ALS News Today Forums | LORRAINE N BERGKVIST | Activity https://alsnewstoday.com/forums/members/lorrainebergkvist/activity/ Activity feed for LORRAINE N BERGKVIST. Sun, 19 Apr 2026 12:54:12 -0500 https://buddypress.org/?v=2.19.0 en-US 30 hourly 2 e690f265873a7a45fb00508927b9ffc2 LORRAINE replied to the discussion Welcome to the Slow Progression Forum discussion page in the forum People with slow ALS progression https://alsnewstoday.com/forums/forums/topic/welcome-to-the-slow-progression-forum-discussion-page/#post-26352 Sat, 22 Mar 2025 17:24:31 -0500 Reply to Welcome to the Slow Progression Forum discussion page

My name is Lorraine. I am a slow progressor according to my neurologist at Johns Hopkins. I started losing my voice in 2019; was diagnosed in 2021. I currently have an electric w/c and I live in a very active retirement community. I take rilutek and radicava orally. I enjoy walking in the pool, bridge, family, friends, and French Club. I use…

Read more

]]> b7a9353103d75e7c9e5bfbfc5a1d7bc2 LORRAINE replied to the discussion Tell us 5 lessons you have learned this year that help you live with ALS in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/tell-us-5-lessons-you-have-learned-this-year-that-help-you-live-with-als/#post-24853 Wed, 15 Nov 2023 15:27:59 -0600 Reply to Tell us 5 lessons you have learned this year that help you live with ALS

1. I do everything slowly.

2. I have to be open to accept help from people.

3. It requires all my attention to walk so I can’t be distracted.

4. The best thing I did was hire an aide 3 mornings a week; that gives my husband a chance to escape.

5. I gave up driving.

]]> 90b0cb01cb9fe6308b6acbfcdf7567ef LORRAINE replied to the discussion Major Stressors Caregivers Face in the forum Caregivers and Family ​ https://alsnewstoday.com/forums/forums/topic/major-stressors-caregivers-face/#post-24723 Fri, 13 Oct 2023 17:23:49 -0500 Reply to Major Stressors Caregivers Face

I hired an aide for 3 mornings a week to give my husband (my caretaker) a chance to go out.

]]> 947bdcd5492376a62008e1960695e427 LORRAINE replied to the discussion Do you have a funny moment you want to share? in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/do-you-have-a-funny-moment-you-want-to-share/#post-24619 Thu, 14 Sep 2023 23:43:29 -0500 Reply to Do you have a funny moment you want to share?

I can’t talk (or at least not on the phone) and my husband is partly deaf. This makes us the perfect couple and makes people laugh at our commitment!

]]> 4e87e16c765565540fecfe591d048cfa LORRAINE replied to the discussion Relyvrio in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/relyvrio/#post-24056 Mon, 05 Jun 2023 20:38:05 -0500 Reply to Relyvrio

I was diagnosed in 2018 and took Radicava IV until they came out with the oral version. I take riluzole, also. When I started on the 2 packets a day of Relyvrio I experienced alot of abdominal discomfort. So I returned to once a day. My PCP said today I should try one day on and day off. I’ll let you know how that goes.

]]> c9ce6c100918d1015354cfc93cbb6eef LORRAINE became a registered member https://alsnewstoday.com/forums/activity/p/19389/ Wed, 31 May 2023 13:17:34 -0500 1