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April: Parkinson’s Disease Awareness Month Becoming Your Best Advocate

By Ramon A. Gil, M.D.

April: Parkinson’s Disease Awareness Month Becoming Your Best AdvocateVery few areas in neuroscience have seen the progress that in recent years the field of Parkinson’s Disease (PD) has experienced.

Because of this, it is more important than ever to increase our knowledge about (PD) and stay updated in new and improved treatment options. Whether you are the patient, the care partner, a relative or a friend, the more you understand PD and its treatment, the better the journey will be, as you will be able to recognize problems early on and you will be an active and educated participant in the treatment. Hard to believe, but most of us seen to be more familiarized with our cars and home improvements than with the concepts of motor complications, dyskinesias, dystonia, psychosis, neurogenic orthostatic hypotension, REM Sleep Behavior Disorder… all of which being common problems affecting PD patients.

This education should be not only for you, but for the medical community too. The following vignette illustrates why. Three months ago, we met J.R., a 78-year-old male patient, treated for PD for over 10 years.

During that period, J.R. and his family endured all sort of problems, not just with “his tremor”, but also side effects of the medications, which included confusion, delusions, hallucinations and other behavioral problems including impulsivity and changes in personality. His 51-year marriage was almost destroyed by this situation… After reviewing his case and examination, we determined that J.R. did NOT have PD. He is now off all medications, symptoms free and enjoying life again. His wife gave us the best gift of all as she said: “thank you for giving me my husband back.”

Here are a few points to ponder on and/or questions to ask to your doctors.
• How definitive is my diagnosis and how are we confirming it?
• Is a DAT scan always necessary to diagnose PD?
• How often and how easy it is for a DAT scan to be technically limited or misread? Can DAT scan differentiate PD from the so called “imitators” of PD?
• I have tremor in both hands, how can it be established that it is PD and not Essential Tremor (ET)?
• I am being treated with more than one drug for PD, however, my symp-
toms don’t seem to improve… Why?
• Levodopa remains the most effective symptomatic drug for PD. What are the advantages of the newer formulations over the standard IR preparations?
• Is there effective medical treatment for “early PD?”
• Who is a candidate for deep brain stimulation (DBS) as part of the treatment for PD? When or how early can surgery be performed to treat PD?
• “My medication does not last long enough. Is there something that can be done?”
• Is there scientific evidence to support the use of marijuana as treatment for PD?
• I have heard about “non motor symptoms of PD.” Which ones are the most common and are they treatable?

These are all valid points to consider reviewing, when applicable, with your treating physicians during your next visit. Remember, the most important goals in the treatment of PD are to optimize and maintain quality of life and functional status as we diminish the symptoms with minimal or no side effects. This is not always possible, but when the right treatment is initiated from the very beginning, or as early as possible, chances for a very good clinical course are much higher.

Don’t wait for “things to get better by themselves”… It is important to remember Albert Einstein’s quote: “The definition of insanity is doing the same thing over and over again but expecting different results.”

Ramon A. Gil, M.D.
– Diplomate American Board of Psychiatry and Neurology
– Diplomate American Board of Internal Medicine
– Former Clinical Associate National Parkinson Foundation
– Medical Director and Founder, Parkinson’s Disease
Treatment Center of SW FL

Parkinson’s Disease Treatment
Center of SW Florida
(941) 743-4987
4235 Kings Highway, Unit 102, Port Charlotte, FL 33980
1531 Tamiami Trail, Suite 702B, Venice, FL 34285
8931 Colonial Center Drive, Suite 401, Fort Myers, FL 33905

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