I know you are kidding about the disablity policy but I can tell you first hand they love your money but hate to pay out. Fortunately I had one in place when I found out I had HD but read a little on the net about their tactics. I need exercise and to be active per my Doctors but I'm afraid to go out much and frankly cover my 6 in case they send out investigators (not doing anything wrong), I knoby mikee - Huntington's Disease Support Center
I am very interested in participating in clinical trials given the cost to benefit ratio in terms of health . I don't know where to start. I saw you link ;and will check it out. I did participate in a stem cell project for HD and related illinesses at Mayo recently. As Will said it is gratifying. I would be happy to do more if in my general region of the south. Also I spoke with a young ladyby mikee - Huntington's Disease Support Center
I'm not familiar with the scholarship. Can someone send me a link. Thanks, Mikeby mikee - Huntington's Disease Support Center
OK. I know some of you are holding back. I am not one to jump on a bandwagon for stuff like this but the juicing stuff just makes sence. Mikeby mikee - Huntington's Disease Support Center
Thanks all. My best for you as well. I am a person who needs to talk and my wife is not the talker although extremely caring. It helps to have this outlet. I hope she will join in someday while I can still relate, I'm trying. Mikeby mikee - Huntington's Disease Support Center
Will, I may have asked this before but do you do any juicing. Mikeby mikee - Huntington's Disease Support Center
I can understand. Its one of those things that just suddenly happened. My wife always forgets when locking the car door and I'm nearby, I nearly jump out of my skin. My started with the African Children's Choir concert (must see) and some of the notes had me jumping and jerking so badly my sister in law thought I was having a seizure. It certainly changes things. There are so many small things weby mikee - Huntington's Disease Support Center
Thanks. I saw this from an earlier post and it got me somewhat interested. I can understand the concept and its application to us. Mikeby mikee - Huntington's Disease Support Center
Thank you all so much. It has been a help already. In a way I'm glad it's still the same, I was afraid it would be higher than 36. I don't understand what to expect from all of this. I know what it has done to me and my family thus far. All in all it could be much worse at this point. Luckily I have been spared the major phschological issues and I hope they will stay at bay.I see some who have muby mikee - Huntington's Disease Support Center
I recently saw a nature path thinking it could not hurt. Lots of things came out of it but interestingly he agreed the blow to head turned my HD gene on. In his opinion I should start juicing, coconut oil, vitamin supplements, no more milk and no soy as I showed gluten sensitivity. My PH was 5.2. I had some of my blood work with me and there was a couple of vitamins such as vit. D and K that werby mikee - Huntington's Disease Support Center
Marsha Wrote: ------------------------------------------------------- > That said, celiac disease is present at a higher > rate in HD patients. That's interesting. I haven't looked at the Paleo diet but I will. Allthough I have not be "tested" for Celiac, I saw a nature patch Doctor recently and he said I showed gluten intolerance. Not sure if I buy off on all of the homeopatby mikee - Huntington's Disease Support Center
Hello all, I was retested in January and go my results. They were exactly the same. Both Alleles. Different labs. Thought you may be interested. Mikeby mikee - Huntington's Disease Support Center
Folks, I'd like to see more post like this. This is just one of the things I spent two years trying to get figured out. I have HD and about a year after the initial symptoms (many misdiagnosis) I would get this startled jerking effect from certain sounds (musical). Other loud noises can be unbearable and sometime everything shuts down until the noise passes. This is unfortunately good to hear. Thby mikee - Huntington's Disease Support Center
KVN sorry to hear about your plight. I developed HD later in life also as a result of a head injury. I'm with you brother. I can't speak for your brother's symptoms but mine get worse with stress, crowds, fatigue,etc. Feel bad, fatigued a lot. Keep an eye on him. I doubt you will convince him if he's like most folks. I have two sons and worry more for them and my wife more than myself. Best of luby mikee - Huntington's Disease Support Center
I am thankful for all the spouses and family of HD posting but it came to mind there doesn't seem to be a lot of pHD's posting. Also, I read another post and have wondered about funding. Who do we need to contact to get noticed (ex. MS) and get more funding for research. Is it time to come together? Mikeby mikee - Huntington's Disease Support Center
Dina I know exactly what you are talking about. I am learning that everyone is different. Movement may be differet but there are fine threads and gentic testing that tell them if they are on track. If your Doctor isn't receptive, maybe it's time to search for another. It took me almost two years and several specialist to find out "what is wrong". I knew I had symptoms that were not beinby mikee - Huntington's Disease Support Center
Mae I'm cag 36. Probably would not have lived to see symptoms. I would assume the environmental factors Marsha mentioned play a role in mine. I had a head injury 6 mos prior to onset. I can't imagine anything higher. Life is pretty gloomy sometime at 36. Chin Up! Mikeby mikee - Huntington's Disease Support Center
Great news for you guys. I just caught the post again and I am happy for you all!! Mikeby mikee - Huntington's Disease Support Center
RT sorry for the problems. I am relativly new here but what you described has certainly hit a note with me. I am CAG 36 and I can tell you, swaying, staggering, fatigue, can't complete sentences sometimes. It very well could be what you think. I am no longer able to work, sleep due to severe fatigue numerous times a day. Marsha has a very good background and I agree with her recommendation. Bestby mikee - Huntington's Disease Support Center
Hi all. Anyone had any experience with private LTD carriers and HD? I'm completly paranoid about this. Constantly in fear of being denied just to see if I can jump through the hoops. My carrier apparently has one of the worst reputations for denial after the two year mark. My Neurologist offered a letter to them and I was afraid to stir the pot, so I reserved that for later. I also have SSDI in pby mikee - Huntington's Disease Support Center
Hello again. In all my curiosity I was wondering about juicing as a supplement. Prior to my diagnosis I would not have even considered it although a lot of folks swear by it. Anyone have experience with this or know of any benefits for us HD folks? I did read Will's reply on supplements which is interesting. Thanks Mikeby mikee - Huntington's Disease Support Center
I'm sorry for all you've had to deal with. I asked to be retested with a cag of 36. I am sympomatic in my Neurologist opinion since so many other issues were ruled out. That was about a month ago and I haven't heard anything. According to my Neurologist during early testing there were some lab errors but as far as he knew it wasn't a problem today. Head trauma is what he thought started my symptby mikee - Huntington's Disease Support Center
This is interesting. I have HD with chronic fatigue and lots of sleep has been a way of life for almost two years. Some days I get less but I feel a bit better those days, others find me sleeping 4-5 hours at different times. I get up and move around, run an errand and back to bed. I am in early stages. I haven't seen anything till now about fatigue and sleep. It's good to know. Thanks, Mikeby mikee - Huntington's Disease Support Center
Welcome Sahmof3. I'm pretty new and have been tested. Hardly a day goes by when I don't feel something different or do something different and not wonder. Fortunately (I guess), I knew nothing of HD when tested it was just part of the process of finding out what was wrong. I prefer to know (I think). Good Luck. Will I would also like to know more about the supplements. I am cag 36 but have symby mikee - Huntington's Disease Support Center
Thanks a lot Will. It is a valant effort to participate. Best Wishes Mikeby mikee - Huntington's Disease Support Center
Hello. Are there things we should avoid with HD. I'm talking foods, drinks, medication, etc. Also, are there things we should add to our daily life that may benefit us. I saw the youtube video and it was most interesting. Thanks, Mikeby mikee - Huntington's Disease Support Center
I'm sorry for your struggles and losses. I too lost my Mother about 4 years ago at 93. Prior to surgery (only way to save her life) she told me "it's best this way". I take that as her knowing more than we thought at the time as it was something sudden. This actually gives me peace to this day. As far as your articulation, thinking and work. I struggled with the same issues knowingby mikee - Huntington's Disease Support Center
Thank you all for answering my questions. It gives me more hope. It seems to be anyones guess about onset in some ways. If I am symtomatic now, hopefully it will progress slowly. There appears to be many other issues I am not experiencing. My Neuro gave me some literature but I haven't read it to date. It is very intreresting about age of onset and the age of parent at onset. I too read sometby mikee - Huntington's Disease Support Center
Thank you Paula and Julie. I'm sorry for you loses. I hope and pray you will be spared more of this. It's encouraging to hear about your Grandmother (sounds like my Mother at her age). Yes, it may very well be in the family now and we are just finding out. Hopefully my niece will have a good report. Paula, do you mind me asking about your Mom? Mikeby mikee - Huntington's Disease Support Center
JudyF I feel for you folks. It's a roller coaster for sure not only after you know but before anyone puts it all together. I'm sorry you guys are going thuough this but it is what we have been dealt. That's interesting that his came after a head injury also. I think at times I want to know more of what people are going through and what to expect although it seems everyone is different. Thanksby mikee - Huntington's Disease Support Center