Ty sorry you didn't get an answer. I wouldn't give up if I were you. As you know people present so differently, cag counts and everything under the sun contribute. I can completely understand what she is feeling and I'm willing to bet her description is that of vertigo although it may not be textbook vertigo. Does she have nausea/vomiting or severe episodes where she can't stand. It took meby mikee - Huntington's Disease Support Center
I must have been thinking out loud (wondering how you were) and you heard me. Glad you are feeling some better. Mikeby mikee - Huntington's Disease Support Center
There is a myriad of things going on here with each of you and I can understand although I haven't experienced all of them. Simply sleeping doesn't equate to a good nights sleep. Sleep Apnea, low oxygen at night, light sleep instead of deep sleep, etc...all play into sleep and rest. Fatigue is another issue whether caused by lack of sleep or the disease. I don't thing anyone can differentiateby mikee - Huntington's Disease Support Center
Hey Ty! Just checked in since I haven't been on much. How did the appointment go? Mikeby mikee - Huntington's Disease Support Center
Really sorry to hear that Marsha. Take care of yourself. We will be thinking of you. Hope you have a speedy recovery. Mikeby mikee - Huntington's Disease Support Center
Tyler I send my apologizes for the problems. Vertigo has been a big problem for me. I'm assuming there is a Neurologist in the picture as well as an ENT. It's possible it could be related to the HD but I think testing will give you some of those answers. I can't tell you anymore than see a very good Neurologist specializing in movement disorders/Parkinson's/Huntington's if you haven't already. Tby mikee - Huntington's Disease Support Center
Steve, that's a great way to spend the day. Glad you guys had fun. We spent time with our little grandson and many saw him for the first time this week. His Dad is deployed (in a good area we think), although he missed his first Christmas he knows Adam is there with him. Merry Christmas to all of you and Happy Holidays again. We are all blessed to have this community. Mikeby mikee - Huntington's Disease Support Center
Merry Christmas and Happy Holidays to all. Yes, Steve and Marsha are great to and for our HD community. I wish all of you the best. Mikeby mikee - Huntington's Disease Support Center
Wow. Marsha never ceases to amaze me with her experience and knowledge ( you too Steve)... I wish you luck with your quest. You are in a good place. Be honest and up front to get the best assistance. Mikeby mikee - Huntington's Disease Support Center
Hey all of you guys and gals. I'm sorry I have taken so long to respond and thank you for your comments. You are a great bunch and sometimes I don't get back as quickly as I would like. I have tried the Ambien and for the most part it was a good experience. No, I didn't smoke it or drink it......lol.....It has helped and I could tell I was more rested the next day. On the other hand I took itby mikee - Huntington's Disease Support Center
I've been having a lot of trouble sleeping or staying asleep at night for a long time. It really affects me physically. Does anyone have any experience with sleep aids. Ambien was prescribed at low dose to try. I know certain medications are not good for those with HD. Thanks, Mikeby mikee - Huntington's Disease Support Center
Like Marsha said, good to hear from you Anne. I would like to encourage you to hang around and post as you see fit. Everyone has something to share that may benefit others. Mikeby mikee - Huntington's Disease Support Center
Great going Will. Keep it going...... Mikeby mikee - Huntington's Disease Support Center
Welcome Roger. I hope you will find this site informative and comforting. Mikeby mikee - Huntington's Disease Support Center
You know, couples disagree even if they have the HD gene. I see it at home and I see it with friends who do not battle HD. As a person with HD we tend to focus on HD a lot....really a lot. HD can be a scape goat for some. I think it's one of those things that goes with knowing now and not knowing the future. Look at it this way. He still loans you money. He still fusses and the cycle repeats.by mikee - Huntington's Disease Support Center
Just listened to Kelley (sp) on NPR talking about testing for HD. Don't know if it's our Kelley but I will attempt to paste a link. Well. Semi-successful. If you copy and paste it will get you there. It was good to hear HD being acknowledged. Mikeby mikee - Huntington's Disease Support Center
Liz, you and Donnie have a lot on your plate. This is going to be a transition period for both of you. Give it some time so you can acclimate to it. It sounds like talk therapy and possibly medication for depression may be in order. Tell your physician. There is nothing wrong with your feelings. This is a (nope another) life change for you. Hang in there and know you are doing the right thing forby mikee - Huntington's Disease Support Center
It's never good news Brum and it's not the end either. Keep fighting. You have a lot to process, a lot of questions and hopefully you will get the benefit we have from this forum. We stand beside you. Mikeby mikee - Huntington's Disease Support Center
So sorry for your loss. Be strong. My thoughts and prayers are with you and your family. Mikeby mikee - Huntington's Disease Support Center
Feeling tired may be normal. I am tired/fatigued all the time but I also don't have the severity. Sleep Apnea is pretty common these days and treatment does make a difference. Not long ago during a retest it was determined even on a cpap I only got light sleep and my oxygen levels got really low somewhat like Marsha said. Supplemental oxygen at night did help a little. Marsha is much moreby mikee - Huntington's Disease Support Center
It is tough leaving your job. There is always life after work as well that is impacted. Then you go on disability and have to worry whether they are going to try to get out of paying. When Dr. Claassen saw Donnie, did he have to retest and reevaluate him since he was changing Dr's? Thanks, Mikeby mikee - Huntington's Disease Support Center
Valerie welcome to the forum. I am saddened that anyone has to go through what you and your family have gone through. You have lost a big part of your life and HD is not kind. Barb said it well. It is not discriminatory. There have been others here that have dealt with similar issues so you are not alone. I must say I have not wondered why I got HD and not my siblings (as far as we know:by mikee - Huntington's Disease Support Center
Liz I'm sorry you haven't gotten the replies you need. I have read many of your post and honestly I don't have the knowledge to answer; not that I don't want to. I am very interested to hear about the Neurologist you found in Nashville. I will try a PM if you don't mind. Nashville is fairly close and I looked into possibly the same Dr. a while back. Just didn't feel like I could go through allby mikee - Huntington's Disease Support Center
So sorry for your loss Will. It's never easy losing a loved one. My family and I will have you and yours in our prayers. I will check out the blog post. Mikeby mikee - Huntington's Disease Support Center
Glad to hear from you again. Hang in there and don't be a stranger. Mikeby mikee - Huntington's Disease Support Center
That's progress! Thanks for the post. Mikeby mikee - Huntington's Disease Support Center
Everyone is affected differently is the key here. Everything I read, which varies from Medical information to personal information, is the same. Predicting symptoms based upon cag and age of onset is somewhat of a guessing game. Granted slow progression is "typically" associated with low cag and age of onset that doesn't mean it fits everyone. There has been a lot learned about this disby mikee - Huntington's Disease Support Center
Thanks again Marsha and Steve. You are the best advocates. I wish you luck in the educational process. I know there have been post in the past about law enforcement. You have to first get thier attention, then you can get their ear. Hopefully progress will be made. Thanks so much, Mikeby mikee - Huntington's Disease Support Center
Thanks for the post. It was to say the least handled poorly. Most or probably the majority of the public does not know what HD is or how it affects people. Education is the only way. I don't think anyone is going to search out HD and become familiar with it unless you hand them the information and explain and hopefully then a few will understand. Granted, Law Enforcement must protect themselveby mikee - Huntington's Disease Support Center
Thanks for the clarification Barb. Mikeby mikee - Huntington's Disease Support Center