Local Support Group PSP, MSA, CBD

Not sure if you should attend a local support group?

Thanks for sharing. By:Larry Linton 🙏❤️

“It took me ten years, but this week I attended my very first support group. I wished I had joined earlier.

As I have previously written, the very first thing I did on the day I was diagnosed was to google "Young Onset Adult Parkinson's Disease" and I was traumatized. I had no terms of reference or any understanding of what I was reading or seeing - "freezing", "dyskinesia", dopamine agonists" were words that were added to my vocabulary very quickly, but with no real understanding of what they meant.

And, if those first images of what I seeing were any indication of what my future self looked like, I wanted to have no dealings with anyone, let alone myself. In fact, I became a recluse for pretty much the first year following my diagnosis, overcome with extreme anxiety and depression. When I did manage to head out, I couldn't wait to return to the safety of my home, and my couch.

But this week, I realized that my approach was wrong: Joining a support group would have had a much better impact on me emotionally and mentally from the start of my relationship with PD. As we went around the table, each attendee introduced themselves and briefly outlined their journey with Parkinson's Disease. One was diagnosed only a month ago; some within the last year; a couple weren't taking medication at all, some were seeing a naturopath; another had gone through DBS; one was being scheduled for that procedure.

We all had the opportunity to engage and learn from each other. I found it therapeutic as we shared experiences on various topics like medication, the importance of diet and exercise, the importance of rest, the benefits of mindfulness, and also to allow yourself to grieve and then to find the laughter and joy in living with PD.

The success of the meeting was based on the following:

a. There was a facilitator who kept the topics and discussion flowing.

b. The facilitator didn't do all the talking, and encouraged those who were quieter to contribute to the discussion.

c. There was a tremendous feeling of empathy and support for each other.

d. The group shared a few jokes which counteracted with some of the more serious discussion points

From time to time, I glanced over to the "newbie" and at times she was very emotional and tearful. But she was there, and that was the crucial difference. At the end of the session, she was smiling and interacting more confidently with the others. She learnt first hand that Parkinson's Disease affects everyone differently; and that the direction and progress will be varied and as different as each attendee. She learnt in two hours what it had taken me nearly a year to figure out on my own.

I will be back at my next month's support group and hope that she will be there too!

Until next week, Live Your Best Life Today!

P.S. I am very excited to let you know that I am six chapters into my book, "My life with and without Parkinson's". I can't wait to share it with you all!”

Written by Larry Linton and shared with permission
Toronto, Ontario 

Back to blog

Leave a public comment:

Please note, comments need to be approved before they are published.

PSP Awareness Shop

Make a purchase with purpose. Each sale supports the fight against Atypical Parkinsonism through the Coleen Cunningham Foundation for PSP Awareness!

Shop Now
  • Advancing Neurological Research: The Impact of the HEALTHY BRAINS Act

    Advancing Neurological Research: The Impact of ...

    Laura Louizos

    As the Executive Director of the Coleen Cunningham Foundation for PSP Awareness, I am thrilled to share the significant progress in the fight against neurodegenerative diseases through the introduction of...

    Advancing Neurological Research: The Impact of ...

    Laura Louizos

    As the Executive Director of the Coleen Cunningham Foundation for PSP Awareness, I am thrilled to share the significant progress in the fight against neurodegenerative diseases through the introduction of...

  • Diet and Nutrition for Atypical Parkinsonism: Best Practices for Health and Well-being

    Diet and Nutrition for Atypical Parkinsonism: B...

    Laura Louizos

    Atypical parkinsonism encompasses a group of neurological disorders that present symptoms similar to Parkinson’s disease but with distinct differences and additional challenges. Proper diet and nutrition play a crucial role...

    Diet and Nutrition for Atypical Parkinsonism: B...

    Laura Louizos

    Atypical parkinsonism encompasses a group of neurological disorders that present symptoms similar to Parkinson’s disease but with distinct differences and additional challenges. Proper diet and nutrition play a crucial role...

  • Navigating Progressive Supranuclear Palsy: Embracing Individual Journeys

    Navigating Progressive Supranuclear Palsy: Embr...

    Laura Louizos

    Progressive Supranuclear Palsy (PSP) and similar neurodegenerative diseases present a unique set of challenges for each individual. While there are commonalities in symptoms and progression, each person's journey is distinct....

    4 comments

    Navigating Progressive Supranuclear Palsy: Embr...

    Laura Louizos

    Progressive Supranuclear Palsy (PSP) and similar neurodegenerative diseases present a unique set of challenges for each individual. While there are commonalities in symptoms and progression, each person's journey is distinct....

    4 comments
  • Tips to Avoid Aspiration Pneumonia with Progressive Supranuclear Palsy (PSP)

    Tips to Avoid Aspiration Pneumonia with Progres...

    Laura Louizos

    Aspiration pneumonia is a significant risk for individuals with Progressive Supranuclear Palsy (PSP) due to difficulties in swallowing (dysphagia). Preventing aspiration pneumonia requires diligent care and attention to daily routines....

    Tips to Avoid Aspiration Pneumonia with Progres...

    Laura Louizos

    Aspiration pneumonia is a significant risk for individuals with Progressive Supranuclear Palsy (PSP) due to difficulties in swallowing (dysphagia). Preventing aspiration pneumonia requires diligent care and attention to daily routines....

1 of 4