My husband Jay passed away April 2024 after living with ALS for 5 years–probably longer given the time to diagnose. He had genetic testing done at diagnosis and it revealed a clean slate with regard to known mutations for ALS–in particular the known familial mutations. I say known mutations because for 90% of pALS the genetic basis of their…

Read more

Amanda! Such great news and I’m thrilled for you! My husband, Jay, who participated in the Healey Platform trials, passed away April 2024. We both read your forum contributions. I hope and pray that this therapy continues to open new doors of healing for you–it can lay the groundwork for those who follow. Thank you for participating in a trial!

Only one side? That makes no sense medically or logically. Your EMG should be full and complete—that’s BOTH sides of your body—top to bottom and including front to back—yes your back where the 3 groups of paraspinal muscles (erector spinae) are. It’s important to have a baseline even if you are impaired more on one side than the other. Your…

Read more

If your neurologists says that you don’t fit the criteria for ALS because of the discrepancy between upper and lower motor neuron involvement and if your clinician is at the Mayo, then I’d like to direct you, and more specifically your care team, to this verbiage from the May Clinic website (link below) :

“…

Read more

Reading this makes me kinda crazy. Especially the notes which may not be thorough enough. If you can, write down your version of the sequence of events–that way you don’t have to remeber dates and events and doctor visits i.e. keep your own records and get the records from your neurologist–get everything including test results, images,…

Read more

You are not out of your mind. My husband presented with spinal stenosis and that is what the neurologist thought was causing his upper limb weakness—mostly right arm. My husband had the surgery May 2018 and function was improved the next day. After a year of intense physical therapy to increase strength in his arms we believe he came to a point…

Read more

As others note this is a difficult decision. Since more is known with genetic ALS it would follow that clinical trials, treatments and perhaps a cure would be more widespread and that the science is further along—gene therapy and genome research has been around a while and only limited in part, in my opinion, by the rarity of a disease and lack…

Read more

What a great idea! I’ve not seen anything like a split seat design. Thank you!

Here is the video of my husband on an accessible Mt Tamalpais trail in the aforementioned Whill chair. We traversed the first .12 mile of McKennan Gulch Trail which led to a stone bench overlooking Bolinas Lagoon, Marin County. The trail continues on for several miles, but we did not adventure that far as it becomes much steeper. Accessible… Read more

My husband uses a Whill mobility chair. The engineering on the front wheels is amazing and allows him to turn on a dime. He can navigate grass, curbs up to 2″, and outdoor trails if they are wide enough and not too bumpy. We took it on a designated accessible outdoor trail close to our home and it navigated the hard packed rocky terrain just… Read more

Fascinating articles. Although sample size is small it appears that acupuncture does not make the condition worse. Any stabilization and improved QoL seems worth the effort. Thanks for sharing. Will add this to list of questions for next appt with neurologist.

We continue preventative care via annual physicals, dental, vision and dermatology appts. Some of the bloodwork done during quarterly ALS clinic and clinical trial blood draws overlaps with bloodwork required for annual physicals. We also stay up to date on vaccinations (Covid, shingles, tetanus, whooping cough, etc.) Preventative care… Read more

A rollator is very helpful! Like many of you we have transitioned through a cane, walking sticks, a 3-wheel rollator and a 4-wheel rollator (we have two types). A few months ago we purchased a motorized WHILL chair which I highly recommend for longer treks–it can manage accessible trails and up to a 10degree grade. It also breaks down into 3… Read more

I don’t know how responsive your neurologist or care team is, but they should know about the falls. I hope your neurologist is a member of an ALS excellence care team. We are at UCSF in San Francisco, but I’ve found that our care is only as good as our advocacy. There are intermediate steps before a power chair IMO and we have several… Read more

Is this a Bridgestone or a Brookstone model. I googled Bridgestone and search results came up Brookstone. Do you have the model number?  Thanks!

 

Dustin–what is the make and model of your lightweight transfer chair that you use for travelling?

Dagmar—looking forward to the new thread on ‘how to maintain one’s voice’. Thank you in advance. Mary

We’ll be getting the next Covid booster next week. Have already received the flu vaccine. Here are two articles that address new Covid vaccines and timing issues related to getting Covid and flu vaccines. Dr. Baker is a good friend and well versed in the science. His credentials speak… Read more

There are several ‘power lift’ aids that my husband currently uses to get from sitting to standing in a variety of situations. For walking he uses a 4-wheeled rollator (Drive Nitro, foldable with seat) to assist walking short distances and he has a motorized WHILL chair for longer excursions. He does not use a power wheel chair.

Our… Read more

Here is the website for Team Gleason Assistance: https://teamgleason.org/need-assistance/  The website is very robust and I highly recommend signing up for their newsletter and taking a look around it. Steve Gleason has ALS and is vested in helping pALS and cALS and their families in tangible and meaningful ways.

Here is the website for Team Gleason Assistance: https://teamgleason.org/need-assistance/  The website is very robust and I highly recommend signing up for their newsletter and taking a look around it. Steve Gleason has ALS and is vested in helping pALS and cALS and their families in tangible and meaningful ways.… Read more

Hi all! You may want to check the Team Gleason website for financial assistance to purchase a tilting/rolling shower chair. I don’t have all the info handy right now, but will add another post with more detail. Thanks for your patience.

Agreed and preaching to the choir. All the more reason to stay involved on the advocacy front. Surely we caregivers have plenty to do and we know our pALS do as well. Do what you can, share what you know and keep writing your reps! Best to you all! Take good care.

OMG-this is all so timely! The SitnStand Portable Lift Chair sounds perfect for getting out to see friends without getting swallowed in their sofa. And from the video on the website we learned that it can raise a person up to a height of 8″, which is a lot! Now to check our adjustable bed to see if we can “uncouple” the 2 platforms. I just… Read more

John-You mentioned the mattress is “flexible to allow the bed to bend with the motorized platform.” Did you put this mattress on a hospital style bed (like a Rom Hil hospital bed frame) or did you purchase the Nectar adjustable base? And what size did you get for Julie? We currently have a King on an adjustable base and my husband is not… Read more

I joined the in-person caregiver group the week after my husband’s dX in Jan 2020—it was in the small town where I lived so super convenient! Then COVID hit and the group was switched to online Zoom which I think has worked well. We are still doing the Zoom call once a month and participants are from close-by surrounding counties and the group… Read more

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… 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,… 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… 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… 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,… 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… 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… 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… 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… Read more

Dagmar—-I would love to see photos of your shower set up. We are going to remodel our modest master bath to make it more accessible. In the Accessible Home book I’d seen some bathrooms with curbless roll-in shower, but only a few with curtains which I think are preferable to any type of doors. We are also considering the “wet room” style but… Read more