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Mary Jo Peterson replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 7 months ago
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.
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Mary Jo Peterson replied to the topic Carbon fiber vs plastic AFO in the forum Mobility Aides, Assistive Technology and Medical Equipment 7 months, 2 weeks ago
My AFO was carbon fiber and I loved it!
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Mary Jo Peterson replied to the topic What do you think of this new form of Radicava? in the forum Research Topics 8 months, 2 weeks ago
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.
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Mary Jo Peterson replied to the topic Help with difficult transfers in the forum Living With ALS 1 year, 6 months ago
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]
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Mary Jo Peterson replied to the topic Home renovations and ALS in the forum Mobility Aides, Assistive Technology and Medical Equipment 2 years, 10 months ago
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.
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Mary Jo Peterson replied to the topic A Funny Thing Happened at My ALS Clinic in the forum A Funny Thing Happened at My ALS Clinic 3 years, 2 months ago
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]
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Amanda and
Mary Jo Peterson are now friends 3 years, 10 months ago
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Mary Jo Peterson replied to the topic 9 Things to Know About the ALS Drug Radicava in the forum ALS News 3 years, 10 months ago
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]
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Mary Jo Peterson replied to the topic ALS and compassionate allowance in the forum Living With ALS 3 years, 10 months ago
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.
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Dagmar Munn and
Mary Jo Peterson are now friends 3 years, 10 months ago
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Mary Jo Peterson became a registered member 3 years, 10 months ago
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Hi Mary Jo, my name is Michael Morale. I’m the Director of Multichannel Content for ALS News Today. I wanted to welcome you and thank you for joining our forum. We hope that you will take time to go through all of the open conversations that are actively in progress, and feel free to join in. We strive to bring you the information that you need t…[Read more]
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Hello Mary Jo, I’m Amanda, one of the co-moderators of the ALS forum. Please take a look at the topics and discussions. You are welcomed to post comments, respond to members, ask questions and provide information. We strive to make the ALS forum a place where pALS, caretakers, and the ALS community can learn and support one another. With our m…[Read more]
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Hello Mary Jo, my name is Dagmar. I’m one of the forum co-moderators and wanted to welcome you and thank you for joining our forum! We hope you will take the time to go through all the open conversations that are in progress and feel free to join in. If you have any questions or concerns or even suggestions, just let us know, and we will do our b…[Read more]
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