. Just remember that although this test tells you you have the gene, it cannot predict the future for you because treatments could change everything.

Hello. I'm so sorry for your reasons for being here, but so glad you've found this place.

I'm also gene-positive, and the time right after my result was absolutely the worst time of my life. But I promise it gradually gets better with time.

There's every reason to believe that something soon will drastically change what it means to have HD. There's nothing to say that you will have as hard of a time as previous generations have had. There is definitely some hope even for restorative treatment soon. But those of us with more time on our side have an even better shot at beating this thing.

There is also every reason to live life to the fullest, (regardless of plans for "beating this thing". If you have the health & ability to enjoy life now, by all means make the most of it. Try not to let worry about the future interfere with that.

Allow yourself time to be upset, and then make an effort to get over it as best as you can.

Welcome this site is the best thing that I had found to let everything out sometimes is so hard because people does not know what you have to deal with everyday, we learned that my mother in law had HD in 2000, after she pass away already with two teenager and a little guy it was the worse news that we ever encounter my kids had decided not to get test yet, because they have the fier that they will be positive and will be depress I always tell them that live your life to the fulless and do what ever you want to do with your life, we had the news about my husband HD two years ago, it has not been easy , time change and there so many treatments that you will be ok, try to take care of yourself excersise eat healthy, and you will be ok trust me, good luck to you and you will be on my prayers .