Tribe Feed Forums 2023 Insight Summit Personal Parkinson’s story – Susie Black

  • Melissa McConaghy

    Administrator
    11/04/2023 at 9:12 am

    Welcome everyone to this presentation from Susie. Please post your questions and comments here and we will forward them on. Check back for your response!

  • Tammy Sanguino

    Member
    11/04/2023 at 11:43 am

    I love your attitude😃! I agree with your point of wiev. I live my today!

    • Suze

      Member
      11/04/2023 at 1:06 pm

      Thank you Tamara. It sounds like we are kindred spirits. 😉

      Keep up the good work!

  • Rhondda Kingston

    Member
    11/04/2023 at 12:00 pm

    Grace, peace and joy to you, too, Susie. You have given me so much encouragement.

    • Suze

      Member
      11/04/2023 at 1:09 pm

      Thank you Rhondda. I am so glad you felt encouraged, and now you have blessed me as well.

  • MORRIS THOMAS

    Member
    11/04/2023 at 12:11 pm

    Excellent, swimming sideways analogy

    • Suze

      Member
      11/04/2023 at 1:43 pm

      Thanks Kumar. I’m glad you liked it.

  • Brett Smith

    Member
    11/04/2023 at 12:15 pm

    I enjoyed your video. When my medication wasn’t quite right I ended up panicking about being stuck in a broken body and what the future held. So your presentation really resonated with me. The other thing that helps me is looking back at how far I’ve come. You mentioned some symptoms showed many years before. I like to look at that length of time. Pecause Parkinsons wasn’t just dropped on me. It evolved over a long time. This gives me hope that progression won’t be any faster than all of those years that I’ve enjoyed life. So looking foward syptoms may get worse but I can just swim sideways and continue to enjoy life for as long as I’m here.

    • Suze

      Member
      11/04/2023 at 1:42 pm

      Beautifully said. Your idea of looking back to the beginning to see how far we have come ministers to me. When I think of it that way, rather than having PD for two years, it’s been more like twenty. It’s amazing how such a shift in perspective can relieve some of the fear and anxiety about what lies ahead. Thank you for sharing your thoughts with me. I will remember your words the next time I start to feel discouraged. 👍

  • Peter Tucker

    Member
    11/04/2023 at 12:15 pm

    Thank you Susie for your deep thoughts about how to create meaning amid the encroachment of serious life changes. You’re so right, having PD gives us a positive thing, which is an opportunity to set an example of how to deal with adversity. That helps everyone, PD or no PD.

    • Suze

      Member
      11/04/2023 at 2:08 pm

      You’re welcome Peter. You make an excellent point, and I believe you’re right. That positive example is good for all. We will never really know the full impact of our lives upon those around us.

  • John Lake

    Member
    11/04/2023 at 12:21 pm

    A very real presentation by Suzie about what is confronting us, and how to think deeply about what will motivate us (not just today, but next year and the year after) to have the best life possible.

    • Suze

      Member
      11/04/2023 at 2:18 pm

      John, you’ve given a great summary of what it means to “Live Brave” one day at a time. 🙌

  • Steve Jobson

    Member
    11/04/2023 at 2:53 pm

    Swim Sideways-Beautiful and powerful. Thank you for sharing it with us Susie. On top of a profession that largely listens to others, you also have an art of messaging and storytelling. Very motivational and empowering. Swim well!

    • Suze

      Member
      12/04/2023 at 12:23 pm

      Thank you for your kind words of encouragement. As long as we have the ability to do so, I hope that you and I will both keep swimming and telling our stories. 😀

  • Mavis Reeder

    Member
    11/04/2023 at 3:08 pm

    It definitely helps! Swim sideways is such sage advice, in the ocean of PD that at times is definitely overwhelming. I love your sense of humour and the designated nose and your husband’s reaction made me laugh. Thank you Suze

    • Suze

      Member
      12/04/2023 at 12:31 pm

      Yes, overwhelming for sure! I am so glad I was able to bring a little laughter to your week. The funny thing is that we didn’t plan for my husband to be in the video. He just walked in right after I talked about loss of smell. I wondered if there might be other people out there who could relate.

  • Tiana Della-Putta

    Member
    11/04/2023 at 4:04 pm

    Beautiful, thank you Susie. Love the swimming sideways analogy. The concept of ‘fighting Parkinson’s’ works for many and I respect that. Personally, I find the concept of compassion and working with our bodies to compensate for the environmental damage that likely caused the PD works better for me. Please extend our thanks to your nephew too.

    Best wishes.

    • Suze

      Member
      12/04/2023 at 12:50 pm

      Thank you Tiana. I am so glad you shared your thoughts. You make a really important point. Many people with chronic illness feel they have been betrayed by their body and harbor negative emotions about the body’s inability/limitations. You have articulated a lovely mindset of kindness and nurturing. Like yourself, I am also a proponent of self-compassion.

      • Suze

        Member
        12/04/2023 at 12:53 pm

        P.S. I will mention that to Jack. When I told the story, I left out the fact that it happened on Thanksgiving Day. Three families had a lot to be thankful for that day. He really did save three lives. I am so proud of him.

  • laura lyttelton

    Member
    11/04/2023 at 6:16 pm

    Thank you Susie

    Your story reminds me of getting caught in a rip at Bondi and finding that all my strength wasn’t enough to get me back to the shore. I only started making headway when I listened to my family who were telling me to swim sideways.

    There are many days when I don’t recognise myself as this person with PD. For me, swimming sideways involves accepting the change in identity so that I can shift what it means for who I am and what my future may look like

    • Suze

      Member
      12/04/2023 at 1:07 pm

      Laura, Oh my. You have literally experienced swimming sideways!

      I like your word choice. “Making headway” in PD involves so much shifting, adapting and adjusting…and it really does touch on identity. I talked about the “Why?” You are touching upon the “Who?” That is also an important question. PD can definitely cause us to ponder so many things.

  • Jacy Black

    Member
    13/04/2023 at 4:42 am

    beautiful video that perfectly captures who you are and what you stand for. I am so proud to have a mother who yearns to uplift and encourage others through her hardest challenge. Love you.

    • Suze

      Member
      14/04/2023 at 11:26 am

      Thank you Jacy. Love you more 😘

  • Juliet Anderson

    Member
    22/04/2023 at 9:43 pm

    Wow! Susie, how inspiring! As a healthcare professional I think the principles you share can be applied to all sorts of conditions and situations. I loved your talk and would love to save it and share it more widely. Thank you for being so brave and compassionate to share your painful story so selflessly. Sending blessings to you.

    • Suze

      Member
      24/04/2023 at 11:37 am

      Thank you Juliet. Your words are very timely. I was just speaking to two friends, one fighting cancer and one managing Diabetes. We discussed the concepts in the video and shared many commonalities. Best wishes in your efforts to help others through tough times ❤️

  • Alexis Ulens

    Member
    01/05/2023 at 7:30 pm

    Thank you. Awesomely inspiring! You gave me a lot to think through! God bless!

    • Suze

      Member
      02/05/2023 at 2:15 pm

      Thank you Alexis ❤️

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