During our January 5 meeting via Zoom, we got together and shared how living with Parkinson’s is different for us now than it was two years ago and how it is different from when we were first diagnosed.
A few of us, some diagnosed 10+ years ago, talked about being more aware of our body and its signals. We’re more tuned-in to when we’re about to go off or are nearing our next medication dosage time. This awareness is countered by the increasing unpredictability of our medications. They work well one day and hardly at all another for no reason that we can figure out.
Anxiety was a big topic of our conversation. Social occasions create anxiety in many of us. Having friends over or going out with them can be challenging. We shared how we can, at times, fight off the anxiety or breathe through it, but there are times we can’t. One of the shoppers among us no longer feels comfortable window-shopping by herself since the time she was in a store and “the bottom dropped out.” She had to talk herself through the anxiety before she could drive home.
The physical limitations of Parkinson’s makes it difficult for some of us to retain old friendships and keeps us from being as spontaneous as we’d like. Anxiety is also a physical symptom of Parkinson’s and can kick-in when our medication levels are low. Anxiety can render our meds totally ineffective. Talk about a vicious cycle. As one of us put it, “Anxiety keeps me from living as full a life as I’d like.”
The longer you have Parkinson’s, the more likely you are going to need some help. Asking for help is a difficult hurdle for many of us. We also talked about Parkinson’s affecting the ability to concentrate, think clearly, and read, especially during off times. Reading difficulties were mentioned by many of us and can be caused by a number of Parkinson’s-related vision issues. It’s best to consult an eye doctor.
Practical advice was also shared. Several touted Yaktrax for walking on ice, others the benefits of using a walking stick outdoors. Lubricating eye drops ease some of our eye discomfort and book holders make reading easier. Home remedy suggestions for nighttime RLS (Restless Leg Syndrome) included magnesium, deep breathing, elevating your feet in bed, and propping pillows under your knees.
We shared problems with voice volume, slurred words, and swallowing, agreeing that working with a speech pathologist does help. We were reassured by those who’ve had it that the barium swallowing test is not that bad! Worsening balance is a problem for some of us. Someone shared her experience attending a show at a local theater and discovering she was one among many using a walker. She was not alone!
Which pretty much sums up the meeting for me. How I felt listening and contributing to these discussions. What I felt radiating from all of you, even in the virtuality of a Zoom room. Connection. And the outpouring of reassurance, caring, friendship, and support toward one another. We are an amazing group of women!