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New member of the Secondary Progressive club

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    New member of the Secondary Progressive club

    Hey! I just saw my Neuro yesterday and found out Iím Secondary progressive. I had a feeling that thatís what she was going to say...but it still devastated me.

    I felt like my hope to one day get some mobility back was there because of the name relapsing-remitting but it never happened for me.

    My leg started shocking me randomly in 2012 then eventually became all the time and the weakness followed suite. I just started using a walker a couple of months ago.

    But yet my MRIís were squeaky clean. It was confusing to me. Now I know that it was because my progressive disease doesnít show on mriís.

    Im letting myself feel all my feelings today and mourn the loss of mobility permanently but know that Iíve got to bounce back, and push on.

    My question is to other SPMSerís and how theyíve dealt with the transition/new diagnosis?
    DX 2005 RRMS. Did 2nd round of Lemtrada Jan 2018. DX SPMS 2019

    #2
    Originally posted by Starla View Post
    Im letting myself feel all my feelings today and mourn the loss of mobility permanently but know that Iíve got to bounce back, and push on.

    My question is to other SPMSerís and how theyíve dealt with the transition/new diagnosis?
    Hi Starla - fellow SPMSer here and have been for maybe 10 years now. It's so healthy that you let all your feeling surface and allow yourself to mourn. I have also mourned losses in the last 10 years- more than I let on with my loved ones, but with certainty manage to bounce back and push through. What else can one do? I always try to focus what I can still do and not wallow in what was, but sometimes it's still a challenge. Frustration creeps in from time to time.

    Looking back, I was also devastated because I had to quit the work that I loved before retirement age. I had lots of support from friends and family which made the transition easier. I also started attending a local MS support group which was a life saver!

    Do you have a good support system at home or access to a support group (beyond MSWorld)?
    Hang in there, Starla. We're here for you!
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

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      #3
      Originally posted by Seasha View Post
      Do you have a good support system at home or access to a support group (beyond MSWorld)?
      Hang in there, Starla. We're here for you!
      Hi! Thankfully I do. Not sure what I do without my inlaws that live nearby and my husband and my best friend. They're loving and supportive but I'm still in the depressed state and can't seem to pull myself up out of it at the moment.

      I know they're here for me, but yet at the same time I feel alone. These past couple of days I've just made little goals to achieve to keep me moving somehow. Like today was a shower and tossing a load of towels in the washer.

      Thanks so much for your post and sharing your experience. It helps for me to talk to others.
      DX 2005 RRMS. Did 2nd round of Lemtrada Jan 2018. DX SPMS 2019

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        #4
        Hi Starla - you know you have to grieve and it's OK to allow yourself that time!! If you find that being depressed for a long time is pulling you further down, maybe making an appt with a therapist would be helpful? It sure has helped me over the years.

        You taking baby steps and setting small goals is good to hear. Glad you also have wonderful support. It makes a lot of difference. Take some time to pamper yourself, eat healthy foods, rest up and sleep well. It will get better
        1st sx '89 Dx '99 w/RRMS - SP since 2010
        Administrator Message Boards/Moderator

        Comment


          #5
          Originally posted by Seasha View Post
          Hi Starla - you know you have to grieve and it's OK to allow yourself that time!! If you find that being depressed for a long time is pulling you further down, maybe making an appt with a therapist would be helpful? It sure has helped me over the years.

          You taking baby steps and setting small goals is good to hear. Glad you also have wonderful support. It makes a lot of difference. Take some time to pamper yourself, eat healthy foods, rest up and sleep well. It will get better
          Thank you!
          DX 2005 RRMS. Did 2nd round of Lemtrada Jan 2018. DX SPMS 2019

          Comment


            #6
            Originally posted by Starla View Post

            Im letting myself feel all my feelings today and mourn the loss of mobility permanently but know that Iíve got to bounce back, and push on.

            My question is to other SPMSerís and how theyíve dealt with the transition/new diagnosis?
            Yes; I also commend you for allowing yourself to experience your emotions about your loss rather than ignoring them or shoving them under the carpet.

            I'm not sure exactly where I am on the continuum between RRMS and SPMS. A couple of years ago, I asked my MS Specialist about it because I'd noticed a decline. She said I was transitioning.

            But, how am I dealing with the transition?
            - One change I made sometime after that time was that I started using a cane when I leave the house. It's helpful when I'm on uneven ground, going down sidewalk curbs, etc. It also makes people more aware that I have balance challenges and they are often more careful and more courteous around me. Using a cane could have become another change / transition that I had to emotionally adapt to. But, I've never regretted it. It's a tool that makes life easier for me.

            - Another change that I made later on -- I significantly changed my diet (no gulten, no dairy, no refined sugar; organic and healthy food choices) and my lifestyle (toxins, etc; exercising more regularly, etc) and have remained relatively stable, maybe even slightly improving occasionally.

            - Mostly, I just tend to believe that "we all have our stuff". MS is just part of my stuff so I deal with it the best that I can. I recognize that I have many blessings that I wouldn't trade just to be rid of my chronic illness. It is what it is.

            I might ask my MS Specialist where I am next visit.

            I might ask again, next appointment.
            ~ 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


              #7
              Hi all!

              Count me in the secondary progressive too. It's definitely a challenge at times but it is what it is.

              I also try to be mindful of my environment, to eat healthy and to enjoy nature and to be thankful for everything I have.

              But I also cry and feel sorry for myself from time to time. Glad to know I'm not alone!

              Comment


                #8
                Hello,

                I am so sorry about this development, please know that my prayers are with you and for you.

                Also, thank you so much for your kind words in the Charcot Project thread.

                My thoughts are with you!

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