New to this forum!

My father passed away from Huntington’s disease when he was 43 and I was 16. Since he and my mother had been divorced for years, the last time I saw him I was three. I never saw the effects of Huntington’s first hand, just through what my mom had told me about it and the research I did on the internet. Of my two siblings, so far I am the only one to have a positive test (sister negative and brother not tested.) For some reason, as soon as I turned 18 I wanted to be tested, mostly because I thought I knew I didn’t have it and wanted to get the worries out of my; and if I tested positive I could help with research studies and take preventative measures. I tested positive with 51 CAG repeats. I was attending college when I first tested positive and “took a semester off” and have since struggled with getting back to it. I have a job as an assistant manager type roll working in a drug store, and in the past year or so have begun to notice mild symptoms. For the longest time I thought it was all in my head because I have always been somewhat of a klutz. I throw money at people, drop things multiple times, have hard time getting my hands to do small things like screw on the cap of a bottle or organize products. I also lately have been forgetting words in the middle of sentences or what I was talking about, and have felt very bipolar, one minute in a great mood and the next feeling like crying for no reason. I have not told anyone else in my family about these things, especially my mom because she worries too much already. And now when I think about going back to school, I think that I really don’t have that much time left to do the things most people do at my age. My father was also in his early twenties when he started showing symptoms. I am almost 23 now and what if I get all of the way through college or halfway though and then start having worse symptoms? That is a lot of time and money wasted when I could be doing something I enjoy. This, and so many other reasons, is why I wish I had not been tested so soon, because I didn’t know what it meant to have Huntington’s disease and the adult decisions that come along with it.

Welcome to HDLF. This isn't a perspective that we often get to hear so thanks for sharing you thoughts. I'm so sorry you tested positive.

You already know this but family matters and you have a lot on your plate that you shouldn't try to carry by yourself. you might want to reconsider letting your mom know so that she can provide support and an objective perspective as you make the important decisions you will need to make. Build a support network early. Get your insurance and long-term care taken care of early.

Get your support foundation in place, let everyone know what you want and start enjoying your life. Some very promising research is in progress that could change your plans ... but I've found it to be very true that life is what happens when we are busy making other plans!

Steve

Totally understand your regrets, but Huntington's has a mind of it's own and you would most likely still be going through the same symptoms whether or not you tested. It is a lot for an 18 year old to process and I am so sorry you are having to deal with it.
That said, you should not try to make these decisions alone! Moms worry, that is just part of the package! You need to share this with her, she may already suspect this, and she is stronger than you realize! Yes it will upset her to know that your road ahead will be hard. Same as if you had cancer or any other disease. You will need her help in this journey and to not including her at this point is not really giving her credit and not allowing you to be open and honest. That will not benefit either of you in the longrun. Please don't try to go it alone, she will kick into mom mode and she may have some really good perspectives on the things you are questioning. I wish you the best and we are doing everything possible to support the efforts of the scientists and drug companies who are working on this, so please know that they are out there seeking answers to this puzzle. Please share your heart here and seek a support group in your area.
Best to you
Vicky

Welcome Rdylan. I don't know how anyone could say it better than Steve did. As I read your post some of the same things came to mind as Steve. You do need someone such as your Mom to be your advocate. She's a parent and will worry whether you have HD or not, I do.
Keep in mind what you describe may not be HD symptoms. Try to think positively. Have you talked with a medical professional about the issues you are having. The test results alone are depressing, don't feel alone. Don't let that stop you either. Maybe there is a simple solution.

Like Steve said, don't give up. There's lot's of research and I am hoping my old self may see a treatment or cure.

Let us know when you feel the need to talk.

Mike

Hi Mike,
We are all here to support you. Yes, your symptoms may get worse before you finish school, not going to lie. But that should absolutely not stop you from doing what your heart says. If going back to school makes you feel good.....do it!
Also, don't be afraid to speak to your mom. I can tell you that your mom probably already senses what's going on but doesn't know how to talk to you about it. We're all here to talk and vent to.
Christine

Thanks everyone! I have been seeing a neurologist for the past three years. She only has one other HD patient, so this is something she isn't very experienced in. However, from what she has seen, she agrees that I may be showing some mild symptoms. I've been thinking about changing to a different doctor because she is always very busy and doesn't have a long time to talk. Is there any advice as to what kind of vitamins or Meds I should take? I have just started taking coq10, omega, and b12. I suppose I will talk to my mom about the symptoms. She already looks like she wants to cry anytime I drop something. But I know I am lucky to have someone who cares so much

Yes Rdylan, you are lucky to have someone who cares. Not everyone has a network of support. I can't tell you more than I've been told but as far as vitamins go you probably can't get enough dose (at least safely and economically) to match the studies. You may want to check into clinical trials. This may be a way for you to create a helpful bridge between yourself and the HD community.

I would most certainly suggest you find a Neuro who has the time to talk to you and secondly has knowledge of the disease or is willing to learn.
HDSA has some info about this I think. Also, if you are near a clinic such as Mayo you should find a lot of help there.

I suggest you connect with your Mom, now. Having her in your corner will help you both.

Mike



Edited 1 time(s). Last edit at 01/03/2014 08:55AM by mikee.

READ THIS, little things that have helped him may help you. He is 52 and has tested positive but has no symptoms as yet. I wish you all the best.


[curehd.blogspot.co.uk]



Edited 1 time(s). Last edit at 01/03/2014 07:28AM by kelki.

I'm sorry. I didn't include everything in my post or at least be clear. Vitamins, exercise and all the things in the link from kelki are important. One our posters here "Will" has an article or post on supplements and he remains non symptomatic years beyond what would be expected.

Kelki, that was a good article for me to read. Thanks for sharing.

Mike

kelki's post is from Gene Veritas, someone we know well. You can see my whole story at [www.hdlf.org] Start at the bottom with "Running From The Devil".

Will