ALS News Today Forums | MJC17 | Activity https://alsnewstoday.com/forums/members/mjc17/activity/ Activity feed for MJC17. Sun, 05 Apr 2026 07:17:06 -0500 https://buddypress.org/?v=2.19.0 en-US 30 hourly 2 5b19a718ddc19e436fd862a4b2fbc42d MJC17 replied to the discussion Do you ever feel “survivor’s guilt” about being a slow progressor? in the forum People with slow ALS progression https://alsnewstoday.com/forums/forums/topic/do-you-ever-feel-survivors-guilt-about-being-a-slow-progressor/#post-26923 Thu, 25 Dec 2025 20:57:15 -0600 Reply to Do you ever feel “survivor’s guilt” about being a slow progressor?

I was diagnosed with Bulbar-onset ALS in April 2024 and have been told by my interdisiplinary team that I’m a slow progressor. However, the last month has been a real “downer,” in terms of ALSFR score. So…I’m thinking the term “slow progressor” is not always used in the same way. I see the “living past the predicted 3-5 year prognosis”…

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]]> e6d55420c321fb8c2b9d9046d6914c4b MJC17 replied to the discussion Caregiving assistance for ALS: family and friends or paid help? in the forum Caregivers and Family ​ https://alsnewstoday.com/forums/forums/topic/caregiving-assistance-for-als-family-and-friends-or-paid-help/#post-26546 Fri, 06 Jun 2025 22:04:43 -0500 Reply to Caregiving assistance for ALS: family and friends or paid help?

As they say, it takes a village! We rely on both. I have bulbar-onset ALS, and my needs are primarily food-related and communication. However, my husband has moderate dementia plus cardiac problems, so caregiving for the two of us can be quite a challenge. It’s a blessing to have both daughters nearby, but they have their own families…

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]]> b789e2221cbd5b9f129fe25b51cfc203 MJC17 replied to the discussion Feeding Tube and Syringe in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/feeding-tube-and-syringe/#post-26412 Fri, 18 Apr 2025 20:53:53 -0500 Reply to Feeding Tube and Syringe

I’m new to the forum and ALS, but have a feeding tube to help me keep my weight up. I’ve read that syringes should only be used once, and then discarded. I’ve been using the ones the clinic gave me until they won’t push any more. Does anyone have precise recommendations for syringe use? Also, do you get your syringes from medical supply…

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]]> 41bb25f7817bf568e581eb82d199ef7f MJC17 became a registered member https://alsnewstoday.com/forums/activity/p/24757/ Mon, 03 Mar 2025 14:43:26 -0600 2