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Anyone have a spouse with Primary?

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    Anyone have a spouse with Primary?

    Hey- is anyone out there like me?

    I am 50 and have a sweet hubby whose SPMS or PPMS is getting worse.

    I am scared and sad and need to talk. Can anyone out there relate?

    Thanks friends. Please send hugs.

    Hi Cecelia,

    I can't help you from a caregiver's perspective, since it's me with the MS, but there is a forum specifically for caregiver's, and I know you'll find lots of info and help from a caregiver's perspective on that board.

    If you go to the main list of MSWorld Forums, you'll find The Family Room forum, click on that and there is one specifically for caregiver's to support and encourage each other.

    You 're doing a good thing in seeking out others input who are in the same situation. I hope your husband appreciates
    your support.

    Sorry I couldn't offer more help.


      Thanks so much-I am pretty new, and get lost in here! It is a big place. Thanks for the pointers! Very kind of you. : )


        Whoops! Forgot to subscribe to the thread.... : )


          Spouse with PPMS

          Cecila, My hubby was diagnosed with PPMS in the spring of 2010. He is now 60 years old with fairly limited mobility. He is under the care of a major MS center and has a baclofen pump, takes ampyra, and is undergoing physical therapy. We are both retired and are making the best of life. We'll be going on a European cruise later this summer. He was a firefighter but placed on SSDI shortly after being diagnosed.

          Please remember that every case of PPMS is unique, and many patients progress very slowly. I would encourage your hubby to see an MS specialist if he is not already doing so. Most general neurologists are not terribly knowledgable about MS, much less PPMS. An increasing amount of clinical research for PPMS is being done with the new oral disease modifying medications and with central nervous system repair.

          I'm sending hugs and prayers your way!


            My hushand, aged 64, has had ppms since about 2000 (with symptoms since 1995).

            Things weren't too bad for him until about 2005, when his walking ability really began to decline. He went from one cane to two, to a scooter and has been fulltime in a wheelchair since 2010. He still has fairly good control of his hands and arms, therefore can still transfer in and out of his wheelchair and toilet himself. Falls do happen though, and I use a portable bathlift to help raise him - he refuses a hoyer. We have aides that come in four times a week to help him bathe as we don't have a roll-in shower. Will most likely have to move from the house I love.

            I now notice his speech is changing and he is tired very easily, seems to be in another world at times -- not sure it it's depression or cognitive changes.

            I have to say this disease has ruined our lives and all our plans for the future, as well as taking an already troubled marriage and making it even more difficult. I don't feel I've had a husband for many years -- not so much because of the ms, but because the disease has created even more distance between us and exacerbated the problems we already had.

            I too and depressed and scared -- we don't have any kids and I feel totally alone with this. It tears me up to see my once active and very brilliant husband now a mere shadow of himself.

            I hate this disease and how it continues to take us both down piece by piece.

            I'm so sorry for this very depressing post, but sometimes people sugarcoat ms and it's not that way for many people dealing with progressive cases.

            My heart goes out to you and to all spouses and caregivers.


              Cecilia I replied on the other thread. I'm sorry my response is probably depressing but my marriage was not a good one when this all started and this colors my response somewhat.

              PPMS can progress very slowly - from start of sx to to wheelchair took 15 years for my husband and he worked as long as possible.

              Take advantage of his abilities now, before things change. Take trips, enjoy one another -- and also plan for future needs. Buy a one level house if possible and plan for things like roll-in shower, wider doors to accommodate wheelchair access etc. I wish my husband had wanted to confront these things and it's made life harder in some ways.

              Best of luck and prayers to you and your hubbie.


                I merged the two threads together so that you don't end up with answers everywhere. I hope you do not mind.
                MS World
                PPMS DX 2001

                "ADAPT AND OVERCOME" - MY COUSIN


                  My Husband also Has PPMS

                  It's dreadfully painful watching a very vibrant man who is in tip top shape be reduced to this aweful disease. We still hope that there will be some stem cell therapy that can reverse the tissue damage.

                  I am struggling with both guilt and wondering how to manage a situation where my spouse may become very reclusive due to the stigma associated with walking devices and a pure sense of loss of pride.

                  It is scary. Anyone have any advice. I don't want to lose what was and has been a great relationship.