I have travelled down that road with adult children. Considering all it was the best choice, although it is hard and continues to be hard. I have received a lot of support from website Wellspouse.com. They really understand the issues. At first my children were really angry with me but over the last while they understand as they see more of what was happenning. My daughters and I committed to helby Concerned partner - Huntington's Disease Support Center
Shapphire, You may need to consider seeing a labour lawyer if your employer is refusing to have you come back to work and the doctor says you can. They may be trying to solve the problem by getting you off the payroll. This is just the kind of work a labour lawyer takes on. The other option, if you are unionized, is seek out the help of your union. They will have lawyers on stafff. I had to doby Concerned partner - Huntington's Disease Support Center
Hi, Sorry to hear about your situation. I am also in Ontario and understand the difficulties right now in getting established in the teaching profession. I would not discuss HD with your doctor at this time and would continue to pursue treatment for the concussion. The issue is that once HD is in your medical file, even your parent's HD status, when you apply for insurance your doctor is legallyby Concerned partner - Huntington's Disease Support Center
Edwina, I hope your breast biopsy goes well tomorrow. Please focus on yourself tomorrow and doing what you need to try and make yourself feel as well as possible. I hope you have a friend or one of your children going with you for the biopsy.by Concerned partner - Huntington's Disease Support Center
It sounds very much like my ex's early behaviour with HD. Temper, threaten me, not speak to me, imagining things I was doing, then all of a sudden he would turn around and be nice like nothing happened. This went on for a long time always directed at me. Now more recently he has started the same behaviour with my adult daughter. She said, Mum now I know what you were talking about, and describedby Concerned partner - Huntington's Disease Support Center
JudyF, I am glad that it all unfolded this way for you, and I am very happy that your husband was able to understand and rise to the occassion. I hope that you have a good trip to Florida and all goes well there. Best of luck with the situation in Florida and your husband. Between your husband, children, and aging parents you have your hands full. My thoughts and prayers are with you. Hugs.by Concerned partner - Huntington's Disease Support Center
Marsha & Steve, This site has given me so much over the last number of years in terms of education, friends, support and hope for my ex-husband and the future of my two daughters who are both at-risk. This community has given me so much that I would miss its presence in my life so much. I don't post often but I read everyday and thank all who are regular posters. Marsha I have also appby Concerned partner - Huntington's Disease Support Center
I can only talk about my ex brother-in-law. He was clinically diagnosed at 35 with a CAG of 46. He died at 50, about 15 years later. My ex-husband was diagnosed with a CAG of 41 four years ago at age 52 and he is still living in his own apartment, leading a fairly active life but not able to work for the last three years. My guess is that the higher the CAG the faster the disease progresses. I amby Concerned partner - Huntington's Disease Support Center
Hi JudyF, Mind if I ask how old your kids are? And is it you or your kids Dad who has the HD? My children are in their late twenties and their Dad has the HD. I worry about my children and their health. Neither want to test and so I respect and understand this. I was just hoping to talk to someone with adult children at risk. Private message me if you like. CPby Concerned partner - Huntington's Disease Support Center
Hi Dusty, Thank you so much for posting this article. It captured so many of the issues families, children and spouses and facing. It was a really good read. CPby Concerned partner - Huntington's Disease Support Center
My husband applied for disability insurance before being tested but was denied because it was in the information that the family doctor released to the insurance company that his mother had HD. he managed to get an exception and still get insurance but if it was for any neurological disease the policy would not pay. For example, if he had been diagosed with Parkinsons they would not have paid. Beby Concerned partner - Huntington's Disease Support Center
Congratulations Dusty for your success! What you did with your lawyer will help many people get the nutrition that they need. Thank you for your determination.by Concerned partner - Huntington's Disease Support Center
Consider being in touch with a labour lawyer for advice. There maybe something in this about wrongful dismissal. He does have disability rights that should give him some protection. If he has disabiltiy insurance through the employer he should be eligibile for that.by Concerned partner - Huntington's Disease Support Center
So many pHD loose weight with the disease progressing. When does that happen? My pHD is early in the disease but looks like he has lost a lot or weight in the last year. CPby Concerned partner - Huntington's Disease Support Center
I found this recently published article very interesting.The ability to hold down a job, drive a car, and manage finances are among the first functional skills to go even before official clinical onset. Has anybody seen the longer version of this research? Earliest functional declines in Huntington disease. Abstract We examined the gold standard for Huntington disease (HD) functional aby Concerned partner - Huntington's Disease Support Center
Hope2, I am wishing you all the best as you make this decision and carry it out. Please don't expected superhuman things from yourself. Once you have made the decision to separate things will gradually get better but it won't necessarily seem like it at the time. Think of your children and your own well-being. I have walked the road that you are on and so if you want to PM me I would be hapby Concerned partner - Huntington's Disease Support Center
Thank you for posting the link. I just watched most of the videos and found them really well done. The one I found of particular interest was the one of Dr. Paulson. Her comments certainly captured my experience with my spouse. Personality changes are noticeable long before the physical symptoms start. I wish I had known this because it would have helped a lot with understanding what was gby Concerned partner - Huntington's Disease Support Center
Hi there, Sorry for the delay in responding but I remembered something I had read quite some time ago and I don't remember the source. I think I remember reading that fish oil DHA crosses the blood brain barrier but the flax seed DHA does not. What the effects on the brain are I don't know. But I think this is why most people choose fish oil. Concerned Partnerby Concerned partner - Huntington's Disease Support Center
Luz, You are right on the mark when you say that post-appointment follow-up should be offered and available immediately after the results are given. People should go from recieving the news then move right away into a psychologist's office. Recieving news of a positive result is such a shock. As spouse I was particularly devistated with the news because all along I had been thinking the resby Concerned partner - Huntington's Disease Support Center
My partner has been taking creatine and Fish Oil for two years now and I think I have seem an improvement in physical movements. However, my partner has seen a definite decline in cognitive abilities, particular memory. Is the creatine suppose to help all symptoms of HD or just somethings. Does anybody know what the resesarch has to say? What has been the experience of others with creatine andby Concerned partner - Huntington's Disease Support Center
Dusty, Thanks for the information . Who were you talking to in London? Can you provide the name and phone number? My loved one is interested in participating in this study. CPby Concerned partner - Huntington's Disease Support Center
I know that a person has a 50-50 chance of getting the gene, but it sure seems to me that more than 50% of off-spring end up gettin it. I think there must be something else at play. My MIL had three children and all three got the gene. It makes me worry about my own children. CPby Concerned partner - Huntington's Disease Support Center
Carla, My heart goes out to you with this news. I am glad though that your son has had a break from the stresses at work and goes back with new knowledge that he didn't have before. My husband was one of four sons, and all three are HD positive. I understand the 50% chance of being HD positive but it seems to me that more offspring have the disease than don't have it. The good news is thatby Concerned partner - Huntington's Disease Support Center
I would be interested in knowing what pHD and their caregivers noticed as the first symptoms, even those before the neurologist said they had found Clinical HD. My partner has recently been diagnosed but a number of years ago I noticed irritability and anger management, very slow auditory processing, dropping things, sleeping lightly, etc. It seems that it wasn't until recently with more pronby Concerned partner - Huntington's Disease Support Center
Johnathon, I have read about acetyl-carnitine and lipoic acid before. I have some journal articles on these two things. What doses do you think would be good. Have you seen anything. cpby Concerned partner - Huntington's Disease Support Center
Thank you remig, I read most of your work and would like to try my pHD on such a diet but he is absolutely convinced he needs a high protein diet because he runs about 5 km a day. I can see the benefits of alternating a low and regular protien diet throughout the week. CPby Concerned partner - Huntington's Disease Support Center
I found coconut oil in my local health food store and not all that expensive. I found this article very interesting. Told a friend about it and she says an elderly friend swears by it. I would like an educated opinion on this before I add it to my partner's list of supplements. CPby Concerned partner - Huntington's Disease Support Center
Simmer, I totally understand your thoughts -- although from the opposite perspective. At the time of our marriage 25 years ago, I knew nothing of the HD background -- it was the family secret in my partner's family. So I didn't know about the at-risk status until the mother was finally diagnosed in the mid-1990s. A few years later a sibling was diagnosed. I never really wanted to know aby Concerned partner - Huntington's Disease Support Center
Rowan, What is the name of the company you are insured under? I am desparate to get some insurance for my daughter. CPby Concerned partner - Huntington's Disease Support Center
I would love to know which company has this provision for children. My 22 year old daughter, who is at risk, is without insurance and since her father has been identified as gene + pre-symptomatic. I am worried about getting insurance for her. Of course the Huntington question is up front on the forms. How do you answer the question, does your parent have Huntington's? My husband has notby Concerned partner - Huntington's Disease Support Center