Paul and I will be participating in our 9th annual Parkinson’s Foundation Moving Day Tampa Bay on year it is on April 27, 2023 at Al Lopez Park in Tampa as we continue to fight this dreadful disease every day. Many of you who have followed Paul’s journey over the years and we thank you for your support and encouragement. Living with Parkinson’s Disease gets more and more challenging as the days, months and years go by and 2023 was no exception. Just a few days in, we faced the first challenge. As you know from my letters from previous years, Paul and I were avid cyclists. On January 12, Paul had a bike crash that led to a night in the hospital as a precautionary measure. The timing couldn’t have been worse. The crash occurred 1 week before Paul was to enter a phase 3 clinical trial for a new medicine. The medicine in this trial came with HOPE and we were concerned he might get disqualified due to the crash. But HOPE stayed alive and Paul was accepted into the trial. We were off our bikes for about a month while Paul’s bumps and bruises healed but then got back on our bikes and were fully committed to our fitness regime. A family trip to the Smoky Mountains in April was a fun-filled adventurous week. The clinical trial wrapped up in July. Then came August and Parkinson’s Disease decided it was time to challenge Paul’s balance and vision. We had to make the decision to give up our bikes. In Paul’s words, “I can get through life without bike riding but I need to be able to walk.” So we now find ourselves out the door at 5:15AM every morning and walk 3 to 5 miles before balance yoga, some free weights and a general fitness exercise routine.

A little more on the clinical trial as it keeps our HOPE alive. The drug, Buntanetap, has the potential to improve both cognition and motor functions by protecting nerve cells in the brain from dying in patients with PD. Paul had a 66% chance to get the “real” drug versus placebo in this study. Although we still do not know for sure if Paul had the real med (or as we are now calling it, HOPIUM) or placebo, he did very well during the study. The trial officially ended data collection in early Dec 2023. Our HOPE, the data review proves the expected outcome and the study drug moves into the open label phase. Paul would automatically qualify for this phase as the drug winds its way through the FDA. Fingers crossed and prayers said that this will happen soon!

Every day I witness the assault Parkinson’s Disease is having on the love of my life so I remain committed to doing my part to end this neurodegenerative nightmare of a disease which is why I am fundraising again for the Parkinson’s Foundation. In case you wonder, here are a few reasons why:
1. They fund research that can lead to improved treatments, better care, and HOPEfully a cure
2. They fund community programs like pdLIFE in Tampa that focus on the quality of life for those afflicted with this God-awful disease
3. They provide access to information and resources to all people living with Parkinson’s, care partners and their families
4. They provide education for healthcare professionals

Again this year, I will captain Paul’s Peloton with a fundraising goal of $10,000. As you read through this appeal for your support (aka your money), I HOPE it inspires you to join Paul’s Peloton and donate but also remember that your health is your wealth. Please check out our pictures on our team page and my personal page by clicking on the link below. Just click on the DONATE button next to my name, Cheryl Avery. Thank you in advance for your generosity. And PLEASE GET MOVING, YOUR HEALTH DEPENDS ON IT!