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Suzanne Gallo

Home Members Suzanne Gallo
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@suzannegallo

60 year old man with ALS, dances at his daughters wedding, following LHI treatment, …… and hikes through Italy. I find it totally disgusting that ALS news today promoted the Lifestyle Healing Institute in Naples Florida. Does anyone else agree? I feel that I just can not trust ALS News Today. This is the second time I have picked up a pla […] View
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  • Profile picture of Suzanne Gallo

    Suzanne Gallo replied to the topic Relyvrio in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 weeks ago

    Relyvrio was exorbitantly expensive for us. Though my PALS is on Medicare, with AARP United Health Care supplemental, the copay was out of sight for us. Because we have savings, and make a small income each year from our financial status, we don’t qualify for any help. Our neurologist at Penn medicine ALS center of excellence, advised us against s…[Read more]

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    Suzanne Gallo replied to the topic Toferson in the forum Research Topics 1 month, 1 week ago

    Amanda

    i am so very very sorry that you have been diagnosed with ALS. Please know that I am extremely sad. I have been following your column sincd my husband was diagnosed about 3 years ago.
    my father passed from ALS 6 years ago. Not familiar, but super lousy, just the same.
    I suggest you contact Ron Hoffman, at CCALS.org. Please do this, to…[Read more]

    • Profile picture of Amanda
      Amanda replied 1 month, 1 week ago

      Hey Suzanne,
      I was going to email you today. I wanted you to hear the information from me. I will definitely reach out to CCALS. It’s very, very early for me. They were able to make a diagnosis much earlier than in many cases because I’ve been volunteering or the Pre-fALS study for a long time. I’m fully functioning right now and planning on…[Read more]

  • Profile picture of Suzanne Gallo

    Suzanne Gallo posted an update 2 months, 1 week ago

    60 year old man with ALS, dances at his daughters wedding, following LHI treatment, …… and hikes through Italy. I find it totally disgusting that ALS news today promoted the Lifestyle Healing Institute in Naples Florida. Does anyone else agree? I feel that I just can not trust ALS News Today. This is the second time I have picked up a planted pro…[Read more]

  • Profile picture of Suzanne Gallo

    Suzanne Gallo replied to the topic SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 4 months, 2 weeks ago

    Scotty

    yes definitely taking a lot of supplements makes my PALS feel terrible. Dull, tired, kind of sickish-blah.
    all the supplements are prescribed by a natural medicine PhD practitioner, with 40 years of practice,so it’s not like we are doing this on our own.
    it is definarely discouraging

  • Profile picture of Shannon Halstead

    Shannon Halstead and Profile picture of Suzanne GalloSuzanne Gallo are now friends 6 months, 2 weeks ago

  • Profile picture of Suzanne Gallo

    Suzanne Gallo replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 6 months, 3 weeks ago

    I take my PALS for PT 2-3 days per week, at NeuroFitness, a business specializing in movement disorders.
    He is in a power chair most of the time, so he gets very stiff.
    he enjoys the other patients at the PT business, so he gets a social visit as well.As long as we can keep up the trips, we will go- then transfer to home visits.
    as a full time…[Read more]

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    Suzanne Gallo changed their profile picture 10 months, 1 week ago

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    Suzanne Gallo replied to the topic Support Animals for ALS in the forum Living With ALS 1 year, 6 months ago

    I seriously can not imagine any animals to take care of. It’s all I can do to take care of my PALS. Sometimes we go to bed late. Sometimes we sleep late. We have had pets for 30 years of our married life: now we have just each other. This is enough. I cringe to think of letting out a dog early in the morning- just after I might have gotten back t…[Read more]

  • Profile picture of Suzanne Gallo

    Suzanne Gallo replied to the topic Member Check In in the forum Living With ALS 1 year, 7 months ago

    I am grateful that my PALS and I celebrated 32 years of marriage today, June 10. We took an overnight trip to Cape May, NJ. We stayed at the Chalfonte Hotel, the oldest, continuously operating hotel in Cape May- America’s first seaside resort. Our room was handicapped accessible. We brought along the Hawk electric wheelchair, and enjoyed w…[Read more]

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    Suzanne Gallo replied to the topic Genetic Mutation or Sporadic ALS in the forum Living With ALS 1 year, 9 months ago

    Still awaiting the genetic test results from my PALS Michael’s cheek swab. Michael’s Dad had Parkinson’s Disease, and his paternal grandmother is a mystery to us, though we have been told that she spent the last years of her life bed-bound. We assumed it was dementia- but we don’t know for sure. Estranged family relationships on both sides for him…[Read more]

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    Suzanne Gallo replied to the topic What's the latest news on AMX0035? in the forum Research Topics 1 year, 9 months ago

    My PALS neurologist at Penn ALS clinic gave him a script for Sodium Phenylbutyrate. It was over $1000 copay to fill at Walgreens. He has Medicare and AARP UH supplemental and AARP UH pharmacy benefits. I was advised to appeal our insurers decision not to cover Sodium Phenylbutyrate. Ask for a second opinion on the denial from a neurologist- making…[Read more]

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    Suzanne Gallo replied to the topic Do ALS clinical trials exclude too many pALS? in the forum Research Topics 1 year, 10 months ago

    Ragnar, oh my god, this post hit the nail on the head for my husband, my Pals- and I. He was diagnosed on January 11, 2021. Our first clinical ALS appt was on March 4, 2021, at U of Penn. One of my first questions for the neurologist at the ALS clinic was- what clinical trials can my PALS participate in. This is U of Penn, where HEALY platform…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn and Profile picture of Suzanne GalloSuzanne Gallo are now friends 2 years ago

  • Profile picture of Suzanne Gallo

    Suzanne Gallo changed their profile picture 2 years ago

  • Profile picture of Suzanne Gallo

    Suzanne Gallo changed their profile picture 2 years ago

  • Profile picture of Amanda

    Amanda and Profile picture of Suzanne GalloSuzanne Gallo are now friends 2 years ago

  • Profile picture of Suzanne Gallo

    Suzanne Gallo posted a new activity comment 2 years ago

    Hi Amanda
    Thanks for your warm welcome. My husband is in the process of diagnosis. My daughters and I noticed that he was walking funny late last spring. He was loosing strength, and was noticeably loosing muscle mass in his legs. With gentle persuasion, he contacted our family doc. He had a virtual appt, so no hands on exam, but he got a script…[Read more]

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    • Profile picture of Amanda
      Amanda replied 2 years ago

      Suzanne,

      My heart goes out to you. That is so much stress for one person to experience. I hope and pray that your husband’s ALS diagnoses does not come back positive. It is a long road hard road as you already know. It sounds like you are a pillar of strength although I’m sure you don’t always feel that way.

      I doubt you are losing time to get…[Read more]

  • Profile picture of Suzanne Gallo

    Suzanne Gallo replied to the topic Asking for Support in the forum Living With ALS 2 years ago

    Hi. I don’t have ALS, but my dad, at age 79 passed from this disease 4 years ago. I was one of his caretakers. I was with him when he died.
    Now, my husband, aged 67, has  ( I just can’t say it, because he doesn’t have the spoken diagnosis…but he has had every test to rule out not……) a motor neuron disease. I’m pretty sure he has it. I kn…[Read more]

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    Suzanne Gallo became a registered member 2 years ago

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 2 years ago

      Hello Suzanne,

      Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

      If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or…[Read more]

    • Profile picture of Amanda
      Amanda replied 2 years ago

      Hello Suzanne, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I l…[Read more]

    • Profile picture of Suzanne Gallo
      Suzanne Gallo replied 2 years ago

      Hi Amanda
      Thanks for your warm welcome. My husband is in the process of diagnosis. My daughters and I noticed that he was walking funny late last spring. He was loosing strength, and was noticeably loosing muscle mass in his legs. With gentle persuasion, he contacted our family doc. He had a virtual appt, so no hands on exam, but he got a script…[Read more]

      • Profile picture of Amanda
        Amanda replied 2 years ago

        Suzanne,

        My heart goes out to you. That is so much stress for one person to experience. I hope and pray that your husband’s ALS diagnoses does not come back positive. It is a long road hard road as you already know. It sounds like you are a pillar of strength although I’m sure you don’t always feel that way.

        I doubt you are losing time to get…[Read more]

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