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    Getting Scared

    Hello, this is my first time posting. I was diagnosed with PPMS last October. At that time I was using a cane most of the time, but now my arms have become to weak to support me for very long. I am scared that I will need a wheelchair in the near future. Can anyone with PPMS tell me if a rollator will help with the arm fatigue/ weakness, or should I just reserve myself to he fact of needing to use a chair. Thanks

    #2
    Originally posted by wingnut75 View Post
    Hello, this is my first time posting. I was diagnosed with PPMS last October. At that time I was using a cane most of the time, but now my arms have become to weak to support me for very long. I am scared that I will need a wheelchair in the near future. Can anyone with PPMS tell me if a rollator will help with the arm fatigue/ weakness, or should I just reserve myself to he fact of needing to use a chair. Thanks
    Hi wingnut

    Welcome!

    I have PPMS also (with extreme right side weakness - although both legs tire easily), and use the rollator around my apartment, and for short distances. It's been my best 'helper' for several years, as it has enabled me to move about safely.

    I think using the rollator is good exercise for my weak arm and hand (along with other range of motion exercises), and also helps to keep my legs moving.

    My main issue is periodic difficulty with grabbing the handle real tight with my right hand. Even so, grabbing the handle loosely still allows me to use it, as my left hand and arm are much stronger and allow me to maintain control.

    Also, I have the type with a seat on it, which is great for sitting on when my legs tire. And it's wonderful for transporting items on the seat from room to room.

    Why not try out a rollator first, before purchasing? I have seen them at Rite Aid and Walgreens, as well as other pharmacy/medical supply stores.

    For long distances, I do need a wheelchair though.

    Any other questions, feel free to ask.

    Wishing you the best!
    PPMS for 22 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Hello wingnut,

      I have no words of wisdom for you relative to your question but I do want to encourage you in your efforts toward health and living as strong as you possibly can.

      I'm sure you realize that many small components of healthy living can add up to having a major impact on health. So I encourage you to eat well, rest well, reduce stress as much as possible, and find everyday joys in life. Please forgive me if I'm being simplistic, or just plain simple minded. I don't want to minimize what you are already doing health-wise but I just wanted to encourage you.

      It helps to know others care because strength is gained when we know someone else cares about us. I know that happens with me and I'm sure it does with everyone.

      You are in my thoughts and I'm praying for you as I write this that God will give you strength and understanding of what to do and how to accomplish it while maintaining a heart and mind confident of the future. Don't give up or give in. You have a bunch of living ahead of you. Live every day you get! Make that your goal and each day will present new opportunities you didn't see the day before.

      I am hopeful that a cloud of love will envelope you right now and that you will feel it and sense it keeping you well in spirit, soul, and body. May God bless you in no casual way. My thoughts are with you.

      Comment


        #4
        thank you both for the advice and encouragement.

        Comment


          #5
          Hello Wingnut

          I was diagnosed 20 years ago and have ppms. I feel your angst about canes, wheelchairs, etc. We need to accept the fact that we have an incurable illness at this time. Yes, I am very optimistic we will have a cure. In any event I have chosen to fight my MS thru 3 weekly visits to the gym every week. My health is excellent which affords me the strength in body and mind to live.

          Hang tough and always understand that you could be so much worse.

          Still fighting, Dan.

          Comment


            #6
            Hello Wingnut

            I feel EXACTLY like you. I have been diagnosed PPMS, my main symptoms were fatigue, right side weakness and leg issues that require me to use a cane--mostly for balance. Over the last two years, my arms are giving me problems as well. It's most noticable when I wash, dry or fix my hair, or any other activity where my arms are up. They will feel so heavy! When I am in a store using a cart, they will somtimes feel that way then too, which makes me panic a bit, thinking a rollator may not be my eventual answer.

            At this time I am on no medication, and have "fired" my MS specialist and cannot see a new one until the end of January. Are you on any medication?
            Donna K: dx RRMS 12/07. Rebif 2/08 - 3/09, Tysabri 3/09 - 7/12, ended due to JCV+. Betasaron 8/12 - present
            Filed for SSDI 8/12. Approved 11/12
            dx PPMS 7/13. Added Metotrexate 2.5 mgx3 to Beteseron. Stopped all meds 3/14 to quality for ibudilast clinical trial for PPMS

            Comment


              #7
              Rollators

              I have started using a tripod rollator with a tray and basket and bag attached and find it very handy
              in the house. I have also ordered online (Amazon) a lightweight rollator to take when going to the
              doctors and so on. They are very helpful as the cane was no longer giving me enough support and I have balance and fatigue problems especially in this stinkin heat in Missouri this year. I imagine
              that I might eventually need a wheelchair or scooter but am using the rollators for now. I have
              had MS for 23 years and it was very mild for that time mostly and did not cause me to have to use
              a walking aide so I am taking it a day at a time. I am wondering about what type of medicare might give me household help and will post another thread of that.

              Comment


                #8
                Originally posted by SummerTobin View Post
                I have started using a tripod rollator with a tray and basket and bag attached and find it very handy
                in the house. I have also ordered online (Amazon) a lightweight rollator to take when going to the
                doctors and so on. They are very helpful as the cane was no longer giving me enough support and I have balance and fatigue problems especially in this stinkin heat in Missouri this year. I imagine
                that I might eventually need a wheelchair or scooter but am using the rollators for now. I have
                had MS for 23 years and it was very mild for that time mostly and did not cause me to have to use
                a walking aide so I am taking it a day at a time. I am wondering about what type of medicare might give me household help and will post another thread of that.
                Hello Summer

                Thank you for sharing your experience with using rollators.

                I use a 4-wheel rollator (I need the full support) and it has helped me to continue walking.

                Taking life 'a day at a time' works for me too!

                Take Care
                PPMS for 22 years (dx 1998)
                ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                Comment


                  #9
                  Originally posted by SummerTobin View Post
                  I have started using a tripod rollator with a tray and basket and bag attached and find it very handy
                  in the house. I have also ordered online (Amazon) a lightweight rollator to take when going to the
                  doctors and so on. .
                  Hi SummerTobin!

                  Thanks for your post about a tripod rollator. I have a 4 wheel rollator I use at home all the time, but find that it's awkward and a bit heavy to fold and load up in the car to go shopping, etc.

                  I'm going to do some research on the trifold ones and wondering what is the weight of yours? Does it have a seat? Thanks for reminding me that I need to do this!
                  1st sx '89 Dx '99 w/RRMS - SP since 2010
                  Administrator Message Boards/Moderator

                  Comment


                    #10
                    Thanks for your post. I like to follow threads like this carefully, because it is likely my future. I've had MS for almost 18 years. I started using a cane about 2 years ago, when I leave the house. It is still adequate for me for most situations. But, I can only walk a block or two, so for activities that include more distance, I sometimes take my power chair. We were fortunate to find a used one for an awesome price, otherwise I wouldn't have invested in one.

                    I wonder how soon I might need to begin using a rollator. For now, I'm fairly stable. I made a lot of dietary and lifestyle (getting rid of toxins, etc.) changes in my life in 2018 and that has seemed to keep my MS from continuing to progress for now.
                    I want to echo what Myoak said. This is advice that I often give. I believe those strategies are as important as taking our meds.
                    Originally posted by Myoak View Post
                    I encourage you to eat well, rest well, reduce stress as much as possible, and find everyday joys in life.
                    I wish you the best as you continue to live one day at a time.
                    ~ 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


                      #11
                      Rollators

                      Someone asked me what weight was my rollator. the one I use in the house has a tray and is tripod shape. I think it is about 18 pounds so I ordered a real light weight tripod rollator on Amazon and it
                      very light weight and love it for shopping and movies and eating out. It is like 8 pounds and does
                      not have a seat. It really is easy to throw in the back of my SUV and to pull out etc.

                      Comment

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