Debra Kaufman

I am so sorry to hear that Rick Jobus has died. He was a wonderful writer and I always tried to give him positive feedback on his great columns. My thoughts are with his family.

I am so sorry for your loss, Amanda….

There are dental hygienists and even dentists who will come to your home. I recently did the research on that for my cousin who lives in Long Beach. There are quite a few in Los Angeles, but only two would go to Long Beach – which was all we needed.

There are hygienists who specialize in going to nursing homes and/or working with people who…[Read more]

Amanda – you are my hero and I know that so many people on this site get a lot from your contributions. I’m sorry you are going through this. Waiting is the hardest part. Next time you see the doctor, try recording what he says either on your phone or with a small inexpensive digital tape recorder. That way you catch everything he said and can…[Read more]

Yes, I had an unfortunate incident. When I found out my cousin’s diagnosis of ALS, I was very upset and shocked. I confided in two friends, who immediately started bombarding me with information about a diet that would “cure” ALS because it “cured” MS. I tried to thank them for the information and change the subject to get them to stop, but they…[Read more]

Keep us in the loop ! It does sound exciting!

What constitutes quality of life is very personal, as Richard stated above. It is also a moving goalpost. A landmark loss — like having to be in a wheelchair — may seem intolerable when one isn’t in a wheelchair. But once in a wheelchair, it may seem hard but still tolerable. The power of the will to live can’t be underestimated, and everyone…[Read more]

Thanks for sharing your experiences in making this journey a spiritual path. I’m really glad it works for you and that you look for ways to reframe what you’re going through. Can you share some of your Odes??

Hi Steve: Right after my cousin was diagnosed with ALS, I started researching treatments and found the AMX-005 possibility. I was put in touch with someone who has been taking this off-label for his ALS. He got the Tudca online and the other drug via the European Union (long story and his to tell).  Although he knew someone who reportedly had…[Read more]

Hi Dagmar – I am not pALS but I am a cancer survivor and I dealt with a lot of my anxiety/fear/racing thoughts with meditation, more specifically lovingkindness meditation (or metta), which is aimed directly at comforting distress. I sometimes did guided meditations which you can find on Google. I found the meditations very very useful, and still…[Read more]

Regarding AMX0035, I have been trying to find out where the Stage 3 trials are at. There has been radio silence since the end of Stage 2 trials in December last year. I wrote Amylyx directly but received no reply – there is probably some embargo. I’ve heard that Stage 2 trials were very positive and the company was asking for compassionate use…[Read more]