My husband tested at McMaster Medical Centre and it took six weeks to get the results and another two weeks to book the appointment to actually recieve them. Please try and line up counselling with a psychologist before and after you get the results. No matter the outcome I think this is a good idea. CPby Concerned partner - Huntington's Disease Support Center
Wonderful! Do you have a link for this information. I'd like to send it to my HD. CPby Concerned partner - Huntington's Disease Support Center
Kathy, There are a few of us in a similar situations, with a spouse likely showing early signs and the individual not being aware. That certainly describes my husband. My pharmacist explained that this was a frequent feature of neurological disease. Please before you go to your GP look after insurance for your husband and any children you have. My husband went and got tested without my knoby Concerned partner - Huntington's Disease Support Center
My partner started on 20 mg of creatine and with blood tests had to reduce to 15 mg. So please be sure that you let your doctor know that you are taking creatine. All it requires is a blood test to determine the best amount for you. CPby Concerned partner - Huntington's Disease Support Center
Rowan, I have two children. One knew from age 14 that a doctor was the way to go. And now we have a doctor. The other is (was) not a great student but loved horses and that is all she loved. I suggested an agricultural school with a horse program. In second year, an agricultural economics course was the highlight. Then after that it was full steam ahead in commodity economics and then a govby Concerned partner - Huntington's Disease Support Center
My HD MIL who passed with advanced HD, opted for her remains to be donoted to scientific research. Now that was in Canada and I have no idea what the process was. CPby Concerned partner - Huntington's Disease Support Center
Rowan, Where are you located? Does your husband take supplements and how is he about taking them? CPby Concerned partner - Huntington's Disease Support Center
Rowan, For a few years my daughters and I thought he was going deaf and were after him to get his hearing assessed. Of course, because he can be obstinate, he refused claimning it was only a wax problem in his ears. Then one day I noticed that if I didn't repeat myself he would answer my question or comment back. It seems to be a kind of hit or miss thing as well. He seems a bit better onby Concerned partner - Huntington's Disease Support Center
I think my husband has developed a verbal processing lag. For a long time now, no matter how close I am to him, he said pardon, repeat that. It it has been irritating and he does it to our daughters as well. He refuses to go for a hearing test. I think it is really a lag in processing because if I don't repeat myself he will answer me appropriately. Has anybody heard of or experienced this?by Concerned partner - Huntington's Disease Support Center
I think this calls for a mass letter campaign to educate him and his staff who actually write these letters. Nothing educates a politician like thousands of letters on the same topic with the correct information and a clear request on what the writer wants from the politician. Time to get writing. CPby Concerned partner - Huntington's Disease Support Center
Be causion! Sound like symptoms of HD> Think about being a friend and how you would help a friend with a disabiliy. Remember to think about what makes sense in this case and what you are able to provide realistically for support.by Concerned partner - Huntington's Disease Support Center
Congrats for thinking about biking again. It may be worth your while to take both bikes into a bike shop and look at tire options. I put a smoother tire on my mountain bike for riding it on the road and it made a big difference. Or you could look at putting a heavier tire on the road bike so you have more traction. Some of the bigger specialty bike shops have stands for riding indoors thatby Concerned partner - Huntington's Disease Support Center
Hi Denise, I am also in Ontario and have been ordering Trehalose over the internet. It is as easy as pie. I place the order and it arrives in the mail within about four days. There is no duty charged just a bit extra for shipping. CPby Concerned partner - Huntington's Disease Support Center
Denise, Please post whatever you find out from Judy Roberson. We are in Ontario too. There are many here in Ontario and the opportunities for drug-treatment trials are so abismal. I really believe that stem cell is the best line of research for reversing this disease. CPby Concerned partner - Huntington's Disease Support Center
Has anybody seen a formula for calculating the amount of creatine someone should take based on body weight? For the second time my partner's blood levels came back as too high. I guess the normal range high is 126, and his levels this time were 175. So the family practitioner wants him to stop. Is this really too high that we should be worried? What might be the levels of true kidney damagby Concerned partner - Huntington's Disease Support Center
marg Wrote: ------------------------------------------------------- > I know this is going to sound unsympathetic > but here goes. There are a lot of us both PHD's > and Carer's who wish all we had to deal with is a > slight twitch every now and then. If this is > already bothering you I sure feel sorry for you a > few years down the road. ... > > ... So if yby Concerned partner - Huntington's Disease Support Center
Interesting that this may be a similar action as tumeric. Can someone tell me how much tumeric a pHD should be taking? CPby Concerned partner - Huntington's Disease Support Center
Here is the article. www.guardian.co.uk/science/2008/mar/14/genetics.medicalresearch Gene therapy success raises hope of Huntington's treatment James Randerson, science correspondent The Guardian, Friday March 14 2008 Article history. This article appeared in the Guardian on Friday March 14 2008 on p11 of the UK news section. It was last updated at 01:59 on March 14 2008. CRAG, a protby Concerned partner - Huntington's Disease Support Center
Will, The report from the lab said the creatine count was 213 and the doc said normal is about 80. So the course of action is to take a 7 day break from creatine and then get another blood test. When the levels are down, my partner can start again slowly building it up. I'd really like to know what an acceptable elevated blood level of creatine would be. Any ideas? CPby Concerned partner - Huntington's Disease Support Center
I may also be low blood pressure. That can make you dizzy too. CPby Concerned partner - Huntington's Disease Support Center
Leesa & MRO, Please, cut yourselves some slack. Be kind to yourself. You cannot do everything and be a perfect caregiver, wife, mother, employee, daughter, etc. Leesa, I know that you have a very stressful job because my Sister-in-law does 911, so I understand the stress and fatigue of your work. The shifts really take their toll, lack of sleep, and then you are trying to do everythingby Concerned partner - Huntington's Disease Support Center
Will, Thanks for the advice about posting. We do have a doc who is willing to try different things but at the same time he is very careful about test results. My partner was taking 20 mg creatine a day since early December. I really appreciated everybody's help on this site so much. CPby Concerned partner - Huntington's Disease Support Center
I just got a call from the doc about my partner's latest blood work. He said to stop the creatine based on his latest kidney function test. Has this happened to anybody? Were you able to start it again? I feel like this is a major set back. CPby Concerned partner - Huntington's Disease Support Center
My understanding from everything I have read is that if the HD comes from the mother the number of repeats is more stable and has a has some greater possibility that the CAG repeats will be lower than if coming from the father. The other thing I have read is that daughters inhereting from their mothers have the greatest probability of a stable transfer or even decreasing the CAG count. Alsby Concerned partner - Huntington's Disease Support Center
Canada does not have an orphan drug research program. The Canadian Organization for Rare Disorders (CORD) is call for the public to support their efforts to change this. You can show your support by going to their webpage at and completing a letter to your Member of Parliament. The page to access the automated letter is It was very easy to do and invites people to modify the letter. Iby Concerned partner - Huntington's Disease Support Center
I just did a quick internet search and found on a few kidney disease pages that a Low Protein Diet is designed to reduce nitrogen metabolites and ammonia in individuals with toxic bowel, liver disease or kidney failure. In this case dietary protein must be limited to 0.6 gram/kg (2.2 lbs) of body weight or about 40 to 50 grams per day. Anything less than that can cause muscle waisting. Thby Concerned partner - Huntington's Disease Support Center
Remig, Thank you for your summary. I am going to take a look at the article myself. I have already read scientific journal articles about the reduction/elimination of red meat as a protein source for the pHD, as too much iron in the brain contributes to increased oxidation. Based on that I have moved our diet over to poultry and fish as a protein source. Now I am wondering about movingby Concerned partner - Huntington's Disease Support Center
I think one of the best news stories is the potential to stop this disease for subsequent generations are the advances in reproductive technology. My daughters, who are at risk, will not have to choose between not having children and having children who will be at risk. They will be able to choose NOT to pass the gene on to their children. I am so happy for them that this technology exisby Concerned partner - Huntington's Disease Support Center
My partner had his first appointment with the neurologist, and is determined to be pre-symptomatic at this point in time. The possibility of taking minocycline came up in discussion, depending on "how aggressive" my partner wants to be in this phase. The next appointment is in two months and they will discuss minocycline again. Is anybody taking this now? Where can I find informaby Concerned partner - Huntington's Disease Support Center
Dusty, This is just a thought. You could contact the School of Social Work at Wilfrid Laurier University and ask if there was a social work student with some life experience who would be interested in volunteering to work and set up a group. The Laurier program is a Master's degree and many of their students are mature, life experienced people. It is just a thought. Try contacting:by Concerned partner - Huntington's Disease Support Center