Parkinson’s News Forums Forums Living ​With​ ​Parkinson’s Does it feel like your Parkinson’s journey is becoming more difficult? If so, how do you cope?

  • lori-deporter

    May 20, 2023 at 10:28 pm

    I tell myself it’s not changing, but reality says otherwise. When I get overwhelmed, I put on the Foo Fighters song, “Times Like These” and box or start drumming.


    “It’s times like these we learn to live again.”


    Lori D

  • marta

    May 22, 2023 at 8:04 am

    Yes, it’s becoming difficult, I don’t want even think about it, but when I remember myself one year ago I can see changes. For me, the best way to cope is working in the garden or just sitting in the garden and look around 🙂

  • jackie-christensen

    May 23, 2023 at 8:25 am

    I’ve had young-onset PD for more than 26 years, so my family and I are dealing with a lot. I’ve been an activist all of my life, so when I see an opportunity to organize, I grab it. It allows me to feel like I’m bringing people together.

    For example, I hope that you will join me at 9AM Pacific time/noon Eastern on Wednesday, May 24 to watch Michael J. Fox’s new documentary, “Still,” on Apple+ TV.**

    NOTE: There is no mechanism for us to communicate while we watch. We are all committing to begin watching the film at the top of the hour designated for our own time zone. If it is easier for you to watch the movie this weekend and just join for the discussion, that is totally fine. The film is 1 hour, 34 minutes.

    We will take a 10-minute break and then reconvene on Google Meet for 90 minutes at 10:45 AM Pacific/11:45 AM Mountain/ 12:45 PM CENTRAL/1:45 PM EASTERN.

    To join the meeting on Google Meet, click this link:

    Or open Meet and enter this code: mdk-cxdf-mzd

    ** If you are not currently an Apple+ TV subscriber, go to You can sign up for a 7-day free trial.

    – Introductions (name, where they live and how long they have had PD)
    – Discussion of any existing national resources/programs for people living with Hoehn & Yahr stage 4-5 (advanced stages)
    – Brainstorming and discussion of ideas for what we would like to see national PD groups or government agencies do with/for us
    – Research opportunities we would like to propose
    – Wrap-up. Do we want to meet again?

    Please RSVP to me ASAP so I will know how many folks will be joining the Google Meet. Thanks!

    Jackie Hunt Christensen
    Parkinson’s disease and environmental health activist, volunteer, and author

    • barbara-reuteler

      June 7, 2023 at 8:54 am

      My husband has had the symptoms of PD for more that 24 years and was diagnosed 13 years  ago. Now more and more symptoms  are presenting themselves and life is getting more stressful each week. For example, excessing drooling  and he falls at least once every day. He has been very lucky that do date he has not broken any bones, but we have had lots of trips to urgent care for sutures. I just dread the day when he has a major injury. Dementia, incontinence and a very unstable blood pressure are other  problems that we deal with on a daily basis. He has been a writer and now he is loosing basic computer skills. He wants to get his last book finished before he looses the skills needed.

      Yes, as time goes on things are getting a lot more intense.  He is finally accepting someone else helping with his care. It is important for me to get out, or even a few minutes alone, although he cannot be left home alone. Sometimes it is confusing that he cannot do some simple  everyday tasks but can do more complicated things. The Neurologist explained yesterday that his dementia is causing the loss of basic executive functional ability.

      Most important to me is having someone to talk to, and I appreciate a caregiver support group I go to…  and life goes on!!!

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