Anyone have situations to share on how to deal with drug abuse and HD... Like, being untested and symptomatic but heavily addicted to drugs. Heroin, meth. How do you help someone when the HD and drugs are working against the persons reality. Getting him tested is next to impossible... he can't manage to get through the processby bluedaisy - Huntington's Disease Support Center
So, good to hear life is clam and J is doing well! I have followed your postings from when you first started and think of your situation often...by bluedaisy - Huntington's Disease Support Center
So sorry to hear this news...by bluedaisy - Huntington's Disease Support Center
My dad doesn't regret testing positive. In fact, he made life changes and now (even 5 years after diagnosis) lives a better and more fullfilling life than he did during my whole childhood. I hate seeing my dad and my sis suffering with HD, but I am amazed at their strength and courage to keep living and growing with HD. Please don't leave your family. In my experience, that causes worse suffeby bluedaisy - Huntington's Disease Support Center
Oh my, do you fave gaurdianship or power of attorney? Sounds like you may need to talk with a financial advisor &/or have his medical docs determine if he is competent. IDK ...by bluedaisy - Huntington's Disease Support Center
This is awesome! Eliminates time testing mice for treatments???? I think that is what they were saying.... Correct me if I am wrong Thanks for sharing!by bluedaisy - Huntington's Disease Support Center
It sounds, to me, that you are being very productive and contributing to society. Your writing is very clear, focused, and expressive. If you can't write, continue to type... The fact that you are depressed over a friend moving means you are human. It sounds to me you are positively living and acting in the ways that you are still able. Your abilities may change over time, but you(everyone) alwayby bluedaisy - Huntington's Disease Support Center
I think I remember you said you do this, but if not.... keep a notebook logging every negative interaction with R. Missed parenting time, conflict, any time he doesn't follow the court guidelines. Clearly this won't be over anytime soon and you may need to go back to court. Best to have that documentation.by bluedaisy - Huntington's Disease Support Center
My uncle got a medical marijuana card when he was diagnosed HD positive and symptomatic. This is in the state of Michigan. Not really sure how much it helped him, as he was kind of a recluse. Then he ended his battle abruptly. He was very paraniod. Not sure if marjuana helped that aspect positively...by bluedaisy - Huntington's Disease Support Center
What a painful situation you are in. I was thinking of you the other day wondering how things were going because I haven't seen you post in a while. Is it possible without a supervisor present he won't be able to have those overnight visits? I can't imgaine what it must feel like to know that any moment he could come and decide to be a part of J's life. It is too bad that R doesn't have more of aby bluedaisy - Huntington's Disease Support Center
A poem that is powerful and clearly demonstrates pain. I understand, hard to read. Brings ache to my heart. HD is multifaceted in perceptions, ethics, and understanding. One thing that helps me deal with the secrecy of my HD genealogy is an understanding of the lack of understanding in previous generations. I love the mysterious woman I will never know for leaving her baby boy (my HD+ grandpaby bluedaisy - Huntington's Disease Support Center
I truly think that some of those questions are not for us to answer, it is up to Dr. Gilmer's family: just as all of us have difficult situations to navigate through the course of HD. I don't believe he should be held in prison by default. Second, we can't assume based on our own preconcieved notions that his mother doesn't want to care for him or that he doesn't have people who want to care forby bluedaisy - Huntington's Disease Support Center
I was listening to NPR yesterday and was listening to this story (totally unaware of the ending of this story) I kept thinking this man's problem sounds like HD. And it was. A story about a doctor who kills his father and wrongly convicted: Dr. Vince Gilmer. Its about an hour long but a truly heartbreaking and important message. A message about mental illness and stereotyping and not actually lisby bluedaisy - Huntington's Disease Support Center
Hey Wendy, sorry to hear about your struggles. HD was a mystery in my family too for awhile. I am pretty sure, as long as HD had progressed into later stages, that they can tell from an autopsy if it was HD. The brain is quite damaged from HD. I know my sis's MRI came back normal even when sh was symptomatic. I hope it is not HD for your family. I, personally, would wait to see your Neuro inby bluedaisy - Huntington's Disease Support Center
So sorry for what you and your boyfriend are going through. Here is a website with a chart that easily displays a likelihood of onset age corresponding to CAG numbers. Please note that it says it is the age range in which 50% of HD persons will begin seeing symptoms. Half of people with HD defy those ages. Earlier or later. Maybe you could attempt to inspire your boyfriend to "fight" byby bluedaisy - Huntington's Disease Support Center
My sis also went through a period where she would freeze up, jaw locking arms and fingers locking, convulsing, and falling unable to breathe fully. She would have many episodes a week, sometimes more than one in a day. Many trips to the hosiptal before it just became normal. Doctors said it was a panic attack and told her to learn how to relax! At this point her HD symptoms were just beginning toby bluedaisy - Huntington's Disease Support Center
Just trying to do some family history. Does anyone here have a family history of HD from Amarillo, Texas (Potter County, Texas)? My grandpa (HD+) was born in Amarillo, Texas in 1930 and then adopted. My family thinks his birth mother's name was Mary Anderson????? His birth certifucate has his adoptive parents names ( not sure if his adoption went through the legal channels like we have now dayby bluedaisy - Huntington's Disease Support Center
Hello Violet! Hope you coping well with your diagnosis.by bluedaisy - Huntington's Disease Support Center
I was having some muscle spasms, mood disturbances, balance issues, obssessive, and inability to concentrate I went in for HD confirmation and came out with a severe sleep apnea diagonsis. Symptoms are only symptoms and don't necessarily mean HD diagnosis. Turns out my symptoms were from a VERY manageable health concern that can be 100% controlled. I just look odd with my CPAP at night. Iby bluedaisy - Huntington's Disease Support Center
Katie, I didn't have any insurance issues. The test was covered under my plan and I didn't consider long-term care insurance. I propably should have, but I had reached a point that was consuming my life. I had to just do it. I didn't tell anyone. I had to do it fast and not consider the after effects, because in the end I didn't care anymore about insurance or financials. I really felt my sanityby bluedaisy - Huntington's Disease Support Center
Well, my sis's doctors acted as if I was some internet diagnosing fool when I voiced my concerns about the effects of Haldol on my sis. "Did you ever consider this is just a natural result of her progressing disease?" My response "It just seems a little too exceptional that she stopped talking and only would reply 'fine' or 'yup' to any question within 2 weeks of being on haldol!&qby bluedaisy - Huntington's Disease Support Center
Hello. It's a tough decision to say the least, I hope you find what works for you. I say stay on the fence until you know YOU are ready. I am 33. At 27 I was determined to get tested, I had to know. I didn't test because I didn't have insurance or a decent career (job). Then I finally got that job (teaching) and insurance. At the same time I started to really see the horrible effects of HD onby bluedaisy - Huntington's Disease Support Center
This is what my family is experiencing now with my sister. It really bothers me. She barely says anything and she (since we became adults) has alsways been my friend: someone I could always talk too, laugh with, and complain about our mother with... I really miss being able to do that. SHe replies "Yup" to just about everything. What makes it worse is that no one (family or friends)by bluedaisy - Huntington's Disease Support Center
Wow, Eve, so lucky for your friend that they had a second doctor read it! Our life is really in God's hands!by bluedaisy - Huntington's Disease Support Center
My dad and then my sis; were both diagnosed symptomatic and came back with normal MRI results. I think it doesn't mean anything, because they both have severe symptoms. My guess would be that an abnormal MRI would only aid in the diagnosis, but a normal MRI doesn't mean jack (null hypothesis: makes no difference concerning the HD severity).by bluedaisy - Huntington's Disease Support Center
Hello, Jon! This is a great support forum. The people here have sound advice and are really the only people who I've found who really get a lot of the issues I've experienced with HD.by bluedaisy - Huntington's Disease Support Center
Josh, I'm sorry for your loss of your grandma. The initial shock of learning about this disease is horrible. I was even angry at the people in the HD support group because they seemed to still be living life... I didn't get how they could stand this. Then time passes and you just learn to accept HD and try to enjoy all the good in life. Sometimes the reality of it really gets to me. Like when I rby bluedaisy - Huntington's Disease Support Center
Not sure, but my sis has HD and she lost her sense of smell years agoby bluedaisy - Huntington's Disease Support Center
So happy for youby bluedaisy - Huntington's Disease Support Center