Advice for the Newly Diagnosed with Parkinson’s

EP 103 - podcast image

Davis Phinney Foundation Ambassador Jill Ater Talks about What’s It’s Been Like to Live Well with Parkinson’s for over 10 Years

Whatever it is you want to do, do it now. Don’t wait. Don’t put your dreams on hold.
– Jill Ater, Living with Parkinson’s

Jill Ater’s mother was diagnosed with Parkinson’s when she was 65. Jill was diagnosed when she was 42. Her younger sister also has it.

In this episode, Jill talks to Kelsey Phinney about: 

  • Her first symptoms
  • Her diagnosis process 
  • Some of the most challenging times she’s faced while living with Parkinson’s 
  • The critical treatment she chose and how it saved her life
  • One of the very best things you can do to live well with Parkinson’s

If you’ve been newly diagnosed with Parkinson’s, you’ll love the advice, encouragement and positivity that Jill offers. She’s living proof that even though there are likely to be some very difficult times, there are also fabulous days ahead.

Notes

  • It’s okay to make the choices that will make your life easier, whether it’s about where to live, your work or how you spend your time
  • Whatever it is you want to do, do it now. Don’t wait. Don’t put your dreams on hold
  • Living in the present is the best thing we can do
  • If there’s something you can do to make living with Parkinson’s better, do it
  • DBS can be a life changer for the right candidate. I went from being severely depressed and taking 28 pills a day to living life to the fullest and taking only four pills a day
  • Be patient. It can take a long time to figure out how to treat your symptoms
  • Changing your mindset is critical – this is a new reality
  • Getting involved and giving back are great ways to live well with Parkinson’s
  • Women experience Parkinson’s differently than men (more bladder infections, shift in role from being the caregiver to being cared for, etc.)
  • Four pieces of advice
    • It’s okay to feel lost. Shift your expectations and make a new plan for your life
    • Tell people you have Parkinson’s. It will help you feel less isolated
    • Don’t put your dreams on hold
    • Go to a support group or start one of your own

Concepts Mentioned in this Podcast & Further Reading


Jill Ater - The Parkinson's Podcast

Jill was diagnosed with Parkinson’s in 2005 at the age of 42. She had young children at the time and was running a successful staffing company in the Denver metro area. She soon discovered she carries a gene associated with Parkinson’s, LRRK2, shared with her mother and sister who are also living with Parkinson’s. Jill says, “Like most, I would prefer to not have to deal with Parkinson’s, but since that’s not an option, the choice I do have is to live as fully as possible and make my ‘lemonade’ by helping others to keep going. It’s all about information, empowerment and an end to the isolation that often comes for those living with Parkinson’s disease.” You can learn more about Jill and connect with her here.

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Comments (6)

This Podcast was both exhilarating and depressing. I relished Jill’s descriptions of her life and geography changes knowing that I needed to make some of the same decisions. However, my financial ability and spouse’s dementia does not allow me to do so. Still- I look forward to listening to additional Podcasts. Jan

Thanks for listening, Janice. Jill is an inspiration to so many, living with Parkinson’s or not. It sounds like you have a lot on your plate. We hope to continue to provide you the information and support you need as you travel this path with your husband. And hopefully someday soon you’ll be able to make some of the changes you desire.

I have evidently loaned my instructinal manual and not gotten it back. Is it possible to get another?

Hi Karen – I’m sorry to say that we’re currently out of the hard copy version. You can download a digital version immediately here: https://www.davisphinneyfoundation.org/resources/every-victory-counts-2017.

Great advice! I’ve met wonderful Jill and she’s been great helping me with my PD journey. My Parkinson’s is a year-and-a-half-old and it is my goal for me to do 3 – 5K’s this year! This is completely out of my comfort zone and just like Jill says, we need to do it now while we still can! Thanks once again for these podcasts.

Thank you for listening, Nicol. I’m so glad you’ve discovered the wonder and fabulousness that is Jill Ater. We are so lucky to have her in our community. Good luck with your 5K’s and be sure to let us know about them. Cheers to stepping out of your comfort zone and doing everything you can to live well with Parkinson’s.

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