Thats some scary stuff. I believe I'll be checking with my Neuro. I went to 79% in my study and my Pulmunologist wasn't too concerned (I was). Mikeby mikee - Huntington's Disease Support Center
Carla, I'm so glad things are progressing well. SSDI came through for me after a year which really surprised me. I've very paranoid about LTD carriers and so is my family. Be careful what you tell them but do not lie. Be conservative in your statements. Many have the reputation of making you fight for it even though everything was done in good faith. Some carriers have less than honorable reputatby mikee - Huntington's Disease Support Center
Hello Spouse. Sounds like you have a lot on your mind. Children make a big difference whether it's HD or something else. As a pHD I look at your post and wonder if there is anything he can change that will make things work out for both of you. Is there medication, therapy that may be helpful. Is change possible? Certainly the children will be traumatized to some degree whether you stay or leave.by mikee - Huntington's Disease Support Center
Interesting post Melissa. You got me thinking a bit (a little stretch). The next link relates to Melatonin in mouse models. This is an area I would bet Marsha is familiar with. I went today to have oxygen added to my cpap therapy. Hopefully it will help. From initial indications I would say sleep and HD are very much correlated. Sleep as well as HD very much affects fatigue and if getting some coby mikee - Huntington's Disease Support Center
Hi Melissa. Try this link. It looks like HD affects the OSA. I've been on CPAP more than 12 years. Just had a new study with the equipment on and it was pretty bad. After scanning the article it fit my study to a tee. About 75% is only light sleep, only 5 minutes of rem sleep, very low oxygen levels, over 250 leg movements just to name some things. Check the link, maybe there something there thatby mikee - Huntington's Disease Support Center
Great to hear you don't have HD Diana. I am positive. It's always a possibillity it is something else. I didn't see my HD Doc this time, it won't be until spring. The Neuro-surgeon was going to pass the information on. Mikeby mikee - Huntington's Disease Support Center
I'll try to post when I have my post test visit in a couple of weeks.by mikee - Huntington's Disease Support Center
Sorry to hear the news Carla. I understand what he's going through, been down that road. Tell him to keep his chin up, it will sink in after a while and you can accept it to a degree. Glad to hear about the STD and hope there is LTD. Yes, it's a finanacial hardship but what can we really do. It helped me to talk to a therapist that I trusted. I had great support at home and with friends but you jby mikee - Huntington's Disease Support Center
One of my nieces is seeing my Neurologist at Mayo. She was tested for HD due to some of her varied symptoms and tested negative. One of her problems was this constant eye blinking. Once HD was ruled out, she was given Botox injections and it stops her blinking for 3-6 months. The Neuro did say to be very careful who you let give the injections. Personally I'm side effects of medication would pby mikee - Huntington's Disease Support Center
Sounds like you are having a tough time and I'm thinking of you and your family. I'm no expert, but if you have a high school student, you should be able to get assistance from SSDI for the child. Also, at some point your husband will be eligible for Medicare. With that said, I think, medicare will provide some assistance that you are seeking. If you haven't checked into it then it may certaiby mikee - Huntington's Disease Support Center
I experience almost all of these things on a daily basis. Are they connected? I assumed they were. Reading the article, I was amazed how similar many of my issues are to those listed. There hasn't been a lot of connection made to the reading, smell, thermostat, numbness or apnea in my case. I've had the apnea for many years. Certainly there are some things that don't apply.Perhaps there is a connby mikee - Huntington's Disease Support Center
Jennie, thanks to spam, I saw your post. I'm certainly no expert and Will certainly has reason to know exercise. I believe it has helped me. For approximately 3 months or more I've been in therapy with isotonic and isometric exercise. There are benefits and the exercises are pretty simple for the most part. Balance limits a lot but not all. I use a written list to keep up. It takes some motivby mikee - Huntington's Disease Support Center
Hello all. Haven't posted a lot lately but I've been around. I've got a couple of questions if anyone cares to share. Recently, I had a new sleep study and found I had 251 leg movements in a six hour period. Also, I got only 5 minutes of rem sleep, all with a cpap. Is the leg movement normal or could it be part of HD? Do I need to inform my Neuro? Also, I have begun having involuntary jerksby mikee - Huntington's Disease Support Center
Good to meet you Steve. I did not know your history with HD. As sorry as I am you have to go through this I am equally glad you and Marsha are here to help all of us as you have. I can't say enough to thank the two of you and this community. Mikeby mikee - Huntington's Disease Support Center
Marlyssa, It's my understanding trauma can cause the symptoms to surface. Don't know if that's your case. It is thought (can't be certain) that a mild head injury triggered my HD. Mikeby mikee - Huntington's Disease Support Center
So sorry Bob for your loss. Can't imagine. Hang in there. Until reading these post I have wondered about smoking and drinking. I like my beer and thought it may be in my head that I had better walking ability after a few. Maybe it's not in my head. Quit smoking 10 years, picked up cigars about 4 years ago. I like a few of the ones I smoke during the day but mostly another nicotene habit foby mikee - Huntington's Disease Support Center
Well, I've been around for a few months now and I want to thank everyone for all the support. I am the first in my family with HD. I went through two years of poking and prodding, misdiagnosis, etc, etc. When told I should be tested for HD I said sure, what is it. My family checked it out and we all thought it was a no go.There's no way. Guess what? It was HD. With a CAG of 36 I became the firby mikee - Huntington's Disease Support Center
Hi all. I can relate to you. For the last two years I have battled the same thing. I'm in early stage but whatever stage it's bad!!! Hours each day in bed or on the couch. Just let me sleep. It's the only way to make it through the day. I tried some supplements but couldn't really tell a difference, perhaps some but nothing note worthy. About two months ago, Mayo prescribed physical therapby mikee - Huntington's Disease Support Center
Welcome Victoria. You have found a wonderful place here. I'm sorry for your reason for visiting but hang in there. This is a wonderful group and the information about HD is by far greater than any Medical Professional has offered. This is the real stuff and real people. Mikeby mikee - Huntington's Disease Support Center
Spectacular news. Don't beat yourself up. Not having HD is a blessing. Take this time to ask yourself what you can do to help the less fortunate with HD. Good Luck, Mikeby mikee - Huntington's Disease Support Center
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Indigo you are exactly right about where I am with this. Yes, the stalking back handed things are what concern me. I'm not that way and I guess I think everyone even business should be the same. It feels good to do a few things although not as well as pre HD but still it's good. Thanks for the kind support and good luck to you. Mikeby mikee - Huntington's Disease Support Center
Thanks Indigo. Sounds like we are on the same page. I am still in early stages, able to drive locally, use a cane. There's quite a bit of cognitive problems, some time worse than others and walking/balance as well as multi tasking. My Dr. at Mayo offered to send them a letter but I haven't followed through yet. Last one said my cognitive problems alone were disabling. I appreciate your input.by mikee - Huntington's Disease Support Center
Hi Laura, I haven't hit my two year mark. Stil have a couple of months. SSDI came within a year. The private side is still on my shoulders. Having heard and read so much about their tactics I am completely paranoid. Mikeby mikee - Huntington's Disease Support Center
Let's respect Marsha's desire not to link or discuss the issue. Everyone has opinions and most differ in some way. Some things are desirable to some and not to others. Although I just popped back in I want to say to Marsha, Steve and all of you, this site has given me so much support since my diagnosis. Many things the Dr's don't have time for have come straight from here. We all support eachby mikee - Huntington's Disease Support Center
Exhaustion, fatigue, muscle weakness have been a problem for a while. Numbness in my finger tips (don't know if it's related). The more fatigued, the more congnitive problems. I can suddenly feel as if every drop of life has been squeezed and I know it's bed time. lzieb. The smell comment has me curious. I lost my sence of taste and smell about 1.5 years ago. Mikeby mikee - Huntington's Disease Support Center
I'm sorry about your test results but it's great it's not greater. I've gotten so much support and information here on the forum. Researchers I've spoken to even know of this site and it's benefit. Keep in mind you may feel like you have some symptoms but from what I've been told you may have to live a long time to see those symptoms. You can help by checking into clinical trials and obseby mikee - Huntington's Disease Support Center
Try a recumbent (sp?). My balance is still a bit compromised but it is doable. Mikeby mikee - Huntington's Disease Support Center
Tell him job well done. I'm sure there are many more great things down the road. Mikeby mikee - Huntington's Disease Support Center
Great going Will. You are an inspiration. Mikeby mikee - Huntington's Disease Support Center