“Everybody does have a book in them, but in most cases that's where it should stay.”
The above quote (which I love) aside, I may someday write a book entitled, "What I Wish I Knew About PD: I Stumbled So You Won't Fall."
One chapter might be, "What the hell is Thermoregulatory Dysfuntion or Why I am I Always Freezing or About to Pass Out." Yes, Thermoregulatory Dysfuntion (the inability to adjust to hot or cold weather) is a thing with PD Patients that gets worse as the disease progresses. I am always shivering outside in the winter. This summer at Coney Island, my son and friends admitted it was hot, but nothing out of the ordinary for July. I on the other hand, had to seek out shade because I was on the verge of passing out! So, In Jamaica, I went from the water to a lounge chair under an umbrella. Tanning is for the foolhardy anyway. This winter, I purchased two pair of lined pants, ski gloves, several sweaters, vests and hats. The result: I was almost comfortable!
Chapter 2 will be, "How to Make Your Dentist Rich." Last week, I slammed my fist into the arm of a dental chair in time with the chant, "FUCK-FUCK FUCK!" I then realized that my dentist was still in the room and muttered, "Sorry Charlie..." (We have known each other for over 25 years, so he cuts me some slack.) I had split another tooth in half and had to schedule dental surgery for my third implant since my PD diagnosis. Yes, there is a correlation between PD and dental issues. These are most likely caused by a lack of saliva and teeth grinding exacerbated by Dystonia.
There will be several chapters on medication and side effects such as hypersexuality (don't ask). At least one chapter on community building and getting involved as working with the Parkinson's Foundation has really helped me through some tough times.
I have always dreamed of spending Spring, Summer and Fall in Brooklyn and Winter in California walking on the beach with my Wife, Son and Grandchildren. (Hint-hint Ocean!) In this dream, I am never wearing dentures, sweating, shivering or using a cane!
With the above in mind, I jumped at the chance to contribute to the article below:
I am proud to be one of the many authors:
Danique L. M. Radder, Nienke M. de Vries, Niels P. Riksen, Sarah J. Diamond, Ditza Gross, Daniel R. Gold, John Heesakkers, Emily Henderson, Adrianus L. A. Hommel, Herma H. Lennaerts, Jane Buschk, Ray E. Dorsey, John Andrejack and Bastiaan R. Bloem
Abstract (Simplified):Parkinson's Disease is a progressive, complex disorder that can affect many areas of a patients health and treating this disease requires a team approach. When treating PD many people think of only movement disorders specialists and/or PD nurses. While this is true, a holistic approach also must include all of the patients health care professionals and the patient herself.
Some medical professionals who might be included in this team are gastroenterologist, pulmonologist, neuro-ophthalmologist, urologist, geriatrician/elderly care physician, palliative care specialist and dentists.
This Article Suggests A Patient Care Team Should Look Like This:
A Personal Note:Reoccurring (three times) frozen shoulder was one of the my first early warning signs and I wish that my orthopedist knew more about PD. He is a great Doctor with an excellent bedside manner who is well respected in his field. I continue to recommend him to friends and coworkers. He sent me to a neurologist, but was not treating me as a member of team of health care professionals. I only wish that I could get the time, sick days and co-payments that I spent on physical therapy back!
My dentist was the one who finally convinced me to seek out a second opinion and for that I am eternally grateful. Thank you Charlie! If you live in NYC call 212 473-2343 for an appointment.
My Dental IssuesSince my diagnosis, I have had two dental implants and a third is scheduled! This is one of the hidden costs of PD. Why is this? Theories include a lack of saliva, which would normally breakdown sugar in a healthy patient and muscle tightness (Dystonia) which in turn causes teeth grinding.
From the Article
"In a study published in 2012, researchers examined 90 people with PD and found
that they had an average of four additional missing teeth per person compared to their age-matched peers"
A Conclusion of Sorts :I once read an article in my field (Student Affairs) which indicated that over 90% of published Student Affairs articles were never cited in other research studies! Of the 10% of the articles that were, 90% were cited by the author of the original article! I cannot think of what is worse, the fact that this articles was published or that I bothered to read it! At this risk of falling into this same trap, I will end this post by quoting myself,
"Finally,with the knowledge gained by working with multiple healthcare providers, patients can become better self-advocates and actively participate in the care delivered by the multidisciplinary
team. Healthcare professionals need to get together with their patients and discuss treatment options. So, have a cup of coffee together and save a seat at the table for us!"