Welcome to our community! Steve and Marsha do a great job providing us with this outlet. It's never pleasant to be in your shoes but there are a lot of good people here that can hopefully help you as you need it. I have found it invaluable. There is so much we are not told and left to discover ourselves and this forum will help a lot. I wish you and your family the best in the situation.by mikee - Huntington's Disease Support Center
I experience this myself. It is better at times than others. It's very frustrating partly because you feel it but no one can see it so it is difficult for none phd's to understand. Hang in there. Mikeby mikee - Huntington's Disease Support Center
Thanks for the post. I agree with Barb. It is a bit confusing. Thinking about all the post we see here. If Mr. Crockett thinks he has HD and it's in his family then he has reason to think it could be HD in my opinion. I'm not sure about all of the post on facebook or what they mean but I congratulate him for standing and asking. There could be any number of reasons for his condition of coursby mikee - Huntington's Disease Support Center
That's great news Liz. That has to be a relief. Mikeby mikee - Huntington's Disease Support Center
I can't contribute anything on Cymbalta but Lexapro works for me. I have taken it quite a while now. We are in agreement on the medical community and there knowledge of HD. In their defense, I have to say it is not something they devote a lot of time to in the textbooks (according to friends in the medical community). That exposure may only be a small paragraph among many. Until they have treaby mikee - Huntington's Disease Support Center
Hi Margie. I am symptomatic and I have had both. It is probably more of your progression in the disease that will make the difference. Personally I didn't have any problems but I can understand the concern about the diet before the procedure. If I had to guess there may be certain things that may give you more energy etc. Maybe you can google the subject. Good luck. Mikeby mikee - Huntington's Disease Support Center
I was speaking to a friend this weekend. He was diagnosed with throat/neck cancer a few years ago and I guess he was around 50. Took us all by surprise. When we run into each other we talk about how bad we could be doing in relation to how we are doing. I think that helps, especially from someone in similar shoes. He was left disfigured from his surgery and struggles with his nerve damage but heby mikee - Huntington's Disease Support Center
You can get a lot of suggestions on your question. I don't feel that anyone can guide your moral compass other than you. Don't misunderstand me, I am remaining neutral. If you look back you can see some of the same information I am going to share here but I will shorten it. Bringing a new life into the world is not something most don't take lightly even without the HD gene being present.by mikee - Huntington's Disease Support Center
A step in the right direction. So does this mean the protein in the spinal fluid will also be a test used in diagnosis? Mikeby mikee - Huntington's Disease Support Center
Happy Easter to you all as well...... Already been in the low 80's and the 30's. Went from winter to summer and back again in a few days. If you want to see weather change.......visit Alabama. If it's not what you want today, it may be tomorrow...........We love it..........by mikee - Huntington's Disease Support Center
Way to go Will!!! Mikeby mikee - Huntington's Disease Support Center
It's tough knowing what to do really. What you described is pretty common and not knowing exactly what to do and when as well. It can really work on you mentally knowing you are losing some of your abilities. Try to stay positive. Mikeby mikee - Huntington's Disease Support Center
Hello Schlinky1. Glad you found us. You didn't mention your cag, always a question here I guess. Ltd should cover even if SSDI does not (generally speaking). Understandably you aren't going to be flush with cash on disability. Actually I suggest working as long as your employer will allow without jeopardizing your job. Not being able top work really sucks. The mental aspect is pretty tougby mikee - Huntington's Disease Support Center
Liz that's good to hear. It's tough making yourself do things sometime even without HD. Glad he is out and about. Physically it is taxing with activity but when you finish even a small task it still gives me a feeling of accomplishment. I may ache and hurt but a lot of that is probably from NOT being active. I wish I could make myself exercise and walk (back to that drive thing). You may want toby mikee - Huntington's Disease Support Center
Hang in there Barb! I can relate. HD is bad, HD with other problems (head injury) is bad. You know you aren't alone here. Mikeby mikee - Huntington's Disease Support Center
Kristine, I am so glad you had a good visit. I was going to Dr. Ladue and found UAB. Wish now I went to Memphis. Mikeby mikee - Huntington's Disease Support Center
Hello Kristine. I was wondering if you made it UAB or are you still waiting. If you don't mind sharing, I would like to hear about it. Dr. Sung's nurse was wonderful. She wasn't able to be in my exam room at the time but was really disappointed for me it didn't go well. Mikeby mikee - Huntington's Disease Support Center
Don't forget people with HD can lose drive and their desire to initiate tasks. Forgetting is also a real issue as well. Then there is the depression factor and fatigue. There are a lot of things I would like to do but something in there holds you back. Hope this helps. Mikeby mikee - Huntington's Disease Support Center
I went through vestibular and physical therapy early on. Wish I could go back. I don't know if it will help the balance specifically but the physical therapy does give you something to shoot for. If Donnie would go it would be beneficial both physically and mentally in my opinion. Mikeby mikee - Huntington's Disease Support Center
Acupuncture is interesting. Keep us posted. Thanks for sharing. Mikeby mikee - Huntington's Disease Support Center
Green backs, Benjies, cash, $.............pharmaceutical companies ??????? Increased profits by a facility having a COE????? Hmmmm........excellent question.........by mikee - Huntington's Disease Support Center
Kristine, I hope you guys do go in with an open mind. Like I said, many have had excellent experiences. Thanks Barb. Yes, it's a hassle but necessary. I hope everyone can find a place they feel comfortable and secure in this process. Mikeby mikee - Huntington's Disease Support Center
Hey Liz, check your inbox please. Mikeby mikee - Huntington's Disease Support Center
Hi Kristine. I don't want to dampen anyone's spirits. There are a lot of people who did have a good experience at UAB. Unfortunately I was not one of them. From that experience I latter contacted Vandy and decided after talking to the Dr. it would be the same old same old stuff. Mayo on the other hand has been wonderful. B'ham is set up as a COE and Vanderbilt if not already is trying to getby mikee - Huntington's Disease Support Center
Hey folks. We are just down or up the road from each other. Not many have experience with HD except the specialist. Kristine I hope you have better luck with B'ham than I did. I would be interested to know. Mikeby mikee - Huntington's Disease Support Center
Yes, yes and yes.....Hd can be brought on by head injury. I experience much of what you describe daily. After many misdiagnosis I was tested for HD based on history and the other symptoms and I was positive. Went through a bunch of testing prior and over again a couple of times. Don't forget HD was diagnosed long before the genetic testing was available. Also with a head injury is the chance ofby mikee - Huntington's Disease Support Center
I will agree, you are in a difficult spot. Of course no one can give you the right answer the only right answer is the one you feel best suits your situation. For what its worth I will give my two cents. I have children close in age to you and your brother. When I was diagnosed, I felt it was my responsibility to let them know and let them know what I learned through counseling in the testingby mikee - Huntington's Disease Support Center
Small milestones are acceptable here. That's good news. Yes Tom. Mayo did say it was associated with HD. There are other things that I have in conjunction dealing with balance but dizziness/vertigo as I am told can be part of it. Also there was a head injury that preceded HD and is thought to have contributed to late onset. Good Luck, Mikeby mikee - Huntington's Disease Support Center
That's a bit of good news. You need some. Conversation's are difficult to follow and adding more and more voices to them makes it almost impossible. You kind of want to withdraw and you feel somewhat out of place. Even peripheral noises can interfere. Some days are better than others. Refresh my memory, does Donnie sleep well at night? Mikeby mikee - Huntington's Disease Support Center