Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyParkinsonsTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyParkinsonsTeam Member asked a question 💭
Woking on Sea UK

Do you ever get fed up with every day and every event and every appointment being the same ? I long for something different for the conversation to be just a little different but it rarely is. It seems that's the way it is with Parkinson's

November 11, 2025
 · 
Reactions

Answer Summary

Members deeply connected over the question of whether living with Parkinson's brings unreal expectations, with many sharing the exhaustion of... Read more

Members deeply connected over the question of whether living with Parkinson's brings unreal expectations, with many sharing the exhaustion of repetitive days filled mostly with doctor appointments and little spontaneity. Several members found comfort in small joys like holding a grandchild, playing golf with good friends, exploring nearby areas, or simply getting outside for a walk, while caregivers shared how focusing on movement and moments of laughter helped both themselves and their loved ones. A recurring theme was that while the sameness of Parkinson's can feel isolating and frustrating, leaning on community, staying curious, and choosing not to give up were powerful ways to keep life meaningful.

A MyParkinsonsTeam Member

That's strange Phil, we are in that same rut in our house as well! Rick is missing driving, we used to go on long drives at least once a week. I must say I miss that too. Add on top of that the cold snap and snow we had yesterday.
But I feel blessed, we are a close knit family. Emily dropped the baby off for me to watch while she ran some errands. Rick loves to hold the baby.
And my youngest granddaughter wants to learn how to needle felt. So I worked with her felting. She made felted 'Mamaw'.
These little things have sure helped.
Mary

November 11, 2025
A MyParkinsonsTeam Member

Yes it is boring. Especially if you experienced previously travel just being able to get up and take a walk. If you are a runner to run a 5k. From my observation on this platform most of the warriors and that's why I call you have had prior interests. Nancy used to make jewelry beautiful jewelry. I have several pieces that she gave me over the years. She was an avid runner ran in the George's 4th of July downtown. She just did so many things that I personallyI was a reluctant participant. But, that said the stage she is in right now is very heart-wrenching because she cannot move anything she can't move her hands she's in a wheelchair or we put her in a chair that reclines and thatabout her head is situated such that she cannot even look out the window of a car ride. She broke the mirror that had gotten her that's supposed to have been unbreakable so she can at least look at her face she hasn't looked at her face in months. So I'm on the hunt for that. Life is always what you make it. No one's coming to save you you have to save yourself. I suppose that's why my perspective on so many things is different than everybody else's I will hunt for Joy I will hunt and try something else always and I force Nancy to participate now. So now she's The reluctant participant. But I'm so thankful that in the 46 years she's been my best friend that she has showed me the way. And in doing so as her caregiver from time to time she has shown me what will make her happy and it makes me happy to do so. So just remember the worst thing you can do is give up.
Best Elizabeth Ann.

November 11, 2025
A MyParkinsonsTeam Member

This is not how I experience life, and I never have, though perhaps this is
because I am at heart a poet, and always have been. Just looking at the way
the seasons roll through the landscape is exciting to my curiosity. I enjoy
seeing people and experiencing the weather and the light or dark as
they occur. Perhaps too because I have a naturally cheerful disposition I
see things to feel glad about. I believe there is joy in each day to be
found, or at least something to be grateful for. An attitude of gratitude
greatly helps life become more interesting.

November 12, 2025
A MyParkinsonsTeam Member

I think we tend to become too insular with Parkinsons because we are hyper aware of our declining physical health and tend to focus more on what we can no longer do. Finding replacements for work, raising children and property ownership/maintenance is hard to do because they were so central to our identity. New hobbies, exercise, charity work and educational activities are worthwhile endeavors to engage in as new ways to provide purpose to our lives.

November 11, 2025
A MyParkinsonsTeam Member

It's not just Parkinson's. I think age has a lot to do with it. As our options get limited, along with our bodies, we stop having as many opportunities to explore new places, have new adventures, meet new people. I used to look forward to upcoming trips. Those aren't possible any more. Holidays are a rare opportunity to see family, but I know from past years that the conversations will remain superficial, and our role is to listen and watch, not participate actively.

We can choose to add some variation in our lives. Join a class or support group, go explore an area nearby that you haven't seen before or not for a while, learn a new skill or improve existing ones, make a point of getting outside more often. It is hard to do sometimes, but it can relieve the boredom and keep life interesting.

November 11, 2025

Related Questions

View All
A MyParkinsonsTeam Member asked a question 💭
Sioux Falls, SD