Parkinson’s News Forums Forums Awareness and Advocacy Opening up about your journey

  • Opening up about your journey

    Posted by ally on October 20, 2018 at 3:20 pm

    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?

    ally replied 5 years, 2 months ago 4 Members · 14 Replies
  • 14 Replies
  • franko

    Member
    November 1, 2018 at 9:40 am

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

    • ally

      Moderator
      November 1, 2018 at 9:47 am

      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?

      • Deleted User

        Deleted User
        November 1, 2018 at 10:24 am

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

      • franko

        Member
        December 25, 2018 at 9:11 am

        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?

      • Deleted User

        Deleted User
        December 25, 2018 at 11:10 am

        So true Franko

    • Deleted User

      Deleted User
      November 1, 2018 at 10:27 am

      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/

      • ally

        Moderator
        November 1, 2018 at 11:53 am

        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. 🙂

  • ruthie-baker

    Member
    December 29, 2018 at 9:18 pm

    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.  

  • Deleted User

    Deleted User
    December 30, 2018 at 6:57 am

    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.

  • ruthie-baker

    Member
    December 30, 2018 at 8:52 am

    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)

    • ally

      Moderator
      December 30, 2018 at 7:57 pm

      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!

  • ruthie-baker

    Member
    December 30, 2018 at 8:53 am

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

    • Deleted User

      Deleted User
      December 30, 2018 at 6:46 pm

      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?

    • Deleted User

      Deleted User
      December 30, 2018 at 6:53 pm

      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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