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There is a special balance in responses when someone tells you that they have a difficult diagnosis. It’s sort of a Goldie Locks thing on steroids. Some of the reactions are too hot. You are now the illness. Nothing you have done or will ever do will ever count again. You are now to be pitied. Some are too cold, “That’s nothing. I know someone who just takes a pill and everything is great.”
In thinking about a blog post this month I cannot help but think of Thanksgiving. It is so easy to think about the negatives of a Parkinson’s diagnosis for the person with PD and for their surrounding circle of family and friends. I want to stop and consider is there anything about a PD diagnosis that perhaps one can be thankful for or appreciate?
It is well known that exercise is beneficial therapy for those living with Parkinson’s disease. But in recent years, more varied kinds of physical activity are beginning to be researched and proven to help as well, and one of the most highly touted is dance. There are hundreds of dance programs for those in the Parkinson’s community throughout the world, but the headquarters for PD dance worldwide is the Dance for PD program in Brooklyn, New York.
One of the most common non-motor symptom of Parkinson’s disease – affecting an estimated 90% of PWPs – is a reduction in (or complete absence of) a sense of smell. The reduction is called “hyposmia” and the absence is “anosmia.” Often this symptom predates many others. This loss has the potential to significantly affect our quality of life. The inability to accurately detect odors in one’s environment can be inconvenient (if you can’t tell whether your clothes or your body parts need cleaning and deodorizing) or even dangerous (if you cannot smell a fire or a gas leak.) But a related loss that may perhaps have even more of an impact on one’s quality of life is a reduction in the sense of taste.
My Ddd was diagnosed with PD in 2019. As a family, we experienced many changes, especially him. One of the changes that surprised me the most was his taste in food changed. For example, my dad used to LOVE beer. We are from Cincinnati, so of course he loved beer. Since being diagnosed, the taste of beer has become chalky to him. Also some food now has no taste. Weirdly enough…some food tastes better to him now. Peaches and apples taste sweeter now.
Well that was fun! The 14th Annual Steady Strides, presented by Supernus Pharmaceuticals, was another great success. Our sponsors, contributors, volunteers and most notably, our Parkinson community, all came together to achieve every goal we set. The final numbers are not yet complete but we know we will meet or exceed our financial goal of $110,000. This means you can assured that we will continue our mission of Learning, Moving and Sharing through 2023.
How many of you wrote in a diary growing up? Journaling is very similar to keeping a diary but there are so many different types of journaling to explore! There are many benefits to journaling. It helps reduce stress, keeps your memory engaged, boosts your mood and strengthens your emotional functions (source).
The 18th annual Sunflower Rev It Up Symposium is happening on August 27th at The Oasis Golf and Conference Center in Loveland. This is an annual symposium sponsored by the University of Cincinnati Gardner Neuroscience Institute. The team is excited to be back in person this year. Contents of the symposium include up to date and useful information about Parkinson’s disease, the benefits of intense exercise, practical suggestions for living well with Parkinson’s disease. There will be a patient with PD to tell us their story that inspires all to live our best lives with or without Parkinson’s disease.
We had a blast June 25 at our fundraiser game with the Florence Y'alls! Special thanks to those who purchased tickets for the evening and participated in our split-the-pot! We had fun at your Margaritaville themed evening and we dressed for the occasion!
The Coronavirus pandemic has required that we all stay at home a lot. And it is hard to participate in a group activity such as an exercise class in your own home. But thanks to the internet, the world can seem a lot smaller than it actually is, and that closeness can make exercising at home a real option. There are a number of Parkinson’s-specific exercise instructors who charge for their online services (as is appropriate if they are not separately funded). But since people with PD have limited funds, I am going to mention only those that are free.
Dr. Johnna Devoto helps caregivers and PWPs find strategies for maintaining quality of life and live well with Parkinson’s disease. In this talk from our PD Edu series, Dr. Devoto helps caregivers create a plan for moving forward based on cognitive changes and mood disorders that may come into play down the road as you navigate a life with PD.
Support groups are a safe space where individuals can come together to share their stories and experiences with others. Support groups are focused around a common concern; in this case Parkinson's Disease. Support group content is driven by the folks who are attending the group with the assistance of a group facilitator.
Diagnosed at age 36, I am now 51 and have been living with Parkinson’s for 15 years. Fighting back is not easy. Parkinson’s is an unrelenting wind that blows from all directions. But as we resist, we are strengthened, and we work continually to retain what we can for as long as we are able and encourage others to do the same along the way.
