Mary Jo Peterson

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.

My AFO was carbon fiber and I loved it!

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.

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…[Read more]

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.

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…[Read more]

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…[Read more]

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.