MaryConnolly

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 helps…[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 p…[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 mobility…[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 for…[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 current…[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 wish…[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 having…[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 i…[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 and…[Read more]