14 May 2024

Parkinson's Awareness

A Parkinson's organization we haven't worked with contacted us last month (April is Parkinson's Awareness Month) and asked us to post on social media to help raise awareness of the disease and ask for monetary contributions to the organization.

We have actively supported a few movement disorder organizations during the 19 years of our glorious marriage, never knowing one day we would be dependent upoon a couple of them. I hope one day to be able to create new snowflake patterns for a new PDF booklet to raise money for organizations such as the Michael J. Fox Foundation and the Davis Phinney Foundation. Right now though, I'm struggling to keep my head above the pool of salt water tears, so that particular dream is on temporary hold.

The organization we had not heard of until they contacted us provided a template for a social media post. (Actually, they provided four templates for different roles: patient, caregiver, bereaved family member and health professional.) At the time, I thought it might be a good idea to share our story to help raise awareness. Not to raise money, but to help people understand what it's like to live with this disease. I saved the email and wrote a lengthy blog post I have not yet published because I'm not sure I want to reveal everything I wrote.

Now I'm cleaning out my email, and I came across the templates again. I had to do some major rewriting (that alone made me wonder if perhaps I should volunteer my writing and editorial services to the organization in question). I still haven't quite decided if I should actually publish this because it wasn't structured well, it didn't flow smoothly, and I can do a much better job on my own without the use of a template. I decided to go ahead and fill in the blanks on the (rewritten) template below so I can delete the email. The italics are where I replaced the name of the organization we'd not worked with. If you are reading this blog post, that means I finally hit the orange publish button. Probably during a writer's cramp moment. Or following yet another sleepless night.

Five years ago, my precious husband was diagnosed with Parkinson's. I am now one of nearly 40 million caregivers across the United States.

Living with Parkinson's is like living with a hungry thief who robs us daily of nuggets of life, passion, and sanity, slowly devouring us, piece by piece, day by day. The loss never stops. It just keeps getting worse. Lizard has endured the loss of almost everything he loves, his independence, his ability to think clearly, his balance, his ability to sleep, and now, his grasp on reality. Currently, there is no cure for Parkinson's.

The hardest part of being a caregiver is knowing there is nothing I can do to make it better. There is nothing I can do to relieve his symptoms. There is nothing I can do anymore to slow the progression of this vicious disease. The number of people living with movement disorders is skyrocketing.

Our neurologist, endocrinologist, ophthalmologist and general practitioner have been a lifeline for us. Our family and friends who understand what this brutal disease does help us get through daily disappointments, surprises and challenges. The Michael J. Fox Foundation and the Davis Phinney Foundation (and many other Parkinson's organizations) provide Zoom seminars and gab sessions, as well as YouTube videos, we can turn to for support or when we suddenly are faced with a new symptom and don't know how to keep going.

All of our friends, loved ones and health professionals walk alongside us because we have been so deeply impacted by this disease. Although Parkinson's feels isolating and debilitating, we are surviving with their help, and we are so grateful for their love and support.

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