Giving Forward 2022

Posted: December 1, 2022
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We want to share the story of a very special constituent of ours – if you ever join our Round Table support groups for people with Parkinson’s and their caregivers, and our Mindfulness Focused Groups, you might even know him! Since he showed up at his first virtual support group over a year ago, Lloyd has truly blossomed, and he was kind enough to share his story with us.

On September 4, 2020, I had an appointment with a neurologist. I had made the appointment on the suggestion of my chiropractor. His sessions involved a deep tissue massage. During the last massage, he felt an internal tremor in my body and told me I should see a neurologist.

And so, my journey began…After the neurologist examined me, I asked him for a diagnosis. He said that he thought I had Parkinson’s. I remember the dread that I felt – it couldn’t be.

But two months later it was confirmed by a DaTscan. For the next several months, I felt a deep and soul-wrenching depression unlike I had ever felt before, partly due to the diagnosis but mostly due to Parkinson's depletion of dopamine. I’m a comic improv performer, and although all venues were closed due to the pandemic, I could not envision myself ever performing again.

I did a lot of crying. Add to that new waves of anxiety and I had to stop working and go on temporary disability. My niece suggested that I find a Parkinson’s support group; some place where I could commiserate with others. Sometime in the summer of 2021, almost a year after the diagnosis, I saw a notice for something called a PRO Round Table Meeting. I had attended a couple of Parkinson’s support groups during the year outside of PRO that I hadn’t enjoyed.

But I figured -- what have I got to lose?

This group was different. I felt immediately comfortable because the meeting’s facilitator, Jo Rosen, knew how to run a meeting. I watched as she offered encouragement and advice based on her years of experience. When it was my turn to talk, I just cried.

In that first meeting, Jo offered me two important Parkinson’s words of wisdom:

1) Parkinson’s is not a death sentence; and

2) Parkinson’s progression is different for everyone – meaning some of the symptoms I feared the most might never occur for me.

I’m not sure that I fully believed her but it was still good to hear. Jo saw my pain and invited me to call her the next day. That call changed my life. She introduced me to Roger Moore, a medical hypnotherapist and a member of PRO’s Wellness Village Resource Directory.

Roger Moore was the first therapist who helped me get control of my anxiety. Subsequently, I started to attend all of the Parkinson’s Resource Organization virtual meetings. At one Village Meeting, Dr. Maryam Bakhtiyari, another Wellness Villager, a dentist who specializes in Functional Jaw Orthopedics to correct sleep apnea, spoke about her practice. I became a patient soon after and I now sleep soundly.

During another appointment, I was so depressed that I broke down. She referred me to a neurologist friend of hers. That doctor changed my Parkinson’s prescription. Two weeks later I woke up, and for the first time in two years, I felt OK – ready to live my life as a person with Parkinson’s. The effects of PRO are cascading.

If Lloyd’s story touched you, please consider making a tax-deductible year end donation to Parkinson’s Resource Organization to fund the programs and services that helped Lloyd navigate his new diagnosis – programs like our wide range of support groups for people with Parkinson’s and caregivers, one-on-one consultations, Wellness Village Resource Directory, our monthly Newsworthy Notes newsletter, and so much more!

The cost for PRO to put on ONE Round Table Meeting – like the meeting Lloyd first attended – is $642. With 15+ unique support groups a month (and growing!), you can imagine how quickly the cost adds up. Thank you for considering Parkinson’s Resource Organization for your charitable giving this holiday season. To help Lloyd, and so many like him, access the life-changing resources we provide at Parkinson’s Resource Organization, visit ParkinsonsonsResource.org/GivingForward2022.