Forum Replies Created

  • mary-jo-peterson

    Member
    July 5, 2022 at 2:18 pm in reply to: Have you had physical therapy sessions for your ALS?

    I’ve had a couple in home PT sessions to demonstrate for my caregivers how to do range of motion exercises. I get them done every day. It helps prevent stiffness.

  • mary-jo-peterson

    Member
    June 21, 2022 at 3:59 pm in reply to: Carbon fiber vs plastic AFO

    My AFO was carbon fiber and I loved it!

  • mary-jo-peterson

    Member
    May 24, 2022 at 4:20 pm in reply to: What do you think of this new form of Radicava?

    What Mary C said. I’ve been infusing for almost 4 years. The oral option will be great! I, too am concerned about Medicare/Insurance coverage.

  • mary-jo-peterson

    Member
    July 14, 2021 at 9:51 am in reply to: Help with difficult transfers

    Nina, Sorry for the late post on this subject. I too wanted to avoid using equipment as long as possible. We used a sit-to-stand lift for about a year until my arms could no longer hold me up. We transitioned to the hoyer a few months ago, with great hesitation, but in the end, it works really well for both me and my caregivers. It’s always better to be safe than sorry.

  • mary-jo-peterson

    Member
    March 17, 2020 at 3:05 pm in reply to: Home renovations and ALS

    We turned my husband’s office on the main floor into an accessible bathroom. Roll in shower, Toto toilet/bidet. Roll up sink. We had help designing it from our niece who happens to be an architect.  Also got advice from my ALS clinic OT/PT who made a home visit. We’re turning our front livingroom into our master bedroom. Adding french doors for privacy.

  • mary-jo-peterson

    Member
    November 26, 2019 at 10:17 am in reply to: A Funny Thing Happened at My ALS Clinic

    At a recent ALS Clinic visit I referred to my very weak left leg as she. My Dr. smiled and said, “she?” He then went on to tell me about another female patient that referred to her weak limb as “he.” Puzzled, he asked her “why he?” Her response, “because just like my husband, it never does what I ask it to.” I laughed so hard and think about that comment every time I struggle to move.

  • mary-jo-peterson

    Member
    April 6, 2019 at 1:11 pm in reply to: 9 Things to Know About the ALS Drug Radicava

    I have been using Radicava since July 2018. I have an in-home nurse access my prt at the start of each round, and do the rest myself. It’s convenient for me, thankfully covered by my insurance, and makes me feel like I’m somewhat in control of my situation. My progression is slow and my Neurologist thinks it may be related to the Radicava. Who really knows for sure since each case is different?

  • mary-jo-peterson

    Member
    April 6, 2019 at 12:53 pm in reply to: ALS and compassionate allowance

    I applied in November 2018 and started receiving the benefit in February 2019. The only hold up was determining the start date of disability. Was it diagnosis date or date symptoms first appeared? The Soc Sec Admin gave me benefits retroactive to my first appt with a Neurologist.