Angela
Forum Replies Created
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Crispr and C9orf72 research and development by Biogen.
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Hello my ALS comrades, I feel or have felt all the above emotions. I have C9orf72 for 2.5 years or more. I have a devoted husband and two young teens on the journey with me. I’m lucky to have enough money and insurance  to not worry about not having things to make my days easier. However the biggest help in facing death has been the support of people around me: ALSA Support Group, friends, family, strangers with a smile and healthcare providers. I found a therapist when I started losing my voice 2 years ago and started biofeedback. This helps me calm myself through tough times and I augment it with a weekly zoom group meditation. I have learned to focus on the moment I am in, and to let go of anxiety about the future for the most part. I still grieve when I loose function but I now realize that we all die and I want to be present for my kids and husband now. I feel we’re all connected through god or our hearts so reach out for each other with a smile or hand squeeze.
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I have bulbar onset and atrophy in forearms and calves primarily. I have generally had no pain but I am retired and try to focus on being in the present. I meditate to reduce stress because I heard that it can advance the disease. I also focus on blending anti-inflammatory foods into my g-tube meals. Anecdotally, I skipped a night with my bipap and went to bed angry. I was in pain the next day having not slept well. I felt cramps in different muscles and arthritis like pain in my hands. I truly feel that good sleep and diet helps me. I wish you all peace and less pain.
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I have had a g tube for over a year now . I realized that if I get 5 or 6 eight oz glasses of warm water bolused in addition to my meals, that I feel better, have less mucus and more regular bowel movements. Once in a while I really get a bad taste in my mouth or have excess drainage and I use a sinus rinse . I can’t swallow but this just runs out into the sink and provides relief. I also take NUEDEXTA for my PBA. Happy to hear others tips.