I never managed to put on weight in my life before ALS. I envy my overweight friends. I tell them to keep their weight as you never know what will happen.

A not real friend told me about Dr. Gundry’s diet, to help with my ALS.

I told her I didn’t eat food anymore.

The not real friend came to visit me a few days later, the first and last time.

She asked if I was losing weight. I told her my weight was stable.

She said my color was good. I didn’t ask her what that had to do with ALS. She was… Read more

My head started drooping three weeks ago.

I type at my computer keyboard as my head hangs forward. Need to use my hands to hold my head up. I prefer to type with two hands (two fingers now) otherwise one hand could hold my head while I type with the other.

I sit at my computer in an office chair with armrests. I have a body pillow I wrap… Read more

A cardiologist at the Mayo Clinic in Rochester, MN told me my left foot was cold because the nerves that control the muscles that are around the blood vessels don’t work properly. It is down to the microscopic nerves and muscles around blood vessels. Nothing to do with major muscle movement.

Of course, raising my foot above my heart makes… Read more

Today a lady I had replied to a comment she made was messaging me all day. 50 years old, she stated she had pins and needles pain, atrophy of her previous bodybuilding body, a major weight loss, fatigue. Very fast progression over four months. She still didn’t have a diagnosis, dismissed by doctor after doctor. Little family support. She… Read more

I got a GJ-tube in December 2020. The formula I was sent home with was not right for me. Once I started with Kate Farms Peptide 1.5 formula, I started feeling stronger, my reason for getting a feeding tube. I was going downhill, and every time I had a meal that I could swallow, I felt stronger the next day.

I can still talk, chew, and… Read more

My taste buds are whacko too. I don’t like coffee after being a 6 cup a day person. Canned chicken soup is awful. Homemade soup is better. Told my husband how to make pea soup, and it was good I had it for breakfast.

I have had trouble with nausea all my life, but more so with my ALS.

I tried Riluzole for a month or so. Too much nausea, so I quit.

With my nausea, taking pills doesn’t sound too good at times. I take what I need to take; nothing related to ALS.

Suzanne

My Mayo Clinic neurologist was wonderful when she told me my diagnosis: “I am so sorry to tell you this. I think you know what I am going to say.” All of the doctors were wonderful, when I was diagnosed. The clinic is 300 miles away from our house.

I saw a wonderful ALS neurologist, located 60 miles from my house, a month ago. After… Read more

Hello all,

I had a period over the first two months thinking my ALS diagnosis MIGHT be wrong. Not like my sister’s symptoms at all.

I had four years of preparation with knowledge about ALS. My sister’s ALS began in April 2015, diagnosed in 2016, and she died three years ago in in November 2017.

We did not know it was a genetic, C9orf72,… Read more

I told family and friends a month after diagnosis. Notified far off friends and family at Facebook. All are supportive, call me instead of me calling them. All ask what they can do for me. I have never had such a great outpouring of support!

My idea.

To do as Danielle suggested to get pALS to write about day to day life:

Create a page, like an interactive blog, with a link near each member’s forum photograph/name, where all can read what the pALS has written. It would be up to each pALS to create content, all could reply and interact when desired.

Both. My husband is caring for most of what I used to do for the past 30 years.

Big flower beds fill the front yard for me to enjoy.

I was exhausted caring for gardens and their output every summer. Now that I cannot, this summer and last summer have been a relief for me. I can simply enjoy.

Hello Dagmar,

I feel very energetic on sunny warm days; most of those days at least. We have air conditioned rooms for a retreat.

Lockdown began shortly after my ALS diagnosis. Our typical day has not changed greatly as we live a rural area, on a dusty road, and we don’t travel if we don’t have to. I do have an a 79-year old friend who lives… Read more

What medications do you take, if any?

I quit taking riluzole after one month as it nauseated me all day.

I was diagnosed with ALS in February 2020. I am positive for the C9orf72 gene repeat sequences. My sister died in 2017 from ALS. We thought her ALS was sporadic. My brother and I thought we were lucky. My brother died in February 2019 with symptoms that fit ALS. I realized that after he died. He only had a local doctor who never diagnosed… Read more

We live in the country, 20 miles from each of two towns. Never have gone to an exercise gym. I used to do yard and garden work outside to stay in shape in the summer. In the winter, it was snow shoveling. Now I can do neither easily. Since my diagnosis was in February 2020, with symptoms from February 2019, I have done all activities I can do… Read more

I do stretching daily, trying to get to where I used to go. I got out of the habit a year ago when ALS symptoms started with cramping all over while trying to stretch. My left leg (just above my knee, I just noticed) and all below my knee is atrophied and my foot does not move at all, and the blood vessels don’t work either,… Read more

I have lost five pounds, but that puts me at my lifelong weight. I eat what I want to with no changes in chewing and swallowing, but my appetite is reduced. I was just over my old weight from lack of activities I did up to two years ago such as gardening, hauling water buckets, pushing a wheelbarrow in the summer, and shoveling snow in the… Read more