Comments for ALS News Today – The Web's Daily Resource for ALS News

Comment on These bathroom safety modifications were a great decision by Dagmar Munn

Dagmar Munn — Fri, 24 May 2024 01:41:23 +0000

In reply to Paul Seger. Thank you Paul :-)

Comment on These bathroom safety modifications were a great decision by Paul Seger

Paul Seger — Thu, 23 May 2024 23:02:14 +0000

I love your sensible and timely advice.
Although l am fully mobile and enjoy a pain-free life — so far. But, at 86 a simple and fall could result in a broken hip, hospital, drugs, lVs, catheters, sepsis and/or pneumonia, and death.
Oh yes, l’m careful.
Thanks for the reminder.

Comment on Looking back on the progress (really) in ALS awareness by Dagmar Munn

Dagmar Munn — Wed, 22 May 2024 20:33:05 +0000

In reply to Paul Seger. Thank you Paul. Best wishes to you both. Dagmar

Comment on Looking back on the progress (really) in ALS awareness by Paul Seger

Paul Seger — Wed, 22 May 2024 20:09:04 +0000

Hi Dagmar,
Always read your remarks. Very helpful and interesting.
My son is a long-hauler like you. Twelve years since his diagnosis.
Best of luck in your struggles with this horrid disease.
Paul Seger

Comment on Why I share with others the details of my late husband’s life with ALS by Maureen J

Maureen J — Sat, 18 May 2024 18:35:11 +0000

In reply to Lucille Dolly Syrek.

Re: Lucille. There’s an article with some information, but due to the uncertainty of ALS, it doesn’t really give a progression rate of the different stages. More on what the 7 stages are in the typical ALS vague explanation.

https://www.dvcstem.com/post/7-stages-of-als

I lost my husband in 2022 after his four 1/2 year battle with this cruel disease. He was 40 years old, leaving me and our two young daughters (4 &7) behind. He was a participant in the Brainstorm Stem Cell trial, which is a whole other piece of emotion. I was his main care giver with some nursing help for a few hours a day while I tried to work and be a mom. I am not sure I’ll ever shake the anger I have towards this disease. I am still on the ALS news emails and mostly pass it by, but read this article and thought I’d comment.

And thank you, Juliet, for this article. Hits home. I admire your determination to continue the fight to end ALS. The ALS community is lucky to have you.

Comment on Why I share with others the details of my late husband’s life with ALS by Cathie Lienemann

Cathie Lienemann — Tue, 14 May 2024 15:56:49 +0000

Juliet, I appreciated your well written letter expressing many feeling that our families share. My husband, Rich, has been battling ALS for over five years. Everyday is very challenging. He has set goals for himself, such as attending our youngest daughters wedding, then being there to meet his new grandson 10 months later. Just recently he celebrated our grandsons first birthday. Although Rich has very limited mobility and communication skills, his relationship with his grandson is the best therapy. We live each day waiting and praying for the ALS breakthrough to end this disease.

Comment on When a loved one has ALS, the effects of trauma are ever present by Cathy pallman

Cathy pallman — Mon, 13 May 2024 23:44:33 +0000

I am so sorry for you and your family. My husband was diagnosed in feb with als. We are struggling with the prospects of this terrible disease.

Comment on Why I share with others the details of my late husband’s life with ALS by Debbie Harris

Debbie Harris — Mon, 13 May 2024 22:27:35 +0000

Thank you for sharing! My wondering son-in-love Simon age 50 has it and was diagnosed July 2023. The heartbreak of watching him decline so fast is almost unbearable. He can no longer talk or walk. He just got a feeding tube. He has a lot of pain from the twitching in his chest and legs. The disease is very cruel! Our daughter says it’s an honor to take care of her husband 24/7.
Simon would not join any ALS groups either and our daughter is so busy caring for him she doesn’t have time to research or read anything about it. That’s why I’m on here to help them. They also have four kids with the youngest age eight. Three are girls and Simon cries a lot knowing he’ll never get to walk his daughters down the isle or see them graduate high school.
I pray for more research and a cure! The disease is horribly expensive to have. They tried stem cells twice and other treatments to no avail. The Progression rate differs for each person, along with when symptoms happen.

Comment on Why I share with others the details of my late husband’s life with ALS by Lucille Dolly Syrek

Lucille Dolly Syrek — Mon, 13 May 2024 17:27:49 +0000

My husband Matt was diagnosed with ALS six months ago. Symptoms were trouble walking without a cane slow short steps. He got the flu then lost all control of his legs. Like overnight our lives have changed. Released home from the hospital we needed 24hr care givers. Hospital bed, Hoyer lift, electric wheelchair. His symptoms came on so fast after he was diagnosed. We don’t know if his symptoms will continue to accelerate or not as everyone’s case is different. There are no local support groups that I could find. I would love to learn the progression rate at different stages.

Comment on Time away from caregiving for my husband was restorative by Brian Stanfield

Brian Stanfield — Mon, 13 May 2024 02:39:28 +0000

Belated Happy Mothers day Kristin! Always praying for your family, this week specifically for Todd’s vision and for the rest of your family to enjoy biscuits and sausage gravy.