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Parenting/Grandparenting-Topic of the Month-May 2017

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    Parenting/Grandparenting-Topic of the Month-May 2017

    Your Member Topic for May is here!
    You made suggestions and we listened!

    Thanks to all who participated in April's Member Topic of the Month

    For the month of May, the staff at MSW has suggested the topic to be about Parenting/Grandparenting with MS! As a parent or grandparent living with MS, we have our own set of concerns and questions about our abilities to raise our precious ones. What ways have you found that work well with you? How have you explained MS to our young ones?

    Please join us in this important conversation on ways that have been helpful or of concern to you as a parent or grandparent. Your thoughts on this topic are always welcomed.

    Thank you all for your participation and stay tuned for more of your suggestions in the months to come! We appreciate all your thoughtful ideas and hope to hear more from you! You can add more suggestions here: http://www.msworld.org/forum/showthr...TH-suggestions!
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    #2
    Interesting topic for a Mamabug / Mimibug.

    I first chose my username when I became a member way back in 2003. My kids were in middle school then. And, I certainly had many concerns in those early years with MS. It took almost 2 years for me to be diagnosed. I had one or two hospitalizations per year, often for 1 or 2 or 3 weeks at a time. Even after I got on a med (Betaseron) following dx, it wasn't very effective for me.

    My daughter, especially, at the age of 12, really began to pitch in around the house. One of the tasks she volunteered to do was all of the family laundry - wash, dry, fold - and she continued that until she left home after high school.

    I often feel like my MS changed my ability to both run a household and to parent well.

    Fast forward. About the time my kids graduated from high school, I switched doctors from a general neurologist to an MS Specialist. She immediately changed meds ("if you are having one or more flares per year, your medication isn't effective; yours isn't even borderline effective"). My MS is managed better on Copaxone. Since then, I also lost a significant amount of weight and discovered a gluten intolerance; both of these also make it easier to manage my illness more effectively.

    I am now a grandmother to an awesome grandson who will be a year old this week. My daughter is expecting her second baby in November. They live 900 miles away, but I feel very blessed that we've been able to see him somewhat frequently this year -- we've made three trips there and they've made three trips here.

    I don't get up and down from the floor very easily, which I'd like to be able to do more of. I don't have much energy for things like going to the park, or for other outings. But, I read to him, sing with him, laugh with him, etc. We skype almost weekly and he always greets us with a big smile.

    My mobility and fatigue issues will change the way I'm able to grandparent. But, I hope to continue to enjoy it anyways.
    ~ 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


      #3
      Hi,
      I've often thought about this and how to compensate for not being up to doing certain things at certain times.But overall I'm satisfied with our efforts with our 5 boys though it definitely wasn't easy. But then parenting is never easy.The thing i regret is that my incredible fatigue left little energy to just enjoy our children and at times caring for them was just another job. I am now attempting to get to know my adult children more and let them get to know me.

      My eldest married his girl last June after being together for 9 years so i believe they are thinking of starting a family. I am really looking forward to this . I really hope that my strength can be improved so i don't have trouble lifting my grandkids when they arrive. My husband and i plan to retire to our farm (2 hrs drive away) in a couple of years so I'm concerned that the exhaustion from travelling to visit them may impact on what i can do with them and how often i can cope with visits.

      With the progression I'm experiencing I'm not sure where i'll be at- but that's not really anything new- so i intend to enjoy being a Grandma as much as possible.

      Comment


        #4
        Originally posted by Carolinemf View Post
        With the progression I'm experiencing I'm not sure where i'll be at- but that's not really anything new- so i intend to enjoy being a Grandma as much as possible.
        I agree! I am enjoying being a grandma of 7 now. All my kids and step-kids didn't have children until they were in their 30's - same with me, excepting one. So, I am an older grandma with SP. They are the loves of my life, but wear me out!

        It's a blessing I had kids and raised them before my official dx in '99. When that time came, they were in HS and beyond and I thought it would be easier for them to understand. All did, except my teenage daughter. She wouldn't talk to me for the longest time. Poor thing... her bio dad passed away when she was 10 and thought that MS was going to another death sentence. We did some counseling together and it was somewhat helpful.

        A funny story - my oldest granddaughter was visiting (3 at the time) and we found her walking down the hallway with a noticeable limp and dragging her left foot. We asked her if she was OK and why was she walking that way. She cracked me up when she spoke up and said "I am walking like grandma!!" in her sweet voice and all smiles. She had my walk down to a T.

        I really don't know if I'll still be around to watch them all grow into adulthood, go to college and start their own lives, etc. but does anyone know what tomorrow brings? I intend to love and be delighted by them for as long as I can. I intend to help educate them, age appropriately, about MS when the questions come my way.

        I really feel for younger parents with MS. I hope with the newer drugs now that the progression of MS can be slowed or halted.
        1st sx '89 Dx '99 w/RRMS - SP since 2010
        Administrator Message Boards/Moderator

        Comment


          #5
          4 Kids, 9 /12 Grandkids

          I'm just about your opposite when it comes to kiss & ages Seasha!
          We had out kids when we were quite young, the 4th was born when we were just 24 yrs old. In turn, the kids started having theirs early too. I often get "accused" of being mom instead of grandma to my 2 oldest grands. (such an ego booster!)

          I was diagnosed with MS when my oldest grandchild was 9. Neuro says that based on symptoms & old lesions I'd probably had it a good 10-12 years prior to that.

          Most of the time I have such mild symptoms that my everyday life feels like before MS. The big exception is summer. Gone were carefree days at the beach, long walks on the trails, hot days at the amusement parks. We still go to all the same places, but my days must be shorter with built in rest times. I got a cooling vest for the hottest days, but it's really heavy and rather ugly, so I use it very rarely. I'm thinking of upgrading.

          My oldest 3 grandkids know about my MS, but they are OK with it, after all Grandma has always had it, so it's all normal to them.
          Like the rest of you, I do what I can to stay healthy & hope that my health remains as good as it is now. I'm planning on dancing spa storm on the wedding day of my unborn granddaughter. She arrives in early November.
          Fingers crossed.
          "Hope for the best and plan for the worst. That way, all your surprises will be pleasant."
          Verin Mathwin, The Wheel of Time by Robert Jordan

          Comment


            #6
            I love being a grandma! I have 9, with another on the way in October, and foster kids thrown in also. I love them, but they can be exhausting. I try to take them in small doses because all together I find I get a bit overwhelmed. I have to step away from the noise or I get exhausted. I taught school for 17 years, so you'd think I would be fine. But those were all pre-diagnosis.

            As far as telling them about my MS, they know and they see. They are all under 8, but I'm sure as they get older, we'll have more conversations. But for now, they love their Granny B, who always has treats and will let them watch shows because I'm too tired to get on the floor and play.
            Brenda
            Adversity gives you two choices in life: either let it make you bitter, or let it make you better! I choose the latter.

            Comment


              #7
              I'm allowed to make it public now. Daughter is expecting second baby. Micah is 12 months old. New pg is 12 weeks along. Exciting surprise for the family!
              ~ 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


                #8
                Children were great (3 biological and 1 step), but grandchildren are best (5 of them).

                My baby's baby loves her 'silly grandma'. Not sure why - we don't have great toys to play with here, and I have some strange rules she has to follow here, but she is most insistent that she visit me every chance she gets. Sometimes just for a few hours but normally when she gets here she wants to spend the night.

                My daughter called one afternoon and asked if I wanted baby to come out. I told her that I wasn't feeling that good right then, and asked for a 'raincheck'. She told baby "Grandma is sick today so you can not go to see her". She said baby looked at her like she was crazy and told her " Grandma is ALWAYS sick so why can't I go to see her?". Gotta love that logic!
                BTW - I am the only person that she is consistently "good" with.

                As TinaP said "Grandma has always had it, so it's all normal to them. "

                And like 4boysmom, I " ... always has treats and will let them watch shows because I'm too tired to get on the floor and play ".

                Comment


                  #9
                  Originally posted by Mamabug View Post
                  I'm allowed to make it public now. Daughter is expecting second baby. Micah is 12 months old. New pg is 12 weeks along. Exciting surprise for the family!
                  Congratulations Grandma!! Very exciting news
                  1st sx '89 Dx '99 w/RRMS - SP since 2010
                  Administrator Message Boards/Moderator

                  Comment

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