Marsha, thank you for the detailed information. I definitely have a much better & clearer understanding of what happened than I did just from reading the posted article. I'm on a npo board & I appreciate the HDSA board being responsible stewards. I also greatly appreciate all of the other efforts & progress made in education, advocacy and family support. I'm so glad that all of the arby bella - Huntington's Disease Support Center
Wow, I had no idea that the money raised and/or donated wasn't going to research and finding a cure!! I have been involved with the IL chapter of HDSA since my mom was diagnosed 20 years ago!!! What the heck happened??by bella - Huntington's Disease Support Center
My grandmother had problems with senses i.e. distinguishing hot/cold, wet/dry, smells, etc. We always attributed this to HD. She also had the typical symptoms chorea movements, swallowing difficulties, balance, fine motor then gross motor skills, mood swings, falls, etc. My uncle had more psych based physical symptoms that various docs could find no physical cause for i.e. "phantom pain&quby bella - Huntington's Disease Support Center
So, I wanted to give you all an update. I met with the NH last week and there was a little progress. They backed down on requiring me to move her and agreed to get a new communication device. They actually followed up and used my suggestion to have her evaluated by a speech therapist again. The therapist is working on getting her a talking communication board. Progress. As far as care, they denyby bella - Huntington's Disease Support Center
Marlyssa, I honestly don't know if trauma can cause HD symptoms to begin. And I can't tell what caused the change in your husband. I'm so sorry for the pain, confusion, and anger that HD has brought to your life over the years. Unfortunately, sometimes the answers to "why" don't come. For myself, learning to find acceptance with what is has and continues to be the most powerful and freby bella - Huntington's Disease Support Center
I have a pHd family member who takes creatine and other supplements along with meds. But no at-risk members are taking them as far as I know. Are the supplements strongly suggested for those living at-risk? If so, are there specific ones I should take? Bellaby bella - Huntington's Disease Support Center
Hello all, I'm newly returned to the board. I'm 38 and have lived at-risk knowingly for most of those years. I grew up watching Hd change & take the grandmother I loved. She died in a NH at 70+. I'm not married but my bf and I have been together for 20 years this December. We're raising his beautiful niece, age 6 and have no biological children of our own. My mother, now 61, has late stageby bella - Huntington's Disease Support Center
My grandmother and one of her sisters (that we know of) died of HD complications. We think they inherited it from her father who died in a farming accident. Not sure about previous generations and other portions of the family including her deceased pHD sisters who refuse to acknowledge that it was HD. Out of her 13 children: 1 uncle died in infancy of other causes pHD: my mother, 2 aunts, andby bella - Huntington's Disease Support Center
As others have said, mood swings & "irrational behavior" can be an early sign of HD BUT they can also be signs of other mental health or emotional issues. You mentioned he's in recovery, is he actively involved in 12-step programs or other types of support? As a child of an alcoholic father and a pHD mom, I can honestly say that either illness can cause that type of behavior. Neitheby bella - Huntington's Disease Support Center
Pureed food and honey thickened liquids seem to be the easiest to swallow and cause the least choking. That helped reduce the choking for my mom for quite awhile. She went from regular food to mechanical soft ( more texture than pureed) and finally pureed as her swallowing ability decreased. Also, alternating food with liquids (bite, sip), limiting bite size to a teaspoon, and if necessary doubleby bella - Huntington's Disease Support Center
She has been seeing the same neurologist from our HD COE for years. Dr. Shannon's great and reviewed the hospital psych Dr.s med change suggestions and approved them. My mom is on a new cocktail as of last week. Unfortunately, the NH's new administration doesn't seem to be willing to educate themselves or their staff about HD. I'm planning to try again this week and regularly try to speak to andby bella - Huntington's Disease Support Center
I just rejoined the forum after many years because I need your help..My mom is one of many in our family with HD. I've been caring for her the past 20 years. We made the extremely difficult decision to place her in a NH about 10 years ago. Since then, she has moved several times as the HD progressed and I relocated. She is now 61, and over the past year her condition has deteriorated. She has extby bella - Huntington's Disease Support Center