-
Does it feel like your Parkinson’s journey is becoming more difficult? If so, how do you cope?
In Jamie Askari’s recent column, she wrote that Parkinson’s gets harder and harder to manage as a caregiver. Her husband was diagnosed at age 38 with early onset Parkinson’s, and she often struggles to watch him change. Yet she still manages to lean into optimism to keep herself from falling into despair.
Does it feel like your Parkinson’s journey is becoming more difficult? If so, how do you cope?
-
2 Replies
-
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
-
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 🙂
-
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: meet.google.com/mdk-cxdf-mzd
Or open Meet and enter this code: mdk-cxdf-mzd
** If you are not currently an Apple+ TV subscriber, go to https://tv.apple.com. You can sign up for a 7-day free trial.
AGENDA FOR GOOGLE MEET
– 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-
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!!!
-
Log in to reply.