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    New to MS World

    Hi, my name is Bill and I have finally decided to come out of my shell from when I was first diagnosed with RRMS in 2011. I have kept things a complete secret because of the fear of the stigma associated with the diagnosis. I had a very competitive job, and my coworkers would have eaten me alive if they knew.

    MS wasn't new to me, however. I am a physical therapist and I used to work on an MS unit at a rehab hospital for a number of years and then in their homes. When I received my diagnosis I had the advantage of knowing a lot and also the disadvantage of knowing a lot. I developed a game with my neurologist to see if I could guess which part of the brain had the lesion before we looked at the MRI.

    Recently my job came to an end. I decided to just tell everyone. I am not sure what people think of this but I am going to open my own therapy practice with a focus on patients with MS. I wonder what people on here would think of receiving care from a provider with MS?

    My greatest fear is not being available to my two daughters and wife as this disease progresses. To try to manage that stress I started a blog about random advice I am writing for my young daughters now for them to review later as adults. I want them to know their dad before the disease progresses (with a high degree of optimism that the medications we have now will slow this disease down to a crawl). Note that some of the topics are random and ridiculous- just like their dad.

    Thanks for reading and nice to meet everyone.

    Bill
    Billy Reuben
    Diagnosed in 2011 RRMS
    Rebif, Copaxone, currently on Ocrevus
    Physical Therapist
    Blogger about recording advice for my two daughters.

    #2
    Hi Bill and Welcome!

    Thanks for sharing your story with us.

    I really like the idea of your starting a physical therapy practice for persons with MS.

    You'll be keeping yourself in good physical shape as well.

    Hope you continue to post, and let us know how you're doing.

    Good luck!

    Take Care
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Welcome, Bill...though you’ve been on the site quite a while.

      Thanks for sharing your story, good for you for blogging about it for your children.

      If I were receiving care from someone with MS I would feel a stronger connection with that caregiver and expect that person to “get me”.

      Looking forward to reading your posts.

      Comment


        #4
        Hello there Bill. Welcome to the forum. Look forward to your posts.
        The future depends on what you do today.- Gandhi

        Comment


          #5
          Originally posted by billyreuben View Post
          Hi, my name is Bill and I have finally decided to come out of my shell from when I was first diagnosed with RRMS in 2011. I have kept things a complete secret because of the fear of the stigma associated with the diagnosis. I had a very competitive job, and my coworkers would have eaten me alive if they knew.

          MS wasn't new to me, however. I am a physical therapist and I used to work on an MS unit at a rehab hospital for a number of years and then in their homes. When I received my diagnosis I had the advantage of knowing a lot and also the disadvantage of knowing a lot. I developed a game with my neurologist to see if I could guess which part of the brain had the lesion before we looked at the MRI.

          Recently my job came to an end. I decided to just tell everyone. I am not sure what people think of this but I am going to open my own therapy practice with a focus on patients with MS. I wonder what people on here would think of receiving care from a provider with MS?

          My greatest fear is not being available to my two daughters and wife as this disease progresses. To try to manage that stress I started a blog about random advice I am writing for my young daughters now for them to review later as adults. I want them to know their dad before the disease progresses (with a high degree of optimism that the medications we have now will slow this disease down to a crawl). Note that some of the topics are random and ridiculous- just like their dad.

          Thanks for reading and nice to meet everyone.

          Bill
          Welcome to are exclusive club and let me say that is awesome but my concern would be insurance for you and your family because of with MS it really hard to get treatment for it. I mean financially speaking.

          Comment


            #6
            BJJ

            Originally posted by Boudreaux View Post
            Hello there Bill. Welcome to the forum. Look forward to your posts.
            Boudreaux, I noticed that you do BJJ. I am currently a purple belt but my MS has been holding me back a bit- mainly fatigue. I am having to change my game completely to pressure passing in order to reserve energy.

            Bill
            Billy Reuben
            Diagnosed in 2011 RRMS
            Rebif, Copaxone, currently on Ocrevus
            Physical Therapist
            Blogger about recording advice for my two daughters.

            Comment


              #7
              Thanks

              Originally posted by MisterMan View Post
              Welcome, Bill...though you’ve been on the site quite a while.

              Thanks for sharing your story, good for you for blogging about it for your children.

              If I were receiving care from someone with MS I would feel a stronger connection with that caregiver and expect that person to “get me”.

              Looking forward to reading your posts.
              Thanks Misterman. Yes, I joined when I was first diagnosed in 2011 but never really participated until now. I was always afraid someone would trace it back to me... now it doesn't matter! Better this way for sure.

              Bill
              Billy Reuben
              Diagnosed in 2011 RRMS
              Rebif, Copaxone, currently on Ocrevus
              Physical Therapist
              Blogger about recording advice for my two daughters.

              Comment


                #8
                Originally posted by billyreuben View Post
                Boudreaux, I noticed that you do BJJ. I am currently a purple belt but my MS has been holding me back a bit- mainly fatigue. I am having to change my game completely to pressure passing in order to reserve energy.

                Bill
                I'm currently a Blue belt grinding it out. 42, fighting at rooster with MS. Nothing but bottom game.... at 127 LBS my pressure is wanting...
                The future depends on what you do today.- Gandhi

                Comment


                  #9
                  Hello Billy and welcome to msworld. I think it's a great idea opening your own practice. I would prefer having a PT with ms.

                  I am also on Ocrevus and hopeing for the best and

                  I wish you all the best
                  God Bless Us All

                  Comment


                    #10
                    Dear Billy,
                    Thank you for deciding to participate in MSWorld. You have a lot to offer.

                    I would be happy to work with a Physical Therapist with MS. That additional knowledge and understanding would be invaluable. I workout in the pool everyday and believe that my movement routine is helping everything about living with MS.

                    Again, welcome and thank you for your efforts.
                    Stay lifted,
                    Mermaid Susan
                    "Life is short, and we have but little time to gladden the hearts of those who travel with us; so let us be swift to love, and make haste to be kind."
-Henri Amiel

                    Comment


                      #11
                      Welcome to MSWorld, Billy. Sometimes, it even feels like healthcare providers don't "get it" because they don't have MS. I'd love to have a PT who understands.
                      ~ Faith
                      MSWorld Volunteer -- Moderator since JUN2012
                      (now a Mimibug)

                      Symptoms began in JAN02
                      - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                      - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                      .

                      - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                      - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                      Comment


                        #12
                        Welcome Billy.

                        I think a therapist with MS would be comforting. Someone who truly gets why day to day, abilities and symptoms can vary with fatigue. I wish you all the best with it.

                        I also think your blogs will be a wonderful gift to your children.

                        Hope to see more from you.
                        Kathy
                        DX 01/06, currently on Tysabri

                        Comment


                          #13
                          Thanks everyone

                          Thanks for the feedback everyone. I am moving forward with my plans. I am going to take the MS certified specialist exam (I do know a lot of the content already this summer.

                          Bill
                          Billy Reuben
                          Diagnosed in 2011 RRMS
                          Rebif, Copaxone, currently on Ocrevus
                          Physical Therapist
                          Blogger about recording advice for my two daughters.

                          Comment


                            #14
                            Originally posted by billyreuben View Post
                            Thanks for the feedback everyone. I am moving forward with my plans. I am going to take the MS certified specialist exam (I do know a lot of the content already this summer.

                            Bill
                            That's awesome.

                            which team do you train BJJ with?
                            The future depends on what you do today.- Gandhi

                            Comment


                              #15
                              Hi

                              Hi Bill, what a great idea using your knowledge as a PT to start your own therapy business. MS is a disease that requires ongoing therapy either for strength and mobility or for adaptations for mobility. I worked with a physical trainer who had a lot of experience with stroke & neuro patients and he was great but I have worked with another at a large gym who saw me get stronger so pushed me to fatigue then couldn’t understand when I said back off.

                              I tried to explain to her my fluctuations in strength could vary but she couldn’t get that. I would love a therapist who “got” that and you would. I am a retired RN and I am SPMS/TM & 68. My new therapist is a 13# fur baby I walk. I still swim and snorkel, fish, garden and hike but have to limit to 3 miles. I used to competitively ski, walk, and commuted on a bike before it was hip or green! I am living in Belize in my small house in the jungle, with my husband & dog & living my dream. Go for your dream!

                              Comment

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