debra-kaufman
Forum Replies Created
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I’m so sorry for your loss. Take good care of yourself and may his memory be a blessing.
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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.
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I am so sorry for your loss, Amanda….
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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 cannot “go” to the dentist office. They may not have experience with ALS but have worked on many people who are paralyzed or otherwise impaired. Here’s the link to the Dental Hygienist Association which is probably a good starting point: https://www.adha.org/
Good luck!
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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 listen to it later when your head isn’t spinning as much. Just a suggestion. I’m rooting for you. All the best.
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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 simply wouldn’t let it be and tried very hard to convert me to their POV. Not my proudest moment but I got really angry at them for such a clueless, insensitive way to respond to my news. All I wanted to hear was “I’m sorry. That must be hard.” I know that people respond with “cures” as a way of not dealing with the reality or illness and death, but it was very hurtful and not what I needed to hear.
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Keep us in the loop ! It does sound exciting!
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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 has their own personal line in the sand — that even they might not be able to predict.
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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??
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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 really good results from this, he said that he had not had any noticeable results.
I became kind of obsessed with the status of AXM-005 since it had been through Phase 3 clinical trials, apparently successfully. I emailed the company and had no reply. I even enlisted the help of a friend who is a doctor working in the pharmaceutical industry. He found some of the research and said that the lack of forward movement after the trials could indicate bad side effects or many other possibilities. So it remains a mystery.
Meanwhile, my cousin hasn’t shown a strong interest in trying this off-label, so I’ve let it rest. Good luck. I know other people are pursuing this off-label. If you do, please share your wife’s experiences.
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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 practice it. I am interested in techniques that other people use.
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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 release. I have an MD/Ph.D. friend who works for a pharmaceutical company – he has done work in ALS before and is interested, so he’s trying to do some research for me on what’s going on with AMX0035 – if he does, I will post it here. If anybody else has any news, I’d appreciate hearing about it! Many thanks!
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Amy – my heartfelt condolences to you and the rest of your family on the loss of your mother. May her memory be a blessing.