Gail Garfield

Elaine, I would think that while wearing an AFO on each foot you would be safer to also walk with a walker with wheels. It may seem cumbersome at first, but it does provide stability. AFOs after all, immobilize your ankles, which are important to maintaining balance.

Maybe with one AFO you can walk independently… but with 2, avoid falling by…[Read more]

Hi Patty, I also walk better barefoot (better sensing of balance from skin’s direct contact with the floor), and, I walk better with tennis shoes on around the house than with my AFOs. But I do wear my AFOs going out if I need to avoid foot drag or if need to walk longer distances. (in my case I also use a walker with wheels)

The restriction at…[Read more]

Wait! I’ve found a few wheelchair wheel cleaners!

But they seem so cumbersome. Does anyone know of others?

Katie, I don’t know the exact cause of this, but I think mine is related to my hyper-reflexes). You know, like when the doctor taps my knee and my leg does a full-on football touchdown kick!

I don’t think anyone at your clinic will mention it… unless you bring it up. It’s not a big deal to other people, but I know having a sudden onset of…[Read more]

Len Jax, I share that “jaw clench” – – isn’t it awful?

Great suggestion about the corn bag!

I’ve continued to have preventive care – – for the past 12 yrs of my ALS – – although the list of my screenings and care has been modified. Such as:

Yes:
Visiting the dentist – mouth and tooth health is essential. Dental chairs are accommodating as well as the treatment received.
Cholesterol checks – it’s included in the annual lab orders from…[Read more]

Kim,
Full-spectrum lights have been used for about 20 yrs now in the prevention of and treatment of Seasonal Affective Disorder (commonly referred to as SAD). These special lights have the full wavelengths/spectrum of light (similar to the sun) – – essential for plant, animal, and human growth. You are correct about circadian rhythms…people who…[Read more]

I had my 4th vaccine last week. Had to have Pfizer as it was the only one our drugstore was offering. Previously, I’ve had only Moderna (with lots of side effects for 2 days) so I was a little fearful of switching to Pfizer. I worried, “What would happen now?” But, poof, no problem. And even a barely sore arm! I figure either Pfizer is really the…[Read more]

This list doesn’t necessarily represent my personal views and opinions. But to add to the discussion, these are the “cons” or reasons I’ve had other pALS share with me as to why they don’t want to participate in ALS research:

– the research center is too far away from where I live.
– I don’t want to experience potential side effects.
– I don’t…[Read more]

This is exciting Hawkin… I know your project and article will be of interest to our forum members and I hope many will respond to your request.

Eric and John, This website (Your ALS Guide) has excellent and helpful information for newly diagnosed ALS patients: https://www.youralsguide.com/newly-diagnosed.html

And this page covers how to make the medical decisions as to feeding tubes, etc. : https://www.youralsguide.com/als-medical-decisions-newly.html

Kathleen, your progression sure was fast. I’m curious… during that first year prior to having to use a power chair, did you do any type of home exercises to help keep your legs strong enough to wear & walk in the AFOs? How about gentle overall body exercise/movements?