Part 2 of Help 4 HD HIPE Virtual~March.mp4

FESCH.TV INFORMIERT:

Here are some questions that are discussed by the expert panel at the Help 4 HD HIPE Virtual event in March:
Why is it that my brother, even though he has been diagnosed HD, was taken off his medications when he was recently put into jail? He went 10 days without medication. They were very dismissive when I called to talk to them about his care needs. What do I do if this happens again?
My partner is unsafe in the things he loves, like hiking, biking, etc. I must constantly make excuses as to why we aren’t participating as much. The truth is, I don’t know how to break his heart and tell him that I am scared he will become injured. Do you help with situations like this in your clinic, and is it something I can encourage our team to talk to him about? If so, who would be the person to ask to talk to?
I am starting the process of being tested. I have an appointment with a genetics counselor, what questions do you suggest I ask? How can I be best prepared?
My brother has been in the hospital twice now for suicide attempts. I feel like he isn’t getting the proper mental health support and keeps going back to thoughts to ending his life. Are there any services I could be using to stop this continuing cycle also I heard that suicide thoughts seem to go away as the disease progresses, is this true.
I am tired, really tired of watching people watch my sister struggle with her speech and gait in public. I get angry, and I know it’s a normal response, but I need ideas on how to get past wanting to yell at these people.
I am confused about the Roche trial. Can you clarify what benefit there really is for this subgroup of patients, when it was mentioned many times that the favorable changes seen were „not clinically significant“? Why would they be doing another trial that didn’t show clinical significance?
Do you recommend traveling 5-6 hours away to a center of excellence? I am struggling to justify the travel time and having to likely stay overnight. I wonder what that will look like as I develop more symptoms and am unable to drive. I do not have a care partner currently, either. Can I receive telemedicine? I am in Texas.
Can you please clarify why people in the prodromal stage of HD cant participate in clinical trials? Not Enroll but others.