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    • #18087
      Mary Beth Skylis
      Moderator

      Living with an illness is hard enough. You have to navigate the constant turbulence of change. But often, the wider public doesn’t understand disease. And stigmas arise out of the discomfort. But being able to communicate about the hard times seems to bring a tremendous amount of relief.

      Have you experienced the stigmatization of Parkinsons? What ways have you learned to educate the general public? Is it getting easier to open up about the struggles?

    • #18144
      Argya Bayuaji
      Participant

      Hello Mary and My Friends 🙂

      I often get stigma about Parkinson’s disease and dystonia that I suffer. Even now. Some say only lies, mental disorders, seeking attention and others. Even when I consulted a psychiatrist, it was considered a schizophrenic disorder. Though handling Parkinson’s disease must be comprehensive.

      All I do is keep quiet and stay positive because maybe they don’t understand. My condition is indeed rare in my area as a young Parkinson’s sufferer. I keep spreading messages about Parkinson’s disease and degenerative motion disorders. I always share about Parkinson’s Disease, movement disorders or even degenerative diseases. I currently use a stick as a support for balance and anticipation if I fall because of postural instability. keep spirit and positive 🙂

      Argya Bayuaji
      Yogyakarta, Indonesia

    • #18145
      Argya Bayuaji
      Participant

      Hello Mary and My Friends 🙂

      I often get stigma about Parkinson’s disease and dystonia that I suffer. Even now. Some say only lies, mental disorders, seeking attention and others. Even when I consulted a psychiatrist, it was considered a schizophrenic disorder. Though handling Parkinson’s disease must be comprehensive.

      All I do is keep quiet and stay positive because maybe they don’t understand. My condition is indeed rare in my area as a young Parkinson’s sufferer. I keep spreading messages about Parkinson’s disease and degenerative motion disorders. I always share about Parkinson’s Disease, movement disorders or even degenerative diseases. I currently use a stick as a support for balance and anticipation if I fall because of postural instability. keep spirit and positive 🙂

      Argya Bayuaji
      Yogyakarta, Indonesia

    • #18149
      Ally
      Keymaster

      Argya, your messages are always very encouraging to read. I think that small efforts over time do add up and create change. I believe that all the seemingly small and “quiet” ways you’re advocating for Parkinson’s now will pay off in the future. Your efforts today are creating a different world for people with Parkinson’s in the future.

    • #18174
      Mary Beth Skylis
      Moderator

      I agree with Ally on this one, Argya. You are such an inspiration, and I feel very lucky to get to read your stories. Keep fighting the misinformation! Parkinsons definitely isn’t aa schizophrenic or mental disorder. And I think it’s great that you’re trying to learn as much as you can about what’s really going on. I hope that it becomes easier to educate people about Parkinsons Disease!

    • #18179
      Argya Bayuaji
      Participant

      Thank you so much Ally and Mery

      I will continue to educate about Parkinson’s Disease. I always share the knowledge that Parkinson’s is not a psychiatric disorder, schizophrenia, or curse. I always say that “We can still do something” to people. Stigma among young people who tend to diagnose briefly. even though it’s not justified. Social and environmental support is also very important to help encourage the psychological and physical condition of people with Parkinson’s Disease. Because in my area, Parkinson’s disease at my age is very rare. Even the doctor was shocked. But I continue to struggle with the positive energy that I will share, especially among young people.

      Keep spirit and positive

      Best regards

      Argya Bayuaji
      Yogyakarta, Indonesia

    • #18180
      SteveNaive
      Participant

      I can see this one coming a mile away when my voice is “park’d”. The stranger I am conversing with hears my voice and immediately drops into the dialect they use for dealing with mentally disabled persons. Every syllable is broken apart and spoken very slowly as they nod their head in agreement to whatever they think you are saying. From here on out, there is nothing you can say to get them out of that mode. You’re probably best off finding someone else to deal with.

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