Search results for query: *

Hey Everyone! Over the past month or so it seems if I try to do things (walk with cane or walker) It’s been hot in Texas but just being active not running marathons or anything -as if I could lol. I’d try and fall. It seems I sprain muscles easier and have had some bad bouts of spasticity. One...

Hello everyone Merry Christmas and Happy New Year’s! Well I made it through Christmas intact very sore. I’m the Aunt of 20 nieces and nephews and Mom to 2 now 3 with my son in law. This year I had to be creative for gifts make chocolates, brittle, and bath bombs. On top of a nephew in distress...

Hello everyone! So I had my first Speech therapy session today. I’m losing voice power a bit so order for voice banking and my therapist is ordering several eye gaze machines to figure out what will work best so I can practice before I need it. Excellent care but my PT therapist not so...

Hello everyone, It’s been busy down here in Houston. My daughter was married two weeks ago and it was beautiful. I had the privilege to walk her down the aisle. Lots of fun and family. Last week I had the week of doctor appointments. Confirmed C9orf72 full Mutation >145 alleles. So I have...

Talking with my friend an older man R. His partner my friend Mark an artist whom passed last year. Both survived the AIDS epidemic in the 80s. My friend has AIDS, Hep C etc. When he lost Mark my first thought was him. So I adopted him, we all need people to care. We were chatting today he’s had...

Hello all, I was diagnosed in August of this year and have been having symptoms for probably a year before. In my career due to my illness I just can’t do it anymore. Being a nurse the physical demands and my hand and arm weakness was making it difficult doing simple procedures. Fear of losing...

Hello, I’m a 45 yo woman, C9orf72 positive, my Father passed with FTD/MND, his brother my Uncle passed shortly after diagnosis of ALS. I have watched the UPENN FTD Facebook site, their research helped me understand my Dad’s illness. At the time no one knew their was a familial link. When my...