Suzanne Akerman

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 a…[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 in…[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 the…[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 seemed…[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 swallow.…[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 my…[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, ALS.…[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 in…[Read more]

What medications do you take, if any?

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