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Debra Kaufman replied to the topic The love of my life ( Kenneth E Steadham) in the forum In Loving Memory 4 months ago
I’m so sorry for your loss. Take good care of yourself and may his memory be a blessing.
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Debra Kaufman replied to the topic In memory of Marianne Opilla in the forum In Loving Memory 10 months, 2 weeks ago
Amy – my heartfelt condolences to you and the rest of your family on the loss of your mother. May her memory be a blessing.
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Debra Kaufman replied to the topic In Memory of Rick Jobus in the forum In Loving Memory 11 months, 2 weeks ago
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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Debra Kaufman replied to the topic In Memory of My Cousin Bruce in the forum In Loving Memory 1 year, 4 months ago
I am so sorry for your loss, Amanda….
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Debra Kaufman replied to the topic Going to the Dentist in the forum Living With ALS 1 year, 10 months ago
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]
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Debra Kaufman replied to the topic The Waiting is the Hardest Part in the forum Diagnosis Information and General Questions 1 year, 11 months ago
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]
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Debra Kaufman replied to the topic When friends know how to "cure" ALS in the forum Living With ALS 2 years, 1 month ago
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]
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Debra Kaufman replied to the topic Pre-fALS study in the forum Research Topics 2 years, 1 month ago
Keep us in the loop ! It does sound exciting!
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Debra Kaufman replied to the topic ALS Life Expectancy vs. Quality Of Life in the forum Living With ALS 2 years, 2 months ago
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]
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Debra Kaufman replied to the topic Using Ritual to Navigate ALS Transitions in the forum Living With ALS 2 years, 7 months ago
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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Debra Kaufman started the topic To voice bank or not voice bank in the forum Mobility Aides, Assistive Technology and Medical Equipment 2 years, 8 months ago
I see that there has been a bit of discussion on the site about whether or not to voice bank. Anyone here care to share their decision-making process and/or experiences?
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Amanda and
Debra Kaufman are now friends 2 years, 8 months ago
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Debra Kaufman started the topic NPR story on AMX0035 in the forum Research Topics 2 years, 9 months ago
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Debra Kaufman replied to the topic Use of Off label treatments. in the forum Research Topics 2 years, 9 months ago
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]
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Debra Kaufman replied to the topic How do you control your negative mental chatter? in the forum Living With ALS 2 years, 9 months ago
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]
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Debra Kaufman started the topic Rilozole experience? in the forum A Forum for ALS Caregivers 2 years, 10 months ago
Hi: My cousin is the pALS, and she’s having some trouble adapting to the full Riluzole dose. She’s supposed to take two 50mg pills, one at night and one in the morning. When she takes the one in the morning, it makes her too dizzy so she stopped taking it. Has anyone experimented with taking a half dose in the morning to gain tolerance? Thanks!
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Debra Kaufman replied to the topic Investigational (experimental) therapies in the forum Research Topics 2 years, 11 months ago
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]
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Debra Kaufman posted a new activity comment 2 years, 11 months ago
Thanks, Dagmar. I am in learning mode, so I plan to read up as much as I can. I’m guessing I’ll find lots of answers to my questions. I look forward to learning from the community.
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Debra Kaufman became a registered member 2 years, 11 months ago
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Hello Debra,
Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or even…[Read more]
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Thanks, Dagmar. I am in learning mode, so I plan to read up as much as I can. I’m guessing I’ll find lots of answers to my questions. I look forward to learning from the community.
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I am almost 3years now I was misdiagnosed for almost 2 year’s but I only have been diagnosed for 18 months ago 3 years 6 months, 2to5 life span average person only living for 3years guess I’ll owe ALS at least 6 months
Frankie – – I know how all the “official” descriptions of ALS and what it “can” do, can become a constant drumbeat in our brains. But, don’t get hung up on the predictions – – we all don’t leave our doctor’s office with an “expiration date” stanped on our forehead. So many advancements have been made during the past few years – – patients are…[Read more]