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Susan

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@malonekelley

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    Susan replied to the topic Questions about transferring a patient – – is Hoyer lift the only option? in the forum Living With ALS 1 month ago

    I have ALS, 2 years now, but many signs and falls later, I was diagnosed in December 2021, but actually sick with it nearly all of 2021.
    My husband is my caregiver, he has to watch me decline a bit every week and he usually cries along with me. We got a loaner lift from out ALS loaner closet, also a power chair. The one and only time we tried the…[Read more]

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    Susan replied to the topic Relyvrio in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 month, 1 week ago

    Absolutely, I got the 15k grand, but I have no co,pay on any of the 3 main ALS medications,
    Radicava ORS, RELYVRIO and Riluzole. I have Aetna Medicare and they are great 👍 non of the medications are slowing my progression, diagnosed with ALS in December 2021. I have lost all function except arms head and neck, right arm and hand are starting to…[Read more]

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    Susan replied to the topic Relyvrio in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 month, 1 week ago

    Hi, diagnosed in December 2021. Started Radicava mid April 2022 via iv, then when they came out with the oral solution I switched, still,progressed quickly, several broken bones from falling, then in January 2023 started Relyvrio, very nasty taste, dealt with using Listerine strips on the tongue. It’s been 10 weeks and I am still progressing, a…[Read more]

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    Susan posted a new activity comment 1 month, 3 weeks ago

    I do believe miracles happen all the time, wether we are chosen to receive is up to God, and our FAITH!

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    • Profile picture of Esmeralda Trinidad
      Esmeralda Trinidad replied 1 month, 3 weeks ago

      I’m sure you and everyone here does

  • Profile picture of Susan

    Susan replied to the topic Relyvrio in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 month, 3 weeks ago

    So sorry you are not able to take it. I pray for you a miracle  healing, and I pray for myself too..

  • Profile picture of Susan

    Susan replied to the topic Relyvrio in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 months, 3 weeks ago

    Hi, I am Susan, I have been on Radicava for 8 months, I started RELYVRIO Dec 31/2022. So just a few days ago, happy to report zero side effects, it is extremely bitter tasting, but it’s only 8 oz, my wonderful husband puts it in a large glass, so it seems like less, I chug it down, don’t hold your nose, it makes it worse! Then my wonderful hus…[Read more]

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    Susan replied to the topic Is anyone getting the 4th shot/booster? in the forum Coronavirus (COVID-19) and ALS 4 months, 2 weeks ago

    Great! Smart! I too have had 4 vaccinations and my flu shot, no adverse reactions and since I have ALS I feel a bit safer this winter from Covid and the flu, my Faith keeps me strong too! GOD BLESS 🙏

  • Profile picture of Susan

    Susan replied to the topic Is anyone getting the 4th shot/booster? in the forum Coronavirus (COVID-19) and ALS 4 months, 2 weeks ago

    Well als is depressing enough, right? But add to that seasonal depression and things can seem very bleak! I was diagnosed last holiday season, depressing! What I am trying this season, because I live in a climate with snowy days and gray skies, and cold! I went on Amazon and found a light therapy pole light that simulates sunshine, no burning rays…[Read more]

  • Profile picture of Susan

    Susan replied to the topic Is anyone getting the 4th shot/booster? in the forum Coronavirus (COVID-19) and ALS 4 months, 3 weeks ago

    I got the 4th booster, all Pfizer, no reaction to any of the vaccinations, not even a sore arm, people are under the impression that the virus is (just the flu now) and that is not true, the virus is still alive, and can be debilitating to some who get sick, others, like me will be symptom free. My own Daughter refuses to believe there even is a…[Read more]

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    Susan replied to the topic How Do you Decide What Medical Interventions are Acceptable? in the forum Living With ALS 4 months, 3 weeks ago

    I have been sick for 2 years, diagnosed last Christmas, what a shock to say the least, very healthy happy 64 year old female, 9 siblings, ancestry back 5 generations, no ALS anywhere but me. At first it didn’t sink in really, of course we cried, but had no idea what my neuromuscular   .specialist had just told us.
    ‘I was already using a Walk…[Read more]

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    Susan and Profile picture of NJGuyNJGuy are now friends 5 months, 2 weeks ago

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    Susan and Profile picture of SILVIA ARGSILVIA ARG are now friends 8 months, 2 weeks ago

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    Susan and Profile picture of Azizullah KhattakAzizullah Khattak are now friends 8 months, 2 weeks ago

  • Profile picture of Susan

    Susan replied to the topic How Do You “Take a Break” From Caregiving? in the forum A​ ​Forum​ ​for​ ​ALS ​Caregivers​ 10 months, 2 weeks ago

    I wish my partner, John,  of 11 years could have a break! I have lost the use of my legs, I fall a lot, most recent, broken sternum. I am in a wheelchair but fell during a kitchen sink mis hap. He is 24/7 on duty, doesn’t sleep well, or eat, he’s too busy caring for me. I have a large family, no help! My older Sister lives directly across the stre…[Read more]

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    Susan and Profile picture of Judy WegerJudy Weger are now friends 10 months, 3 weeks ago

  • Profile picture of Susan

    Susan replied to the topic How Has Your ALS Changed How You Exercise? in the forum Living With ALS 10 months, 4 weeks ago

    I was a gym regular, toned and strong, then ALS came along. Now I do physical therapy to keep what strength I still have, very little. In a wheelchair no for 4 months or so, but I do the PT to keep my upper body strength, and I always feel tired and happy after I work out 💪

  • Profile picture of Susan

    Susan posted a new activity comment 10 months, 4 weeks ago

    Hi 👋

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  • Profile picture of Susan

    Susan posted a new activity comment 10 months, 4 weeks ago

    Hello 👋

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  • Profile picture of Susan

    Susan and Profile picture of DuaneDuane are now friends 10 months, 4 weeks ago

    • Profile picture of Susan
      Susan replied 10 months, 4 weeks ago

      Hello 👋

  • Profile picture of Susan

    Susan and Profile picture of Jean-Pierre Le RouzicJean-Pierre Le Rouzic are now friends 10 months, 4 weeks ago

    • Profile picture of Susan
      Susan replied 10 months, 4 weeks ago

      Hi 👋

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