Suzanne Akerman
Forum Replies Created
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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.
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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 talker.
She didn’t let me get a word in. She talked about her weight, and her prediabetes.
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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 front of me, tucking the ends along the armests. I rest my elbows on the pillow sides, and push with my hands in the front to force my back and head to lean back.
I sit in my bed with a Reading Pillow, and my bed pillows, and slouch a bit to lean my head back while I stream shows before I sleep.
Any number of pillows to raise my arms up while seated, to lean back when I ride in the car.
I bought the Headmaster Collar from Amazon, delivered five days ago. I have added padding at the chin and collarbones. It hurts me as is. I am thin, no fat padding on my bones, and I don’t know if fat would help. I can wear the collar padded for 15 minutes before the pain begins. I tried walking with the Headmaster Collar on with my rollator. Bad idea. Unnatural position to hold my rollator handles. Cannot talk with that collar on.
Inflatable neck collars might work. I don’t like things around my neck, so no use to me.
Power wheelchair in the works. Eye Gaze tablet in the works.
Best of Luck to you!
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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 blood redness of my foot and minor swelling go down. I am still mobile with my AFOs. My feet are on the floor most of the day. The cardiologist said to wear compression socks, so I do on my poor left foot.
My husband suggested I get electric heated socks. I thought no way. But I did.
All heated socks I tried had tight tops. We cut the socks off just above the battery cord. I wear leg warmers, so they cover the cut socks.
Four levels of heat in the socks, controlled with a remote I carry in my cell phone pocket.
The cardiologist also told me to keep my cell phone on me at all times. We have wifi calling, so my cell phone works anywhere in our house.
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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 frantic. She was sure she has ALS. I told her to contact her local ALSA, and that I found my local chapter helpful.
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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. And I can walk with assistance, and climb stairs slowly.
I got the feeding tube as my entire day was spent trying to eat food that would not choke me, swallowing water to clear my throat until I felt overloaded with water. I got a GJ-tube as my stomach is slow, and I have reflux. I use the jejunum tube for all feedings.
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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.
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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
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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 misdiagnosis by a neurosurgeon in the area, I was skeptical. She was wonderful, I must say again.
Got a direct phone number for her RN assistant. I can call her any time and ask anything. Going to their ALS clinic next month. The neurologist explained how their ALS clinic works. Good to have them in my corner.
I was an RN, and know how to get doctors to listen, if I know what I want to say. Nothing is off limits.
Suzanne
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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. Seems we three kids all got it, our brother too. I was diagnosed in February 2020, after a year of misdiagnoses. My progression seems slow, although it has only been nine months since diagnosis.
I am lucky that this site and others exist. Most did not when my sister had ALS.
I am a Christian, my faith is strong, and due to a life event when I was young, I have no fear of the future.
My friends have reached out to me to offer help. Fatigue is my biggest downer. My family understands, and is helpful.
I am lucky. My husband and I have often said all of our lives, that we don’t know what tomorrow will bring. Live for today. Life is life. Nothing else like it.
Suzanne (AKA Zenna )
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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!
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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.
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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.
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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 town, and she doesn’t want to visit during the lockdown. I miss seeing her.
No projects by my hands yet, but I have many waiting. My husband has to do the gardening. I will have to crawl over uneven soil to be of any help.
When this lockdown is over I will make a visit date with my 79-year-old friend. If not sooner.
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What medications do you take, if any?
I quit taking riluzole after one month as it nauseated me all day.
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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 him beyond Parkinson’s, although he had no tremors, no rigidity, no stooping, no shuffling gait, increasing difficulty swallowing food, a long-time quiet voice, and tripped when walking with falling.
Between the three of us we have five children. The daughter of my sister wants to be tested for a genetic ALS risk.
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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 at home. So, no real changes needed to be active at home.
I have many exercise instructions to do from three PT visits. I do use my rowing machine in the morning, before I put my AFOs on, for a minute or more, depending on how my legs feel. I have fibromyalgia, so I wait until later morning before taking my AFOs off and doing stretching and core strengthening on my bedroom floor. My husband saw me on the floor last week, and asked how I was going to get up. I can get up. Yeah.
My aqua exercise classes run during the school year. Now with the COVID-19 deal, there are no classes. I do have to drive 25 miles to the school where the pool is. An automatic door from the outside, and none on the door to the office where I have to sign in. Then I have to use a rolling walker to get to the pool area, over 200 yards away. One more plain door to open to the locker room. Nice to take a break from that work.
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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, meaning daily compression socks. I have foot drop in both feet, the right foot from a 40-year-old inversion ankle injury. I now have a rowing machine to use while I can.
Can an ALS person train the brain to balance on the affected foot, like my very first PT told me? I have no strength to stand and balance only on my left leg. I do move the foot with my hands for ROM.
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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 winter. I have lost muscle mass in the one leg that is affected by my ALS that has had symptoms for one year, the time I was on the merry go round of wrong diagnoses . I was diagnosed with ALS one month ago.