Susan Markush
Forum Replies Created
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Hi Mary Beth,
Loneliness has started to creep into my life for the first time. I am a single woman with grown children. I just started to work from home because I can no longer teach in person. I find it really exhausting sometimes to interact with people the way I used to (slurring of words while sitting at a cafe or at a get together, having to really concentrate on my walking while talking -as examples) so I too have started to withdraw. People do not understand because I hide my symptoms so well and I certainly do not want them to feel sorry for me. I look around and feel like I am the only one with Parkinson’s but I know there are others. With that said, I do find happiness when I am hiking in the woods, working in the garden and taking care of my animals (I can be with them all day). Also, I have a really chatty friend who loves to do all the talking so I hang out with her when I need human companionship. I try to focus on the little victories, though I am thinking about this more as I age. Does anyone else have strategies?
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<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> -
I started sleeping with more and more blankets on me before I was diagnosed- even during the summer. I wonder if I figured out it helped me sleep before I knew the reason. I definitely get a better night sleep with weighted blankets!
Susan