This topic contains 14 replies, has 4 voices, and was last updated by  Ally 6 months, 3 weeks ago.

  • Author
    Posts
  • #12337
     Ally 
    Keymaster

    A big part of advocacy and awareness involves sharing our personal stories about how living with PD (or any condition) has changed us. How much of your story do you share with others? Do you share it informally in casual conversations, or have you used a blog or other platform to share it more “officially” as someone within the PD community? Why have you chosen to share (or not share) your personal PD story with others?

  • #12777
     Franko 
    Participant

    Yeah, I always share any kind of illness or depression I feel with my mother. Alleast she can give me good guidance or consolation.

    • #12778
       Ally 
      Keymaster

      Thank you for sharing, Franko. Sharing with close family and friends is great. I’m glad your mother is a source of support to you. Are you able to access any formal mental health supports as well?

      • #12781
         Jean Mellano 
        Keymaster

        Franko, I am happy you have your Mom in your life to share with…  Thank you for your response.

      • #13288
         Franko 
        Participant

        Sorry for my late reply guys. Thanks for your support. Actually, the family is everything from where everyone life starts. If we don’t share our personal issues with them how shall we get the solution?

      • #13293
         Jean Mellano 
        Keymaster

        So true Franko

    • #12782
       Jean Mellano 
      Keymaster

      Hi Ally, I think it is important for humans to share their experiences with others as it makes us feel as though we are not alone in what we are going through.  I have a blog about my PD life:

      https://slippedawayblog.wordpress.com/category/parkinsons-disease/

       

      I also have a column for this website where I share my journey and thoughts about PD:

       

      https://parkinsonsnewstoday.com/category/slow-is-the-new-fast-a-column-by-jean-mellano/

      • #12783
         Ally 
        Keymaster

        Thanks for sharing, Jean. I think that you sharing your experience online is also a huge source of support for many people with PD. I really enjoy your columns, too. 🙂

  • #13304
     Ruthie Baker 
    Participant

    I struggle with not being independent, being able to jump into the car with one of my kids after they had a hard day at school.  I’d take them for 1-1 time to just listen to them, encourage them..  I still do the encouraging. I can self- validate myself; but it’s nice hearing how my loved ones enjoy being around me.  I hurt so much.  My daughter is holding onto real anger issues.  One is at me, so she says.  I know it’s at my limitations preventing me from being her active mommy.  She is now 19 and I assure her often but she’s angry that we m dying.  I can’t get an agency to send me CNA care that I have approve and 24/7 care.  I’m left unattended.  I depend on others to really help me do my daily routine.  I’m isolated her.  No one visits, and the new pastor asked me to go to a different church.  I tend to go on and on. I’m sorry.  

  • #13305
     Jean Mellano 
    Keymaster

    Dont be sorry Ruthie.  You are entitled to  your feelings.  None of us can judge unless we have walked a mile in your shoes.  Hang in there, I am so sorry for your pain and wish I could help you.

  • #13306
     Ruthie Baker 
    Participant

    I’m a tad down right now, but NOT defeated!  It hurts when someone who should love you (spouse, child, parent, friend) refuses to treat me with respect and NOT blame me for what I have no control over.  I get the anger.  The fear.  I long to have my spouse put past hurts and hang ups in his life behind and wrap me in his arms and assure me I AM NOT ALONE!  I can’t control him as I can’t control my health.  What I can change is MY outlook.  I am blessed to have my sister in my life, to have had a loving mother, to have learned how to live my life for the better.  I am also thankful that I stumbled on this site and been accepted as a member.  God is surely good & I want Him to say to me when He sees me (“Well Done” -by The Afters)

    • #13311
       Ally 
      Keymaster

      Thanks for responding, Ruthie. I agree – God is good! I love your outlook and I’m glad to hear you have some support around you, even if  it’s not found in your spouse. Thanks for being a member of this community. We’re looking forward to hearing more from you!

  • #13307
     Ruthie Baker 
    Participant

    Can anyone teach me how to post and reply for all to see and not only mediators?

    • #13308
       Jean Mellano 
      Keymaster

      Ruthie, your responses to this topic (opening up about your journey) should be showing up for all to see.  Why do you think they are not appearing?

    • #13309
       Jean Mellano 
      Keymaster

      You are a wise woman Ruthie and I love the positivity in the above post; counting your blessings, changing your outlook, being thankful… You are an inspiration, in spite of the challenges you face,  you still are trying to maintain a positive outlook.  You are not alone.

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