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  • Are you raising children and also dealing with MS?

    Posted by Debi Wilson on July 30, 2018 at 9:04 pm

    Some people are raising a family and dealing with MS. Is that you?

    That has to be difficult, please share how you make it work.

    Jen replied 5 years, 8 months ago 4 Members · 13 Replies
  • 13 Replies
  • Jacqueline

    Member
    July 31, 2018 at 12:42 am

    This must be specially hard for young mothers – fathers as they never know as to whether their MS will get passed onto any of their children….They say it is NOT hereditary but, it may ( a theory ) come from one of the family members genes….

  • Debi Wilson

    Member
    July 31, 2018 at 9:07 am

    True Jackie, that is another concern. I have three grown children and four Grandchildren, and I
    Pray none of them inherent this!

  • Jacqueline

    Member
    July 31, 2018 at 10:58 am

    I have one grandchild who now is a daddy to my great grand child…I have one daughter, his mother…Until we know fully what we are dealing with, there will always be unanswered questions…MS came from somewhere…the source is yet unknown…

     

    Jackie…

  • Jen

    Member
    August 18, 2018 at 12:53 pm

    I’ve had MS since I was 27.  My 12 yo son lives in Minnesota with his dad & step mom cause the frigid winters were no good for it, among other reasons.  He has a 4 yo brother now and the hardest part for me is definitely dealing with the chronic fatigue.

    • ed-tobias

      Member
      September 17, 2018 at 3:14 pm

      Hi Jen,

      We haven’t heard from you in a while. How are things going?

      Ed

      • Jen

        Member
        September 17, 2018 at 3:57 pm

        Ed,

         

        Thank you for your concern.  Things are going okay.  Six years later and I still feel I’ve not totally accepted that this is my life.  I have a bachelor’s degree in social work…  a degree I cannot use because I can’t remember things,k my endless fatigue and working even 30 hours a week wipes me the heck out!

      • ed-tobias

        Member
        September 17, 2018 at 5:10 pm

        Glad to hear you’re hangin’ in there, Jen.

        Fatigue has always been a problem for me, too, and modafinil (Provigil) has helped. So has exercise. In the summer I try to swim a few times a week and in cooler weather I do some upper body exercises using machines in our condo’s exercise room. It can be tough to motivate myself to get it done but I’m glad when I do and I know that I feel better, physically and mentally.

        Anyway, don’t be a stranger in the forums. Holler anytime, whether it’s to share something good or to vent about something bad.

        Ed

      • Jen

        Member
        September 18, 2018 at 9:33 am

        Ed,

         

        Thank you, I’ll try to remember to be more active.  I hate the fatigue SO MUCH, I rather go back to doing the zombie walk, but MS doesn’t ask for anyone’s preferred symptoms, eh?  I used to be on modfinil and provigil but they stopped working, so then I got switched to adderall which also doesn’ t seem to work the best.l  I swear, caffeine pills work better for me!  Unfortunately, the neuro doesn’t want me taking ’em.

        We just joined the YMCA and I’m hoping it too helps my depression and fatigue!

  • Debi Wilson

    Member
    August 18, 2018 at 1:24 pm

    Taking care of my Grandchildren can wear me out! And,  I only watch them for short  intervals,  So, I can’imagine how hard that must be for you, Jen!

    Do you have anyone that can help you?

  • Jacqueline

    Member
    August 21, 2018 at 1:03 am

    Debi…

    …just a question…How does one explain our illness when asked by younger children?…It is hard enough explaining our MS to adults, the adults who dont have it, or know personally of anyone close who have it, so how does one explain this to a grand child or great grandchild in a way that will make sense to them even if it doesn’t even make sense to us…

    I have a great grandchild I have yet to see- to meet…but if or when that day ever comes and I am asked about my illness…the whys of why cant granny chase me, or why cant granny do this or why cant granny do that?

     

    Jackie…

  • Jen

    Member
    August 21, 2018 at 1:29 am

    Debi, I need to first apologize for my lack of a reply.  Honestly, I read it and then completely forgot with a nice family breakfast.  To answer your question, my husband is my biggest help and support system thankfully, but no, I haven’t made any friends where I live so its a lot of just my son & I.  My fatigue is managed with Adderall and even with that though, during weekdays I function fine with no naps or depending on life/if I’m lucky, I nap for an hour-ish while my kiddo watches a show or plays games on iPad.

     

    Jackie, you didn’t say how old your grandson was but if you’re worried about not being able to chase him around, I can assume he’s old enough to know how wires in a cord work kinda, yeah?  So if the wires get damaged the cord might not work as well, right?  I explained it that way to my older son when he was 6 and with my explanation plus observing me, he got it.  The MS society makes a cute little publication for kids called Keep S’Myelin that also helped him learn about it in an easy way.

     

     

  • Debi Wilson

    Member
    August 21, 2018 at 4:27 pm

    So glad you have a great husband to help you, Jen! Thank-you for sharing what helps with your fatigue, it’s good to know it’s helping you!

    Jackie good question about describing MS to kids!

    Jen your answer was great!
    When I talk to my grandkids I mainly describe how it feels, now I think I will also use your analogy!

  • Jacqueline

    Member
    August 22, 2018 at 2:12 pm

    Jen…

    …it is my great grandchild…although not something I need to be worrying about at this moment in time as I have yet to meet him or her but the child would now be around 2 & a half….His father, my grand-son would be coming up to 30…his mother, my daughter is coming up to 49…. When at the time of my diagnoses 3 years ago was blaming me for now passing on my MS to her, her son, and his then future child…my now great grand child…

    So you will understand this illness took away from me more than parts of my body, it also took away my family, even if it was through ignorance….

     

    Jackie…

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