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Thread: New website for PMA sufferers

  1. #1
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    Lightbulb New website for PMA sufferers

    My name is Roy Wallace and my web name is w3junkie. I was diagnosed with non-specific MND in Oct. 2017. This was further refined to PMA (Progressive Muscular Atrophy) in Feb. 2018. Since then, I have spent many hours researching and documenting the ins and outs of this disease.

    The biggest problem for most MND patients is that there is no homogeneity to the disease and its many variants. I found that much of the information related primarily to ALS which although it has some correlation to PMA, there are as many differences as there are similarities.

    So far, the best resource that I have found is PatientsLikeMe. Even so, there is little that is specific to PMA and what there is seems dispersed throughout the site and therefore not easily accessible.

    As a result, I decided to start a dedicated site strictly for PMA patients and their carers: Providing Mutual Assistance to ALL PMA Sufferers
    This is designed to be a one-stop source of all things related to PMA including diagnosis, treatments, assistive devices, hints and tips for making life easier both for patients and carers and much more. Take a look for yourselves!

    I have also set up a Facebook page that all are welcome to join:
    PMA - Progressive Muscular Atrophy - Providing Mutual Assistance

    Of course, as you might expect, much of the information and resources is valuable for other MND sufferers as well. 😎

  2. #2
    Forum Member Lynne K's Avatar
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    Hi Roy, well done for your research, Facebook and the website that you said you have created. If my memory serves me well today PMA is a slower degeneration than ALS, lucky you. I'll look at your Facebook page later. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  3. #3
    Forum Member Barry52's Avatar
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    Hi Roy and welcome to the forum.

    We have a private group for people with PMA and PLS who are linked to a Facebook group. We have members mostly in the UK but also Europe and the US. We have a web chat every Thursday 8pm UK time and if you would like to join the group let me know.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  4. #4
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    Thanks Barry, I tried to PM you but was unable. I would very much like to join the group. I have been trying to get a web chat group going locally without much success!

  5. #5
    Forum Member Barry52's Avatar
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    Hi Roy,

    I’m sorry as my mailbox was full so I have had a clear out. If you would like to send me your email address I will forward it to the administrator who will be in contact. One of our forum members, Howard Rhodes is a regular contributor on the chat room and he lives in Oregon. I know it’s not near Ottawa but neither am I.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  6. #6
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    Hi Barry!
    Since I cannot PM you (maybe because I am a new member?), I will put my email here (w#####e at gmail.com) I am originally from the UK and, in fact, will be there at the end of June.
    Thanks

    Roy
    Last edited by w3junkie; 16th May 2019 at 17:25. Reason: Remove email address

  7. #7
    Forum Member Barry52's Avatar
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    Hi Roy,

    Thanks and I will forward your email to the moderator. You might want to delete this post as none members can access the forum.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  8. #8
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    Hi Roy and welcome to the forum,

    Thank you so much for posting this information, I have been looking at your Facebook page with interest..
    I was originally diagnosed with the ALS variant of MND in February 2018 but was referred to a second MND consultant for another opinion as some of my symptoms weren't typical. They called it a nearly perfect fit !

    The second neurologist asked for all the usual tests to be repeated ( thankfully not the lumbar puncture) and diagnosed PMA , as there was no evidence, as yet of upper neurone involvement. She sensitively said it could become AlS and if I wanted I could have regular EMGs to check progression but I declined as personally I would have found that stressful.

    I , like you, have found it difficult to find information on PMA because it is so rare so your Facebook page is great. I belong to the same Facebook group as Barry and enjoy the webchats on Thursday evening.

    Thank you ,
    Love Debbie x

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