1. starente15

    Questions for Clinic Visit #2

    Good morning everyone. We have our second clinic visit next Friday (was supposed to be in February but was moved up due to what seems like quicker progression). I was wondering if there were any questions I should be thinking of. I go with a list to ensure we get as much info as possible but...
  2. T

    New Long Distance Caregiver Challenges

    I have just joined this forum and having reading some entries i know that I'll get some good advice on some pressing issues. Background My 84 year old mother who lives in Montreal is awaiting her formal diagnosis of Bulbar ALS. Symptoms started in March and her voice and speech and breathing...
  3. D

    Need to wihine and be thankful at the same time

    My PALS, DX'd a year ago is now unable to use hands, or arms and is in a powerchair nearly full-time. So I do his meds, shower, dress, toilet (thank you bidet!) and feed him. His sister, a most loving generous woman is staying nearby in her RV to provide help but I still have difficulty with...
  4. BK2011

    Merry Christmas

    We made yet another one. Wish ya'll a very Merry Christmas. Hope all of you are as blessed this season as I have been. Spent tonight with my wife, three daughters, three son-in-laws, six grandkids, brother & sister-in-law, and various other family and friends. Tracked Santa on
  5. HeatherFeather

    Potty 101 or has this ever happened to you?

    Yesterday was the first day we went out to someone's house for supper since Ron was diagnosed beginning of November. He could walk then, just a few steps with my help. Now he is in a wheelchair as he can't balance a walker anymore. For one thing, I was sooooo very worried about the steep stone...
  6. R

    Relieved, but not sure if I believe.

    We visited the neurologist today (follow up from the abnormal EMG). Neurologist believes this is *NOT* ALS. (omg, I am so relieved!). He thinks that the gait/ balance issues are a result of damage to her spine b/c of compression & scar tissue. He said if there was damage in the cervical spine...
  7. C

    Predictive testing

    My husband has a history of mnd in his family. His mother, auntie and brother having all had this horrible disease and sadly passed away. I think his grandmother also had this disease. They have identified the gene alteration that is causing this in his family using his brothers DNA; its FUS. I...
  8. 2

    ALS and the holidays

    Anyone else struggling with the holidays? Is this my last Christmas? What shape will I be in by next Christmas? I don't want to be The Grinch or Scrooge and ruin other people's Christmas. I have been making out and mailing Christmas cards. Some people know about the ALS. Others are getting...
  9. Grumpy'sWife

    Thanksgiving, Grumpy's Birthday and Mine too!

    Grumpy and I want to wish everyone a happy Thanksgiving! Today is also Grumpy's birthday so needless to say it feels like our home was invaded by everyone and their brother. Since tomorrow is my birthday, everyone decided to drop in even if they didn't stay for dinner. We cooked a 22 pound...
  10. R

    a sensitive question.

    My brother may be near the end of his ALS journey. My question pertains to those who've had their loved ones elect to discontinue ventilation. Does anyone here have any experience with that? If so, please message me. Thank you!