Living With Parkinson's Meetup: July 2023 - Relationships

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During this session, panelists discussed how their relationships have changed, grown, and faded since being diagnosed with Parkinson's. As always, our panelists speak with honesty and emotion and make everyone affected by Parkinson's feel less alone.
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Time Stamps:
0:00 - Introduction
8:40 - Start of discussion on relationships and Parkinson’s
11:45 - How relationships can strengthen
18:20 - How to find people that are going through a similar experience
24:40 - Feeling like a burden and wanting to hide
31:22 - Finding situations where you feel like you can be yourself and humor
38:23 - Getting out of a funk
50:36 - Learning to ask for help
54:53 - Conclusion

[@catherinewalpole6392]

I love you all. You have helped me feel less alone. The changes in my relationships have actually been the hardest part of Parkinson’s for me.

[@catherinewalpole6392]

Brian, I struggle with those feelings of “who would want to get with this?”, also and I liked your way to cope with that.

[@splashesin8]

Hi everybody! I miss making it when it's live, but love catching up. 😊

[@lavontolbert3864]

I just wish I could get a diagnosis! In my area I can’t see a Neurologist until next January. My GP has sent a referral to many within a 50 mile radius. In the meantime my symptoms are getting worse.

[@splashesin8]

All the time I'm thinking, "What is my deal?" "Why can't I do this simple thing right now?" It's the variable drastic differences day to day, and the one amazing day out of ten, that makes it seem so illogical. Like if it works for me randomly one day, why not everyday. I wish I knew, or could control when I'm well, and when I'm not. No idea. can't let myself get mired down trying to explain. It just is. I will try to make the best of what is happening.

[@davisphinneyfdn]

The variability can be so hard, but we love that you're trying to make the best of it! Have you explored any of our resources on mindfulness? You might find them helpful. The more practice we have at focusing on what's happening in a particular moment, the more likely we are to notice day to day changes that might be affecting our abilities and contributing to some of the variability of Parkinson's. davisphinneyfoundation.org/meditation-mindfulness-parkinsons/ This is of course not a "silver bullet" or a cure-all, but even the smallest victories count.

[@splashesin8]

@@davisphinneyfdn Certainly will check out the link. Every little thing can help. Sometimes there's just an unavoidable situation that usually exacerbates things because it forces me to remain still, and fully dressed, in a confined spot all day, or just too many hours without having the leeway of changing positions, or taking the time necessary for certain bodily functions, and not having adequate hydration or risking eating, before. I need to start eating and trying to shower and dress 6 hours ahead of time, to get through the hurdles to help me endure the all day activity or stillness, and mitigate the dystonia fallout, as much as possible along with a hive like rash that will happen as I get undressed, and try to go to sleep, immediately following those type of appointments. Just me alone doing things inside, I can stay mostly undressed and frequently change positions and do whatever I need to do when and for however long is necessary to avoid a lot of the worst episodes, or at least get in a better position to wait until something does what it does and naturally wears off, without my fighting it, like a lack of ability to stay conscious for awhile usually occurring a couple of hours after I'm up and trying to get dressed to leave or wait for an appointment of some sort in my apartment, where I have to let someone in. Some of this just goes with not having a spouse or roommate. On the other hand having a roommate that is not a spouse can make things even more difficult. The heat with no a/c is also rough, during these times I have to stay dressed at home. I never used to be so much of a nudist, or semi nudist. 🤣 It really has become part of how I can just get horizontal quicker and more often and just get shoes off easier and not drag itchy stuff that seems to Velcro to my pants cuffs and transfer to places I need to recline or perch in when I'm not standing, or walking, or climbing, or being confined inside of a vehicle. I have tried to use the swimsuit method of a way to be more dressed, inside my living space. It's just tough, with that fabric in the heat, than say just cotton briefs or something and substantial shoes while I'm trying to do chores. Being fully dressed outside is a little easier, except I can't stand up forever and its usually 100° or more for several months daily. The ergonomics of my computer workspace could be better, I just don't have the funds and space for it really. I realize what I'm saying a is little embarrassing but it is my reality, and I might not be the one dealing with these symptoms. There are things I do to keep myself functioning in better condition. I just have to limit my social interactions in person at home. I'm beginning to think that maybe it's not extra allergens causing the recurring hives. Am starting to wonder if it's part of my overall motor neural problems. Just leaving this, without editing the uncomfortable parts in case anyone else might relate. I find socializing in the pool to be what I can do for the longest amounts of time, dressed like every one else there. 😃

[@kansasgrandmasstorytime7958]

I sat 5 hrs.

[@splashesin8]

I don't mind educating. I just don't appreciate being presented as a cautionary tale, that others can avoid having happen to themselves if they just try hard enough, or mind over matter hard enough, or believe enough in whatever everyone else is sold on would magically make it go away.

[@kansasgrandmasstorytime7958]

I find that people don't invite me to go to places. It would be great to go places.

[@davisphinneyfdn]

We invite you to reach out to us at [e-mail]. We may be aware of events or have resources to recommend in your area.