NANDHINI

Here are several helpful blog posts I found that give excellent advice to find adaptive clothing:

Adaptive Fashion, Tips, Tricks and Hacks

Where to find AFO-friendly shoes and adaptive clothing

I found that the shoe brand Hotter Shoes were good with my AFOs. I needed a shoe that was sturdy, flat, and yet had “some” style. Hotter makes shoes in a variety of widths and lengths as well. I bought and use the style “Shake” with my AFOs.

https://www.hotter.com/us/en

I’ve been taking Riluzole (twice a day) for 11 years now – – with no side effects at all.

I’m careful to take the first dose in the morning with a few sips of juice (or my fruit smoothie). Then wait a few minutes before consuming the rest of my meal. Same thing at dinnertime. Through experimenting, I found taking it on an empty stomach or with…[Read more]

Kathy, kudos for your courage in sharing your feelings of loneliness. Many of our friends don’t understand the needs of having to live with a chronic illness. They have been “trained” to think illnesses go away, and we get better. They don’t understand the long-haul nature of ALS.

I’m glad you are a member of our forum. You have contributed much…[Read more]

Mike, I don’t recall ever hearing Dr. Bedlack say the reversals he was studying were all on plant-based diets. Nor, do I remember them mentioning it when they had interviews. Perhaps you were confused… because, he did say a common supplement they were taking was Theracumin.

Terry Wahl stopped her MS symptoms via her drastic change in diet.…[Read more]

80% of falls happen in the bathroom. Like many people my age, I’d awake in the middle of the night to use the toilet. But with ALS it became a wobbly walk that was treacherous even with our strategically placed night lights. Here’s how I avoid a nighttime fall and, get 8 hours of uninterrupted sleep.

I drink adequate amounts of liquids th…[Read more]

Regardless of opinions of how ALSA operates, the flow chart that Mark shared is I believe something helpful for non-ALS specialists/GPNs as well as patients. This chart lays out symptom identification in an easy-to-understand format.

Thank you for sharing this with us Mark.

Regardless of opinions of how ALSA operates, the flow chart that Mark shared is I believe something helpful for non-ALS specialists/GPNs as well as patients. This chart lays out symptom identification in an easy-to-understand format.

Thank you for sharing this with us Mark.

Scotty, your brother-in-law is lucky to have you. Your kindness and compassion for him shine through.

You didn’t mention how long he has had ALS, but I suspect by your comments, not very long – – in that he has not yet made any connections within the ALS community.

All of us pALS here in the forum experience the same fears of our future (and…[Read more]

A member asked:

How do ALS patients deal with constipation? I’ve had a feeding tube for six months and began having trouble with constipation. I do not take anything orally and make sure that  I stay hydrated using the feeding tube. Are there any suggestions out there?

I always enjoy my visits to the ALS Clinic (and have written much about them in my column and blog).

During the first few years of my ALS, I was going every three months. But as my symptoms slowed and I was self-managing OK, they dropped to every 4 months. Now, 11 yrs. later, my neurologist has me scheduled at 6 months – – with the option to call…[Read more]

I was following a healthy vegetarian diet (allowing eggs & milk) for 10 years prior to my diagnosis. My neurologist told me I needed to eat more protein – – and I wasn’t interested in consuming a ton more “plant protein” (soy, peas, etc) – – so, I went right back to including chicken, fish, and beef in my diet.

I feel fine. Having been eating…[Read more]