• Loneliness and Parkinson’s

    Posted by Mary Beth Skylis on April 17, 2023 at 9:17 am

    Navigating a chronic illness can be really difficult for a variety of reasons. But one thing that is often overlooked is the loneliness that it creates. Without the right community, it’s really easy to feel misunderstood, or unseen. I, personally, tend to withdraw from my community when I feel this way.

    Are you lonely? What do you do when you’re feeling that way?

    Douglas Savchenko replied 1 year, 1 month ago 4 Members · 4 Replies
  • 4 Replies
  • Susan Markush

    April 17, 2023 at 12:05 pm

    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?

    • Anne Wray

      April 19, 2023 at 8:48 am

      Hi marybeth-

      I do ALL the things you described! I feel like ‘pretending’ I do not have Parkinson’s when I am out in public is just exhausting, to the point I just opt to stay home. I have always been a social person and am feeling very alone and out of touch. I wish I had ideas to offer but I feel just like You!

  • Krukar

    April 18, 2023 at 1:50 pm

    Hi Mary Beth.
    I think loneliness can be a part of the isolation that we all must fight. Parkinson’s shows  up in so many ways. If it is not one thing than it can be another. This website does an outstanding job  of  keeping folks in touch. Blessings, Mike






  • Edward Fritz

    April 18, 2023 at 4:17 pm

    I’m 6 months now into my Parkinson’s journey, and much to my surprise my mood has been exceptionally good during this time. I’m an introvert by nature, so maybe that helps. However that being said, introverts tend to withdraw into themselves even more than normal when they feel stressed. One way to deal with this is to participate in less threatening activities, such as online support groups (this group being one example) that require less personal interaction.

    I do find it helpful to enroll in activities that I enjoy or that sound interesting. I do Rock Steady Boxing 3 days per week, work via zoom with a personal trainer 5 days per week, have zoom classes 2 times per week at the Juilliard School (I’m an accomplished amateur pianist – at least I was until Parkinson’s came along), and just started a calligraphy class that meets once a week. Check with your local community center and Parkinson’s organizations to see what’s available, and look online for classes that sound interesting. Some of the best Universities in the country offer free online courses.

    We’re all going to experience “down” days when we feel like not socializing. Look for those things that make you feel better on those days. Susan mentioned hiking in the woods. Being out in nature can have a great calming effect. For me playing music I love can transport me to a wonderful place where Parkinson’s doesn’t exist!

    Finally recognize that you’re not alone in this battle, and others you may meet who have PD can be understanding and comforting at these times. And thank you for starting this topic. Just asking this question reassures others that they’re not alone.

  • Douglas Savchenko

    April 18, 2023 at 4:30 pm

    For me it is largely caused by a “misunderstanding” of; the medical community, other patients, myself, family, friends and the public. Example, I was at a family event where my brother-in-laws best friend was in late stages with Parkinson’s and had pronounced tremors. When introduced, my daughter said – “….this is my father…. He has Parkinson’s as well…..”. The response from the friend was “….where’s your tremors?” I was diagnosed 5 years ago and still have only light – barely perceptible tremors and rigidity but boy did I get other symptoms in “excess”. We had a “movement disorder/Neurologist” even criticize us for essentially “….wasting her time…” by getting an appointment when I don’t need it. I wasn’t trying to do anything other than find a Neurologist who could help us navigate the problems, medications and other treatments. Like others, I am in my 60s with other physical ailments that can be Parkinson’s related or ? This adds to the doubt and frustration. I hope this isn’t read as a “whiney guy” but having a Neuro-degenerative disease that has so many paths and outcomes is bad enough. Not knowing what trajectory I will follow is scarey and stressful. COVID shut down so many of the support mechanisms available before 2020 like exercise groups, support groups and such and not getting empathy/support from the community I depend on, and expect help from, like Doctors, other patients and such – really causes a huge sense of isolation and loneliness.

  • Marta

    May 15, 2023 at 1:52 pm


    My name is Marta, 43 y.o. diagnosed 4 years ago,married, with kids I’m new on this site. My english is not great, butI think you will understand me. The reason I’m here: I’m from Croatia, small country where is not to manny people with YOPD. On the day of my DATScan, in group of 75 + old people, I was lucky to meet women only 5 years older with same diagnosis. We change the phone numbers and of course became a great friends and support to each other. One month ago my dear friend died. I can’t described how I feel lonley and abandoned. I hope I can find some friend and support here.


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