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Patty

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@patty

Does Medicare provide anything for ALS patients besides normal medical services. Is there a plan recommended with good coverage? View
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    Patty replied to the topic Relyvrio in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 months, 3 weeks ago

    Hi. Thank you to everyone for replying to my question. I receved my Relyvrio yesterday and am waiting to start after the weekend because I was not sure of side effects. I took Riluzole for 2 months but stopped because I started  having festiculations jumping all over my body plus fatique and knee pain. I startedRadicava ORS . My balance got…[Read more]

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

    Thank you for replying.

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    Patty started the topic Relyvrio in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 months, 4 weeks ago

    Has anyone started taking Relyvrio? Any side effects?

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    Patty replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 3 months, 2 weeks ago

    Please answer a few Questions concerning having physical therapy: Would you get a prescription from primary care doctor or from a neurologist in order to obtain physical therapy? Do you go to an ALS trained therapist or do you think that all therapists would be able to treat ALS patients? How about if ALS clinic does not recommend physical…[Read more]

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    Patty replied to the topic Would you seek out Albrioza treatment? in the forum Research Topics 3 months, 2 weeks ago

    Has anyone started taking Albrioza? I would like to hear how it affected you and also about the side effects. Thx.

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    Patty posted an update 4 months ago

    Does Medicare provide anything for ALS patients besides normal medical services. Is there a plan recommended with good coverage?

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    Patty replied to the topic Ankle-Foot Orthosis (AFOs): Your Questions, Tips and Shared Resources in the forum Living With ALS 4 months, 1 week ago

    I am considering an afo due to foot drop. I walk better barefoot than withshoes  and a brace to hold my foot up attached to shoe laces of tennis shoe. Its more difficult to get standing from sitting on a chair with the shoe . With afo how difficult to get from sitting on a commode to standing?

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    Patty replied to the topic How Do you Decide What Medical Interventions are Acceptable? in the forum Living With ALS 4 months, 1 week ago

    Susan, i am happy to read about your experience with your meds. I was diagnosed feb. 28. But had symptoms prior. I took riluzole for a few months and experienced twitching all over my body, pain in my ankle, that which I hadn’t experienced before.. Also fatigue. I was put on Radicava ORS. I took it for 3 months. After the first week my balance g…[Read more]

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    Patty replied to the topic Swallowing your pride and using a walker/rollator in the forum Mobility Aides, Assistive Technology and Medical Equipment 4 months, 2 weeks ago

    Thanks for your responses to my question. Your answers have helped. I was using a cane and after a couple falls, I have given in to the rollator.I have drop foot on left and I have had a few falls; always attributing them to: my shoe got caught on the rug, or my shoe got stuck at the bottom of the stove as I was trying to turn, or my barefoot got…[Read more]

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    Patty started the topic Swallowing your pride and using a walker/rollator in the forum Mobility Aides, Assistive Technology and Medical Equipment 6 months, 2 weeks ago

    When did you know when  to “give in” and start using a rollator or walker?

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    Patty replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 8 months, 3 weeks ago

    Physical therapist did suggest doing exercises on my own, ie. walking, recumbent bicycling, stretching.

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    Patty replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 8 months, 3 weeks ago

    No. I inquired about P.T. At the ALS clinic at the Cleve. Clinic.  The physical therapist and the dr. There did not recommend it. The physical therapist stated muscles won’t be built up, all therapists are not familiar with als therapy, and if the muscles are overworked, they will break down more.

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    Patty became a registered member 1 year ago

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      Amanda replied 1 year ago

      Hello Patty,
      Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!

      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 h…[Read more]

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 1 year ago

      Hello Patty,

      Welcome to the forum! I am one of the forum moderators and a person 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 discussions by typing a…[Read more]

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