Yes I did and thanks for the info. I will ask my Doctor about it next time. I'm glad you were able to get some relief by using it and make some more quilts. Homemade quilts are the best. Also glad to hear the concussion symptoms are improving. I was wondering if as a side effect that it can sometime make HD worse then does going off of it then return you to the state you were in prior to tby mikee - Huntington's Disease Support Center
Amber, I think you have a good understanding of what's going on, at least as much as you can. I don't know what your husband's physical or mental condition is but we can't completely give up. The disconnect I talk about is really involved in almost everything we do. Our fear of doing something wrong or just "messing up" is stressful in itself. There was a time my brain worked '' ALLby mikee - Huntington's Disease Support Center
Pull that lever Steve......by mikee - Huntington's Disease Support Center
First, as a person with HD, I would like to say thanks so much for not running out on them. That says something about you as a person and although I don't know either of you I appreciate you. All of us don't experience the same symptoms and although I experience some anger issues I don't think I have gotten to that point and I am thankful. Just want to say thank you....... Mikeby mikee - Huntington's Disease Support Center
Thank you for the comment Margie. That helps validate my feelings which helps me in my understanding. We don't get this in a Doctor's office. In fact that may be a good article topic. I think this is a real problem for a lot of us. Drive can be described a lot of ways but when it is there but it isn't, how do you describe that to someone who has not experienced it. I don't think you can. It ceby mikee - Huntington's Disease Support Center
That's a tough situation to be in. Reaching out to agencies as suggested sounds like your best place to start. In my area there is a non-profit group that provides adult day care for those with Parkinson's, Alzheimer's, HD and a few other neuro diseases. Hope you find some help and good luck with the surgery. Mikeby mikee - Huntington's Disease Support Center
Will, that goes to show just how effective your exercise/vitamin regimen really is.......you may be on to something. Mikeby mikee - Huntington's Disease Support Center
That's great news Steve. You and Marsha have done such a phenomenal job for us here at HDLF. There really is no way to repay that sort of kindness. I don't know if there is anything any of us can do to help but I am willing to try if you need help with anything. Mikeby mikee - Huntington's Disease Support Center
Welcome Mary. Sorry none of us have posted a timely reply. You will find caregivers and those with HD here that are willing to help. In regards to your question, there isn't really a good way to answer. It could be HD or it could not as you know. Although the background is there that makes it possible I think testing and a good specialist are the only way to find out. I do suggest if testiby mikee - Huntington's Disease Support Center
Vicky, I hate to see you leave. I have enjoyed what you have shared and believe there is more that you could share in the future. You have to make your own decisions and you will be missed. In addition, I appreciate Steve and Marsha contributing so much time to us to give us a sounding board and in depth knowledge about what is going on. Personally, I don't do all of the social media and if Iby mikee - Huntington's Disease Support Center
Great article Will. Good perspective too. Mikeby mikee - Huntington's Disease Support Center
From my perspective I have to say I have disconnected from my abilities since becoming symptomatic. The mental vision of things and the ability to transfer that image to my wood just doesn't roll off my brain anymore. In fact the creative side of it is somewhat numbed. You have to think harder, the drive is not there not to mention the confusion around power equipment. Mikeby mikee - Huntington's Disease Support Center
NICE! Thank you for the breakdown. It is much easier to put into perspective and as skmf12 says it is very concise as usual. Knowing there are good works in process is very encouraging not only for us now but future generations who also have to bear the burden. Thanks for all you and Steve do. Mikeby mikee - Huntington's Disease Support Center
Marsha, I am curious. What is the potential method of delivery and what could the possible dangers be to those who first start the trials. I'm not trying to be a downer here. Just curious. Also, why does stress exasperate everything so quickly? Thanks, Mikeby mikee - Huntington's Disease Support Center
I can understand how you feel. However, my blood pressure became high after becoming symptomatic. It is probably related more to stress and the effects of the disease and not the disease itself (just for what it's worth). Perhaps if you can find the reason for the low BP you can get some energy back. Then again it may stay with you. Good Luck. Oh! Good luck to you Barb....again.... Mikby mikee - Huntington's Disease Support Center
That does sound promising. Thanks for the post. Mikeby mikee - Huntington's Disease Support Center
Hi Amber. I just realized you ask me about this on another post some time ago. Sorry. I feel like it can help to a degree. I'm not sure about symptoms but certainly anxiety and perhaps depression as well as OCD. One thing to keep in mind is have an open mind when he goes in. Follow the hypnotist instructions. Assure him the hypnotist cannot make him do anything he does not want to otherwise dby mikee - Huntington's Disease Support Center
I agree with you Will. Click on her name and she is a "therapist". Nothing wrong with "therapist", my wife is one (lucky me!!!). Perhaps she has some insight but the information is disturbing especially since a person with HD in a certain stage may take it as gospel and change some very good habits. Who knows. I will share something. Once I went to a Nature Path (sp). I waby mikee - Huntington's Disease Support Center
Disturbing it is. I'm surprised they even shared that information. Perhaps you may want to consider finding out how it could happen. Just a suggestion but if it happened to you, could it have happened to others. Mikeby mikee - Huntington's Disease Support Center
Thanks Marsha, makes sense. I asked about CoQ10 once and he told me I probably couldn't afford to purchase enough to be beneficial on a monthly basis, therefore the trials. Mikeby mikee - Huntington's Disease Support Center
Hope you get to feeling better Barb. Just curious you mentioned concussion earlier, could this be related. Mikeby mikee - Huntington's Disease Support Center
OK. Thanks Will. Mikeby mikee - Huntington's Disease Support Center
I have a question. If an individual is taking other medications for the typical issues such as high cholesterol, blood pressure, depression, etc., should your physicians be consulted prior to starting such regimens. I'm not trying to dampen the party but I am curious about interactions. No disrespect to our locals but I think they would provide an off the cuff answer or none at all. Thanks, Mby mikee - Huntington's Disease Support Center
Well I guess everyone post the same message multiple times as well. Ha Ha......I managed to post numerous times, sorry. Mikeby mikee - Huntington's Disease Support Center
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The statements about "everyone does that" or "it's just age" really rub me the wrong way too. People mean well but when you have HD you "know" it is not a normal response for you personally. It can be hurtful and sometime I find myself correcting those around me but it is usually not necessary. By the way, your post have been very interesting. Mikeby mikee - Huntington's Disease Support Center
Excellent! Having HD, it is somewhat reassuring to see this from someone else. Mikeby mikee - Huntington's Disease Support Center
Good for you. Life doesn't have to stop because of your diagnosis. Marsha gave great advice. Now I'm like the pot calling the kettle black because I could take better care of myself but enjoy yourself. If it gets to a point where you need to share then do so. Don't forget progression may not be something on the fast track for you. Good Luck, Mikeby mikee - Huntington's Disease Support Center
That's fine. Just didn't want you to think I was ignoring the correspondence. Enjoy the kids. Just checked the sent box...nothing.... Mikeby mikee - Huntington's Disease Support Center