MaryConnolly

Please carefully read this very long press release about Radicava ORS. There are links to resources including the JourneyMate program which may help you understand and provide information and support for obtaining Radicava ORS.  https://www.mt-pharma-america.com/2022/05/12/mitsubishi-tanabe-pharma-america-announces-fda-approval-for-the-treatment-of-als/

We’re excited to have a non-infusion option! My husband has been on Radicava for ~2.5 years and I was trained to administer the drug by infusion when he started treatment early in 2020. A nurse comes to the house to activate the port at the beginning of a cycle and then mid-cycle to change the needle. I’ve been trained to deactivate the port and…[Read more]

This is such a hard question to answer. All I can offer is “there is no control _____” fill in the blank of the name of your loved one. Were there a scientific control for my pALS I would have a more definite answer. So yeah, I don’t know if any of the meds (FDA or experimental) are working. And I can’t tell you the impact of faith, positive…[Read more]

Dagmar-do you have a link to your ‘rehab’ program? I’ve subscribed to your blog and thought I saw something there, but alas I can’t find it. Thanks-Mary

Awesome Lisa! Just awesome. Thanks for representing us!

Have you looked into the Healey ALS Platform trial at Massachusetts General Hospital(Harvard). Here’s the link: https://www.massgeneral.org/neurology/als/research/platform-trial  I don’t know where you live, but their clinical trials which are testing multiple drugs at the same time, are recruiting and trials are going on now at 53 sites across…[Read more]

Thank you Jim! In some of the webinars caregivers have described ceiling tracks and I didn’t have a brand or knew what they were called–now I do. We were preparing to remodel our home and now, post ALS diagnosis, there are numerous modifications to consider e.g. blocking inside the walls for grab bars and folding shower seats, additional support…[Read more]

Dave-We acquired a LiftSeat from a friend whose husband had ALS. Here is a link to the item: https://liftseat.shop/products/liftseat-independence-ii-toilet-lift  This lift runs about $1400.  My husband can still stand up from seated position, but getting off the toilet is a challenge from time to time. The LiftSeat can be outfitted with a bidet, a…[Read more]

Dagmar—is the Original Strength program you follow the work of Anderson and Neupert? I’ve seen a book and videos out there on the internet.

Question for Anne: What Classical Stretch program do you use? My husband’s onset was upper limbs and he’s been having some lower limb issues for a while. I’m curious to find out if what you are doing would be a beneficial add-on to my husband’s self-care routine. Thank you for sharing your story.

We had vax #2 on Friday. Sore arms and feeling a little tired and relieved. Get your vax-it’s better than being dead.

And to you Kathy Stitz and Dagmar and all of you – dealing with ALS and its challenges are no small task for pALS or their caregivers. Blessings.

Both my husband (a pALS) and I (caregiver) get #2 Pfizer April 9. We’ve alerted our neighbors in case we need anything, but have basic provisions ready. At the worst it’s 24-48 hours of discomfort and we can skip a shower or two. Getting vaxxed means no interruption  in our participation in the Healey Platform clinical trial and Radicava infu…[Read more]

Absolutely the right decision for me, my pALS husband and our daughter who we’ve only seen twice(she lives out of state) since his diagnosis in Jan. We’re also encouraging our extended family and friends to get vaccinated as they are important hands-on support for both of us. ALS can be isolating enough and then COVID made it that much more so.…[Read more]

I found the article regarding OTC pain relievers to be terribly misleading. And the worst part was that the last paragraph was very telling and revealed the truth—if the reader got to the last paragraph. Maybe authors should have started with the last paragraph first.  I’m really disappointed in ALS News editorial staff for allowing that arti…[Read more]

My husband diagnosed Jan 2020 at age 61, on Riluzole and started Radicava Mar 2020. His onset was upper limb. It’s hard to know if progression has slowed because there is no “control” for my husband. I administer infusions at home and deaccess port. Nurse comes 2x in the 10 day cycle to access port.

On a related topic we know that ALS manifests…[Read more]