- Oct 10, 2010
- Lost a loved one
Hello all! I have been reading the forum and decided to join because I feel the inevitable is about to happen. My dad started with an unusual pain in his shoulder in February and now has atrophy in both arms, can no longer write, has lost 60 pounds, and is falling all of the time. His most recent symptom is shaking of the hands and jaw. We finally got him talked into going to the va after running around and shopping for MRIs and seeing a chiropractor( who says he has parsonage turners syndrome) and a neurologist that is doing all kinds of tests, and in July threw the possibility of ALS at us. My dad is a very strong person, and never wantsanyone to worry, so I have been wondering if his fear is blocking him from hearing everything these doctors have been saying. So I decided to go with him to his first appointment at the va this week and I want to know what kind of questions I should ask. I love my dad so much, and the thought of losing him bogs me down everyday! I plan on sharing the caregiving with my step mother and my husband (who is a paramedic). In my heart of hearts, since the mention of ALS in July has been brought to the table, watching his decline, and researching every neuromuscular disorder discovered, I am sad to think the only answer is ALS. He has had a ncv test, that the doctor was really concerened about, but I think that because dad has been paying out of pocket, they have not moved forward with more. The va will be a good start I think. I just need advice for my scattered brain at the moment. His appointment is on Thursday. Thanks to all and my heart and prayers go out to each and everyone of you who are fighting ALS and for your caregivers.