What AMAZING NEWS...I cried and shared with my family when I received the email. I cannot say how THANKFUL I am, for all who remain nameless, behind the scenes who have fought this fight. I lose sleep over the disability issue, and when to apply and all that goes with it. I feel so blessed to be a part of this community- even in the midst of living with this disease. Blessings!by purplegal - Huntington's Disease Support Center
Thank you Margie for sharing your experience...it really helps normalize what I am beginning to go through! I too have issues with dropping and breaking things! At first I thought I was fatigued somehow and my muscles were tired, but I experience it daily where they just give out. I can be sitting down, working on the computer, whatever... I wish you well- thanks again for answering the quby purplegal - Huntington's Disease Support Center
Hi Everyone- I hate to ask another "symptom" question...I can imagine how old those get! I haven't seen a specialist in HD (at a Center of Excellence, etc) yet...so I'm full of questions. I have muscle weakness, where my muscles just give out. I can be sitting, standing, doesn't matter. For lack of a better explanation, my muscles turn to butter. Right now my arms are really boby purplegal - Huntington's Disease Support Center
That is so excited...I hope you will keep us all posted...by purplegal - Huntington's Disease Support Center
I have to say- I was a little disappointed that myself and my family did not receive a scholarship this year (although a little relief as well...not sure I was quite ready?). However, hearing all the positive comments about the conference, I am so excited for everyone and can't wait to soak up all that you learn! Keep us postedby purplegal - Huntington's Disease Support Center
Glad people are going...honestly, I wondered if it would be too much too soon for me. I wanted to go to jersey boys as well! I knew I had to throw something fun in there Can't wait to hear what people learn...I'll apply again next year (for the scholarship)!by purplegal - Huntington's Disease Support Center
Mikee- Your message really resonated with me (again)... When you described your symptoms, I couldn't believe how much I can relate! I have been trying to describe the feelign of vertigo that I get...sometimes so strongly I have to hold on to the hand or arm of someone near me, even if I'm sitting down! I sing, and when I am onstage, if I close my eyes, I nearly fall over! I have periby purplegal - Huntington's Disease Support Center
Just wondering if anyone is planning on attending the HDAC conference in Las Vegas in June? Also wondering if anyone has gone in the past, and found it helpful- Thoughts anyone? (I applied for a 1st time Conference goer scholarship and did not get it this year)...by purplegal - Huntington's Disease Support Center
I have only seen 1 other person (besides my mother) with HD (my Mom was adopted so no family history...except myself). It was a beautitful moment, and one that I still think about- even though it was 5 plus years ago. My mother and myself were recently tested (my Mom seriously declinging and unable ot live on her own)- myself only 27 and had just received results of CAG count of 45. I wby purplegal - Huntington's Disease Support Center
Hi Everyone- So sorry that it took me a few months to "get back" to you all! My post was in a moment of reaching out to the HD community- which was something pretty huge for me...when I didn't get a response, I didn't go back on the Forum. I truly want to thank you all for your understanding, I am humbled to share this common experience with people! I often feel isolated and in aby purplegal - Huntington's Disease Support Center
Hi Everyone- So sorry that it took me a few months to "get back" to you all! My post was in a moment of reaching out to the HD community- which was something pretty huge for me...when I didn't get a response, I didn't go back on the Forum. I truly want to thank you all for your understanding, I am humbled to share this common experience with people! I often feel isolated and in aby purplegal - Huntington's Disease Support Center
I can relate! I am in my early 30s, with a CAG count of 45. My mother was adopted (she passed away last year of HD at 52) and so it's very difficult for people to relate to my age, and what I am going through!by purplegal - Huntington's Disease Support Center
Hi Everyone...I was surprised to see that I haven't posted here since 2007...well, maybe not so surprised! I think that my way of dealing with HD has been to distance myself from everyone else's reality a little bit- didn't want to feel depressed by subject matter, etc. So much has happened since I last posted...my sister and I lost our mother a year ago (last Fall) to HD...she was only 52 yearsby purplegal - Huntington's Disease Support Center
JL, I completetly agree with the need for a positive outlook on the disease. When I first heard about HD and was diagnosed with the gene- I had barely heard about it or had even seen another person besides my mother with it. So while for many it seems that it doesn't get the attention it deserves (and it may not!) I have been amazed and blessed by the community of those around the world who aby purplegal - Huntington's Disease Support Center
Well, I live in Montana where there just aren't doctors who specialize in HD, or support groups etc. That has definitly been a great and ongoing challenge. We should put the question to the rest of the forum...they are great resources! Hang in there, you're not crazy!by purplegal - Huntington's Disease Support Center
M, I have a positive gene test (45) as well, am 30 and have had the same problem for the past several years. I often feel like I am "coming down with something" that never materializes, or just feel tired and achy. It's not any fun, and it gets discouraging because after awhile I realized that the doctors can become skeptical and unsure of what to do. Oddly enough- I went througby purplegal - Huntington's Disease Support Center
Amanda- so glad you're here! It's was very refreshing to read your post. I tested positive over 2 years ago when I was 27, and have a count of 45. You're absolutely right- there are moments when I feel isolated in carrying the knowledge that I am HD positive, in a world where I dont see anyone else with the disease. However, there are funny things that happen as well, and you DO have a diffby purplegal - Huntington's Disease Support Center
Nicole- my heart goes out to you. The testing process is excruitating at times, but the waiting is harder. I hope is some way, you have a peace of mind. I am 2 and a half years out from testing positive (45), and some days, I feel like it is completely surreal. I have realized that I CANNOT look too far ahead, and need to live in the moment- whatever it may be. My thoughts and prayers arby purplegal - Huntington's Disease Support Center
I have had a terrific experience with Northwestern Mutual. I was advised to get all of my "ducks in a row" before i was tested for the HD gene (by the genetic counselors). I had a simple blood test and filled out the necessary paperwork for life insurance. I didn't end up going the long-term care route, but I do remember them asking for family background. I was able to answer the qby purplegal - Huntington's Disease Support Center
Thanks for the info...it was really helpful. I had forgotton about the blood sugar issue, as well as the caffeine. I drink a latte with 2 shots in the morning and am definitly sensitive to it. I have really noticed that in the past 2 years I have become REALLY sensitive to caffeine or alcohol- I get completley dizzy with a few small sips of wine, etc. So I guess I never thought about caffienby purplegal - Huntington's Disease Support Center
Dusty, I hope you have a quick recovery! I have just finished three very expensive trips to the dentist (which I complained about frequently) and now I think I had it easy! No chocolate...how horrible.by purplegal - Huntington's Disease Support Center
Hi All- Just wondering if anyone has experienced any kind of dizziness with symptoms of HD. Oh maybe the terrible, green symptom hunting dragon may be rearing its ugly head...but I am really dizzy lately! I know that balance and coordination are issues with HD, but do you actually FEEL dizzy with them? I was walking down the hall today and had to put my hand on the wall to keep from tippiby purplegal - Huntington's Disease Support Center
I wanted to thank everyone for the hope that is shared on this site. To much of the world, Huntington's disease is a hopeless affliction- a course that is charted out by our doctor's, friends and even family members before us. I don't want to forget the Greatest Hope of All- the one whom we celebrate tonight- on Christmas Eve. The One who drew the sick and misunderstood to Himself- the One wby purplegal - Huntington's Disease Support Center
Thanks for the encouragment...I definitly look at the world a different way. I'm thankful for that. It's good to be reminded about the good things the future will hold.by purplegal - Huntington's Disease Support Center
That's a pretty significant number- thanks for all you do!by purplegal - Huntington's Disease Support Center
Today is my 3rd year "anniversary" of my positive gene test. I try to treat it as just another day and to be thankful for my health at this moment. It's strange- sometimes it feels like just yesterday...the complete shift in my family's dynamics, a change in how I looked at EVERYTHING (and that hasn't been necessarily a bad thing either.) On the other hand I look back at how farby purplegal - Huntington's Disease Support Center
Hi all- I am curious if any of you or your family members are taking any medications and/or suppliments proactively before the onset of symptoms? I am sure that this question has been asked before, but I'm somewhat new to the site still. I am currently trying to find a physician that I trust before I am symptomatic, and there isn't anyone in my area who specializes in HD. So, I am eventuby purplegal - Huntington's Disease Support Center
Sylvia- I remember feeling similarly to what you feel right now...probably hopelessness, uncertainty and even (at least for me)- devastation. It took me awhile and I am still adjusting to a positive gene test (45). It's was life-changing for me at the age of 27, and there isn't any denying that it rocks your sense of reality. I'm not sure if it's ever an "easy" burden to carry- buby purplegal - Huntington's Disease Support Center
I should have read this post before i posted my own! Sorry... Anyway, a close friend of mine said she cried the entire episode. I feel like she "got it"... as far as some of the struggles of Hd.by purplegal - Huntington's Disease Support Center
I have a count of 45, and am 30 years old. I don't think (nor do the doctor's or psychologist that I have seen) that I am symptomatic- but it really is a "hindsight" kind of illness. I could say that I have a few SMALL but sort of persistant annoyances...but Stress does wonders...so does the MIND!by purplegal - Huntington's Disease Support Center