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Suzanne Akerman

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@zeeweeaye

@dagmar-munn: I am using my cell phone to read posts. The Accept cookies keeps popping up even though I have clicked on it five times. Using a Galaxy Android phone. View
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  • Profile picture of Suzanne Akerman

    Suzanne Akerman replied to the topic When friends know how to "cure" ALS in the forum Living With ALS 1 year, 2 months ago

    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.

  • Profile picture of Suzanne Akerman

    Suzanne Akerman replied to the topic When friends know how to "cure" ALS in the forum Living With ALS 1 year, 2 months ago

    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]

  • Profile picture of Suzanne Akerman

    Suzanne Akerman replied to the topic Neck drop in the forum A​ ​Forum​ ​for​ ​ALS ​Caregivers​ 1 year, 2 months ago

    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]

  • Profile picture of Suzanne Akerman

    Suzanne Akerman replied to the topic cold and swollen feet in the forum Living With ALS 1 year, 3 months ago

    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]

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    Suzanne Akerman changed their profile picture 1 year, 3 months ago

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    Suzanne Akerman posted an update 1 year, 4 months ago

    @dagmar-munn: I am using my cell phone to read posts. The Accept cookies keeps popping up even though I have clicked on it five times. Using a Galaxy Android phone.

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 1 year, 4 months ago

      Hi Suzanne, I asked our website tech person and he said: this may be an issue with her phone not accepting cookies. Please ask her to disable any cookie blocks she may be using.
      Can you do this Suzanne? I hope it helps.

  • Profile picture of Suzanne Akerman

    Suzanne Akerman replied to the topic Confused about progression of symptoms in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 5 months ago

    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]

  • Profile picture of Suzanne Akerman

    Suzanne Akerman posted a new activity comment 1 year, 5 months ago

    I got my ALS diagnosis at the Mayo Clinic a year ago. C9orf72 repeats ALS.
    The doctors turned off the room lights, and used flashlights to skim light over my thighs, legs, arms, face, and tongue. They saw the twitching everywhere. A neurosurgeon I saw before the Mayo visit did not comment on my complaint of muscle twitches. So, you need to be firm…[Read more]

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      David Crellin replied 1 year, 5 months ago

      Yep, it took a year before diagnosis. As I used to cycle, kayak and run huge distances, I was used to muscles twitching. But the fasciculations with ALS are of a different order of magnitude and very obvious. I had MRI, CAT scan, EMC, and other tests before getting the news I didn’t want: as a teenager, I nursed my Mum through her five year…[Read more]

  • Profile picture of Suzanne Akerman

    Suzanne Akerman replied to the topic Tips for adjusting to living with a PEG (feeding tube) in the forum Living With ALS 1 year, 5 months ago

    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]

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    Suzanne Akerman replied to the topic Taste buds are off…losing my appetite! in the forum Research Topics 1 year, 6 months ago

    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.

  • Profile picture of Suzanne Akerman

    Suzanne Akerman replied to the topic Rilozole experience? in the forum A​ ​Forum​ ​for​ ​ALS ​Caregivers​ 1 year, 7 months ago

    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

  • Profile picture of Suzanne Akerman

    Suzanne Akerman replied to the topic Professionals and Empathy in the forum Living With ALS 1 year, 7 months ago

    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]

  • Profile picture of Suzanne Akerman

    Suzanne Akerman replied to the topic Coming to terms with your diagnosis in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 7 months ago

    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]

  • Profile picture of Suzanne Akerman

    Suzanne Akerman posted an update 1 year, 9 months ago

    The AMX0035 news led to three different non-ALS friends telling ME about it. I wonder how the prescription drug sodium phenylbutyrate and the OTC drug TUDCA have to be combined and sold for ALS use. Can’t we just take the two drugs?

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 1 year, 9 months ago

      I know that might be a first reaction for many pALS. But in several webinars, I’ve heard that question answered with: “Besides the two drugs, the base formula that is used to deliver them is also a factor. What makes up this base has not yet been revealed by the company.”

  • Profile picture of Suzanne Akerman

    Suzanne Akerman replied to the topic Perceptions of ALS in the forum ALS ​and​ ​Relationships 1 year, 11 months ago

    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!

    • Profile picture of Amanda
      Amanda replied 1 year, 11 months ago

      Suzanne, that is wonderful that you have such a wonderful support system!

  • Profile picture of Suzanne Akerman

    Suzanne Akerman replied to the topic Do you have any feedback about ways we might be able to improve our forums? in the forum Using our Forums 1 year, 11 months ago

    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.

  • Profile picture of Suzanne Akerman

    Suzanne Akerman replied to the topic Round-table Check-in: Join Us for a Short Chat in the forum Living With ALS 1 year, 11 months ago

    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.

  • Profile picture of Suzanne Akerman

    Suzanne Akerman replied to the topic Round-table Check-in: Join Us for a Short Chat in the forum Living With ALS 1 year, 11 months ago

    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]

  • Profile picture of Suzanne Akerman

    Suzanne Akerman replied to the topic Constant nausea, in the forum Living With ALS 2 years ago

    What medications do you take, if any?

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

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    Suzanne Akerman's profile was updated 2 years ago

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