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    • #19140
      Garrett McAuliffe
      Participant

      How do you think about socializing? I am on my eleventh year since diagnosis. I used to be very social, enjoying and hosting get-togethers and visiting with people. Now when a social opportunity comes up, my first thought is, “Will I be on or off? If I’m off, it will add stress and increase my tremor and other symptoms.” And it usually does. Even zoom meetings with old friends are an effort.  The pandemic has actually been a relief, as there are few social gatherings to engage in. But I don’t want to withdraw completely. What is your experience with social experience?

    • #19141
      Russell Wilson
      Participant

      I think you need to be fair to yourself, honest with yourself, and respect your values.

      Years “before” my illness with PD (unlike you, I’m a “new kid on the block” — only five years — looking back, like many I can recognise some early symptoms even years before the diagnosis), I was a psychologist, and spent some time considering the Acceptance and Commitment Therapy (ACT) approach to chronic pain. Central to that approach is acknowledging the experience of feelings, and seeing those in the context of other feelings, while committing to doing things consistent with one’s values. I’d like to encourage you to find out more about the approach. Ken Pakenham, Professor of Clinical Psychology at The University  of Queensland has used it with people with MS (check out his research papers), which he suffers from, but I don’t know of anyone yet using it with PD.

      The ACT approach cannot be reasonably divorced from cognitive and behavioral approaches, and naturally those approaches have something to offer coping with chronic pain and, I believe, to coping with PD.

      Ask yourself, if/when you’re off, why is it “inevitable” that you’ll be more stressed, tired, etc etc. Surely, prior scheduling and preparation for the outing might be able to be “better managed” than you’ve done in the past. What are your feelings of stress associated — your not wishing to be seen as more … what? not coping?, “abnormal”?, ….?. Are you more likely to experience these feelings around some people rather than others, can you draw feelings of support from some people and not others — make sure you’ve got your supports around you when you need them most!

      When you used to be more social / outgoing in the past, what did you hope to be able to do — can you have “more reasonable” (considering your difficulties) expectations of yourself? Can you prepare for “something special” you’ll be able to do for someone in particular in your social circle on the next occasion you see them — if this is something you particularly “value” being able to do?

      I wish you well, heck I wish us all well.  I’m aware of “needing” to “balance” what my friends say about what I’m able to do, and what I feel, in the moment — I do some voluntary work on a charitable fruit and veg “store” and “everyone’s” (some people in particular) are very supportive of me — to the extent of stopping me trying to do things they think I might not be able to do, but which I think I might — carrying particularly heavy boxes of produce — at the start of the day which I know I couldn’t manage later in the day. I get a lot out of this voluntary charitable work — social, support, validation, “do gooder” feelings. But it can be a challenge — mentally, physically, to be honest with my feelings, while acknowledging my very real limitations these days. And I have to realize it can only increase to be a greater challenge in the future.

    • #19142
      Toni Shapiro
      Participant

      Hi Garrett,  The pandemic has been a relief for me too. I also find zooming friends and family an effort.  Once on a group family zoom I fell trying to move my computer and ended up with a very colourful shiner!  My anxiety levels can get over the top particularly because I know what I want to contribute to a conversation but can’t get the things to come out correctly from my mouth, if at all.  It’s more and more difficult to explain what I want to say so I give up. People can only wait so long for a response. I am inarticulate, I stutter trying to get a word out, I abruptly stop talking because I don’t remember the word I need, I shake inside and out with frustration.   All of this causes me to shut down. Writing messages on email or WA is much better for me because I can take as long as I want to find the word to complete a thought.  I just have to make a lot of typing correcting because I don’t always hit the right key.

    • #19144
      Susan Markush
      Participant

      <div class=”gmail_default”>Hello Garrett,</div>
      <div class=”gmail_default”>It seems to me that by taking the initiative to write here, you are not succumbing entirely to withdrawal, thus isolation, thus loneliness- which is great! I am going into my 6th year post- diagnosis and though I am still quite active, your feelings are something I have thought about- if not already experienced to some degree. Recently I have accepted the truth that my friends and family may never understand what I am going through. How could they? They have no reference.</div>
      <div class=”gmail_default”>As a former health care provider I know that social isolation and loneliness can shorten life span and quality of life. I often fight the temptation to isolate myself when I am “off”. I actually force myself to do the opposite- so instead of retreating, I ask a friend over for coffee (socially distanced) instead (which is the opposite of what I want to do). I try to find humor doing so- “I’ll supply the coffee, if you will come over and make it” or “I am super shaky today, how about if I make you a margarita and we can catch up”.</div>
      <div class=”gmail_default”>I think a good therapist-though probably hard to find these days- is invaluable too.</div>
      <div class=”gmail_default”>Don’t know if this is helpful or not, but thanks for voicing a very common feeling among PDers!</div>
      <div class=”gmail_default”>Take care of yourself and your needs so that you can shine your light on others!</div>
      <div class=”gmail_default”>Susan</div>

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