I think these ideas are brilliant. When I first learnt about HD - I got extremely overwhelmed and depressed, engulfed by the hopelessness of it all. We need to promote the concept that there is a plan or course of action - similar to those diagnosed with cancer - that there are multiple options for treatment available, and a combination designed for you will have optimal affects. Whether it is caby Shy - Huntington's Disease Support Center
Hi Kim, I understand you desperation. We would all like a cure to be announced tomorrow - wouldn't that be great newspaper headlines! I think the search for a cure is misleading; instead we need something to cling to, some hope that our future and our children's future will be better than our parents. And it is. There are treatments out there already that help. There are mood stabilisers, anti-deby Shy - Huntington's Disease Support Center
I think 51 CAG is very high - over 60 and it is counted as Juvenile HD. There has been some suggestion that trauma, including pregnancy and childbirth but also car accidents etc, can bring on HD, or accellerate progression. We all know stress is bad for PHD, I'm guessing a traumatic event is stress times 100. I would really like this concept investigated further. Also the hearing - a lot of PHby Shy - Huntington's Disease Support Center
Hi Barb, and thank you. The race is 10km (6.2 miles I think???) but the first kilometer is a very steep incline going up and over the gateway bridge and there is another huge hill toward the end of the course. I'm sure I'll enjoy going down the hill much better! I have to complete the race in less than 85 minutes which will be a huge challenge for me - not as young or as fit as I used to be! 30,0by Shy - Huntington's Disease Support Center
Hi all, Mum and I have volunteered to compete in the Bridge to Brisbane run to raise awareness of HD and fundraise for the Queensland HD Association (Australia). It is estimated that Queensland has 220 PHD's, and Australia wide approximately 1000, so we are a very minority group with limited financial support and even more limited community understanding. I am seeking your support and/or donationby Shy - Huntington's Disease Support Center
Dad was obsessing and scared over a lot of things that he normally didn't. It was upsetting Dad as much as it was the rest of us, but I certainly agree with you on how difficult it is to live with such obsessions.He was put on an anti-anxiety medication which has made a massive difference. I would talk to your doctor about it and see if there is something that will work for your PHD too.by Shy - Huntington's Disease Support Center
Thanks Ron - have circulated it everyone I know!!!by Shy - Huntington's Disease Support Center
There are 3 options available to you with having children without the HD gene - none of them very pleasant! 1st you can test and if gene negative conceive naturally, 2nd you can get pregnant and test the featus and consider abortion if HD postitive (and if so it still tells you if you have HD) or perhaps your best option (but most expensive and invasive) is IVF where they can test the embryo andby Shy - Huntington's Disease Support Center
Hi there and welcome! When someone decides not to test, we have to accept and respect their decision - they don't want to know, and I don't really blame them! But that doesn't mean the rest of the family doesn't want to know - it affects us and haunts us in so many ways. Everyone around is left guessing and symptom hunting, and worrying about how it might impact on their lives. Those auntiesby Shy - Huntington's Disease Support Center
lol Thanks Ron! Needed a good laugh this morning and I'll send it on to others that could use a laugh too. Keep them coming!by Shy - Huntington's Disease Support Center
Hi Ruth and welcome. I struggled with the 50% - because mathematically speaking if 2 of 4 siblings were negative, it should dramatically increase the risk of the remaining 2, but it doesn't work like that. Many people explain the 50-50 chance of inheriting the gene like a coin toss - you know the heads or tails game we used to play as kids? I always lost as a kid, but in this real-life game I wonby Shy - Huntington's Disease Support Center
So Marsha, if they can recruit the at-riskers for early treatment trials like you said, can they give the gene positive ones the drug and the gene negatives a placebo so it won't adversely affect them. I understand the double costs because they still need to keep up the fascade so they don't know their results, but at least the placebo can ensure they aren't adversly affected by the drug.by Shy - Huntington's Disease Support Center
I am wondering if the researchers can't use at risk persons in their research, do the genetic test without revealing the results, and put them in whichever group the results dictate: if they are positive put them in the drug group, if they are negative, put them in the placebo group. As long as they are professional and never reveal the results to the patients, then they can participate in drug tby Shy - Huntington's Disease Support Center
This is brilliant! Thankyouby Shy - Huntington's Disease Support Center
I totally understand your thirst for more information to empower you through this nightmare, but also your husband being unable to digest the information he has in front of him - it is a fine balancing act to meet both your needs. The months following the HD bombshell is so very overwhelming - it does take time for you to both get on to the same page so to speak, but life will get back to a newby Shy - Huntington's Disease Support Center
Hi Maria, Just thought I would mention the HD conference in Vancouver that you might be interested in attending - 9th-10th September. I found attending our national HD conference last year very informative and empowering - some of the scientific jargon went over my head but you sound well educated and should get a lot out of it. I really wish I could go, but Canada is on the other side of the worby Shy - Huntington's Disease Support Center
Hi there - YES, YES, AND YES! This is a very frustrating 'phase' and there is NOT a lot of professional help out there for 'soft' stages of HD, indeed many professionals still don't accept these are 'soft' symptoms. Unfortunately it has to get worse before it gets better. Either the PHD has to accept he needs help (which doesn't happen unless you force the issue like packing your bags to leaveby Shy - Huntington's Disease Support Center
Hi and welcome. I am very sorry that your girlfriend has tested positive, and I thank you for standing by her right now when she needs your support the most. She will need you to hold her and to cry with her and to walk side by side through the troubled waters ahead. To see the result in black and white is quite confronting and you may have several months coming to terms with this news and all itby Shy - Huntington's Disease Support Center
Hi and welcome. I am certainly not a specialist in HD, but the information they discussed at the conference last year was very interesting, and a little scary. Hopefully Marsha can correct me if I am wrong here or shed more light on this important issue. The conference discussion was promoting the importance of Image HD study and others like it, to develop and test early biomarkers of HD progby Shy - Huntington's Disease Support Center
Next year's conference will be held in Brisbane, Australia!!! Seriously though, We are holding our national HD conference here, but not the international one. I believe our theme is 'A Life Worth Living' Everyone is welcome.by Shy - Huntington's Disease Support Center
Hi Dolly and welcome to the forum. Your life has been thrown into a huge turmoil and it does take time for things to settle down into a new kind of 'normal', but it does - eventually. I visualised HD as this huge tsunami that wiped out my comfort zone completely, and took with it many, many loved ones. The first wave knocks you over because it is quite unexpected, but the 2nd seems even more devaby Shy - Huntington's Disease Support Center
Congratulations Matt on a great site and a terrific effort on raising money and HD awareness. Your video clips and tributes to JHD was very touching and I like the idea that you are running one marathon for each of these angels. Very inspirational and emotional. Thanks, Shyby Shy - Huntington's Disease Support Center
You obviously love your dad very much Barb and I'm sure he would be just as proud to tell people that you are his lovely daughter. Lets hope you both have many more birthdays to celebrate together. All the best, Shyby Shy - Huntington's Disease Support Center
Hi there - I am from Australia and we have different protocols here, but unless you are already considered symptomatic, we have to go through all those counselling sessions and psychiatric evaluations before they will draw the blood for testing. My results took just on 6 months but it is an agonising wait, but they assure me it is necessary to get your head ready for 'bad news'. I had good news iby Shy - Huntington's Disease Support Center
Great idea to post a list of 'do not take' medicines, not so much for right now, but future reference when a doctor suggests this drug or that drug! There was an anaesthetic that was NOT recomended too- but I don't remember which one. Perhaps Marsha can fill us in with others. I actually think it would be a good link once complete - easily accessed rather than a forum topic that you have to searcby Shy - Huntington's Disease Support Center
Well I HATE you Barb!!! Just kidding! I think you're one of the sweetest, most supportive people on here!by Shy - Huntington's Disease Support Center
Thanks Barb!by Shy - Huntington's Disease Support Center
Hi Lauren, and welcome to the forum! You are so young, but so mature and wise! You speak of your dad with so much love and admiration, and those precious memories are what will help you through this difficult time. HD brings so many issues that affect your entire family and social network. You will need to work through each of these issues, one at a time, and it will be very overwhelming at tby Shy - Huntington's Disease Support Center
It sounds way too sudden for it to be HD symptoms. I agree with Barb, check for other causes first. And be careful not to drive or swim in case you black out and harm yourself or someone else in the process. Take care, Shyby Shy - Huntington's Disease Support Center
I am so sorry for what you and your Mum are going through right now - it must be a very stressful time dealing with HD and lymphoma. I would think if you only just started to have blackouts and uncontrollable jerking and headaches etc, then it is more likely stress related. If it were HD related, I would expect it to be a slow buildup of symptoms over several years. HOWEVER, and this is whereby Shy - Huntington's Disease Support Center