My husband has taken low doses of klonopin for a couple years now and it has helped some of the HD symptoms. He does not seem to have any side effects. Each person tolerates a drug differently. He was on risperdal a short time and we had some side effects so we took him off. As was said when all the side effects are listed for a drug - all people who were involved in the trial and all tby Shar - Huntington's Disease Support Center
Barb- I am happy you are better and can do so many things and you have a bright positive attitude which I think is a tremendous tool in life for anyone. And, Eric, you have such a great way of putting things. I think 49 is young and the older I get the younger some of those so called older years get!! Sharonby Shar - Huntington's Disease Support Center
Hi, I appreciate everyone's replies a great deal. Alot of knowledge and different directions to look at which is good. We do have two air purifiers and for the last year he felt they were the answer and now he says they do not work. He has been taking Allegra daily for probably 6 months or better now. He has used an antihistamine at times prior as well. He does say he has trouble breaby Shar - Huntington's Disease Support Center
Debra and Maggie- Thank you for your words of wisdom. I have had to be untruthful or just not tell everything which I still find extremely hard and wrong to do although I know you are right. I will have to be alot more careful about saying things to him that are minor but cause him to worry which I have seen more of lately. I will check with our health department and see if there is somby Shar - Huntington's Disease Support Center
I think you have been given some very valuable advice. I would also contact an HD support group, centre of excellence for HD, etc. and I am sure they could put you in contact with a doctor or doctors who have diagnosed persons with HD. YOu may need to change doctors and one that has worked with HD prior would very advantageous. Good luck.by Shar - Huntington's Disease Support Center
jl We do have a patio with one open side to the outside and he has, on occasion, gone out there but doesn't very often. He feels he would rather open windows than end up in the hospital or sick and does this when I am at work and I usually find open windows when I come home. Our weather in the winter gets very cold so that option isn't all year but does work in the nice weather. Thank you foby Shar - Huntington's Disease Support Center
Have a Super Birthday Maggie!by Shar - Huntington's Disease Support Center
Barb- Tell your dad Happy Birthday. What a loving, awesome, inspirational father you have had in your life. You are very blessed indeed!by Shar - Huntington's Disease Support Center
Just wondered if anyone had any ideas for this situation. My husband is 60 and has had HD probably since 45 (or before) where there was a slight visible physical movement. He hasn't worked the last 9 years. He does very well as far as is able to take care of himself, etc. It takes him longer to get ready for the day but he is able to do everything so we feel very fortunate. He does needby Shar - Huntington's Disease Support Center
Looks like I didn't finish the post before my fingers did the pushing of the keys! Basically, I am thankful you are all on here and would never intentionally hurt anyone but it seems things get taken the wrong ways at times and again maybe that is because of where each one of us are at in the process. Anyway, I am hopeful a cure or at least a medication to help HD is on the horizon and whby Shar - Huntington's Disease Support Center
I think each of us handle things in our own way including HD. I posted earlier on this thread stating I do not agree that HD is the worst thing out there - yes, it is bad but not the worst. That is for us all to decide for ourselves. It doesn't mean that we are throwing rocks at those who disagree, etc. I think Kelver was just pointing out that there are other awful diseases,illnesses,by Shar - Huntington's Disease Support Center
Hi Lauren- What a beautiful man your father was - we could all learn so much through how he lived his life - life is a gift and he treated it as such- we all have burdens whether it be HD or something else and he lived as God would want us to and as we all should. He taught all of you so much and what he taught you were the truly important things in life. I even learned from him through yoby Shar - Huntington's Disease Support Center
Let me rephrase one statement so people won't wonder - HD is not all gloom and doom as it is sometimes painted either - most people who are at risk for HD or have HD have alot of good quality life, many of them alot of great years. Having HD in the family makes people realize what is important in life and what is not - a lesson many never learn. IN this way a family can enjoy things in life tby Shar - Huntington's Disease Support Center
I do feel this is a great board to voice opinions and it is something we all need and appreciate. I have found alot of help here as well. I am not saying opinions, and that is what they are, that are different from mine are wrong - I am only saying no one opinion is wrong and no one opinion is totally right. I do not at all have a happy go lucky attitude on HD. It is very serious. Sometimeby Shar - Huntington's Disease Support Center
Without writing a "novel" this is a very personal issue and choice for everyone and many discussions have been on this forum many times with people very much on one side or the other. To each their own - life is a gamble, yes, you can make some choices but that doesn't guarantee everything. Life is also the greatest gift there is. Everyone looks at life from a different perspecby Shar - Huntington's Disease Support Center
Jackie- You have been given some excellent advice on here. One thing I wanted to add is that it is unfair of your father to let you handle all care for your mother and only provide the money but yet let you know he doesn't want your mother in a NH, etc. If he doesn't want to help, he shouldn't expect you to have to carry the burden alone either - it is actually up to him to help your mother.by Shar - Huntington's Disease Support Center
Marsha- I hope you are doing better - we all want you to take care of yourself - I only wished we could all help you as you have helped us. Take care Sharonby Shar - Huntington's Disease Support Center
I asked this question to a facility in Colorado and asked if I could use an anonoymous name and pay with cash and was told yes.by Shar - Huntington's Disease Support Center
I know of no one getting HD disability from VA but that doesn't mean anything since I know very few with HD who are vets. However, I was told sometime ago that if a person applied for a post traumatic stress syndrome pension and that person had HD now that could possibly affect the pension as far as the dr/phy relating the problems of the Vet to stress caused during deployment or HD. I am taby Shar - Huntington's Disease Support Center
I have a BIL in Salem who was diagnosed a few months ago with HD. We knew in talking with him the past years that he has had it but couldn't get him to go to a dr to be diagnosed. We live in another state and had him flown here a few months ago and after a tremendous amount of encouragement he did go to a dr and was diagnosed. He has been without a job for at least 6 years and lives on almby Shar - Huntington's Disease Support Center
Thank you Beth - we will try Bodybuildiners. I have to agree that Avicena is less than good on their service and availability.by Shar - Huntington's Disease Support Center
I think Eric gave very good advice. My children are 30 and 33 and it is their choice to test. One has thought about it. The other does not want to. I am not sure what I want them to do - I probably prefer they not. There are so many advances being made in the medical field with Huntingtons and hopefully we are getting close to a cure. Meanwhile you are going through alot right now aby Shar - Huntington's Disease Support Center
Sally- Our thoughts and prayers are with you. Sharonby Shar - Huntington's Disease Support Center
We have ordered the avicena neotine creatine for the past couple years. It is intermittently out of stock. The last few weeks it has been out of stock and in emailing the company they told us to keep checking for the next few weeks. Today I went to their website www.neotine.com and it wasn't even the same website. I called their 415 area code number in California to find out that they haveby Shar - Huntington's Disease Support Center
Our daughter had thought about being tested but wanted it done anonomously for obvious reasons. I asked at one of the testing centers if this could be done by giving a different name and paying in cash. She said yes and would have no problem with it. I don't know if they are all like that but would hope so.by Shar - Huntington's Disease Support Center
We were 20 when we married. I remember seeing his Grandma one time and she had to be in her 60's. I can remember her in a wheel chair and not able to understand her very well. I now know it was HD. My husband didn't find out about HD until we had been married a few years. His family was never diagnosed and until a few years into our marriage no one in her family knew of HD. I still waby Shar - Huntington's Disease Support Center
I think there are still many people on the forum who check it often or occasionally but do not post as often. I think sometimes a person feels they need a little break and thus do not check or post at times. However, that all being said, I as everyone, feel extremely fortunate to have this forum to go to. There is nothing like it and it is truly a blessing. Just because a person doesn'tby Shar - Huntington's Disease Support Center
As some have said, you may need a medication change. My husband tried risperdal but it made him a zombie and had a few side effects he didn't care for. He is on zoloft. He has also been taking zyprexa rather than the risperdal which has helped him immensely. The drs also added clonazepam in small doses which helped behaviors and movement somewhat. I know there is also the tetrabenazineby Shar - Huntington's Disease Support Center
I wish all of you a wonderful New Year! I know things are far from perfect in a HD world, however, there are still blessings we all have and are fortunate to have. There are medications available that were not available in years before - there is research being done on many avenues that could potentially result in a cure. I pray for all of you who are going through hard situations rightby Shar - Huntington's Disease Support Center
Jillian- My husband has had HD for about 14 years now. He is not as interested in all things as he used to be. However, we still do alot together. It basically takes me to get him going. I try to plan quite a bit 2-3 times a month on my days off such as visiting our children 150 miles away or going to the lake which is a bit shorter distance. Once he gets there he enjoys himself and particiby Shar - Huntington's Disease Support Center