As a neurologist, I have dealt with many chronic progressive neurodegenerative disease patients of various types and stages for a number of years yet, all of them had one thing in common-“good days and bad days.”
And boy did they let me know about it when they were not doing well! Except for Parkinson’s patients- I always found this group of patients to be so fascinating because THEY NEVER CALLED unless it was an emergency like falling ….
Usual calls would come from the ER because so and so had severe hallucinations and psychosis ( fortunately now we have a brand new FDA approved medication for this!!!)
Even when experiencing severe dyskenesias, incredible low blood pressure, or swallowing difficulties- They STILL NEVER CALLED-( even though I always encouraged all my patients to call me day or night). I think partly because of the feeling that has been so ingrained in so many that THERE is NOTHING that CAN be done but live with whatever discomfort or that the non -motor symptoms we have been feelings because until recently were so poorly defined and understood they were quickly dismissed by most not with Parkinson’s expertise.
This led me to believe that Parkinson’s patients were extremely stoic (generally a very nice group of people) and that except for the obvious motor symptoms which naturally progressed to end-stage dyskenesias ( motor fluctuations due to medicines)…they did not suffer same fate as most of my other chronically ill patients which seemed to be bound to changes in temperature, barometric pressures, fatigue etc. Boy, was I wrong!!! This is a case were observation of a subject or disease leads to obvious wrong conclusions!
No wonder it has taken us almost a century to realize that Parkinson’s is much more than a motor disease, that it actually affects the entire body and most organ systems! Fortunately, progress is beginning to take place clinically in understanding the silent symptoms of PD to help physicians develop treatment strategies to improve the life of those that suffer from Parkinson’s.
However, now that I have had the most incredible journey with PD in the last 8 years, I realized how little I as a Parkinson’s specialist really understood regarding the affects of the disease in my patients lives – ( aside from severity and suffering as they reached their end stage).
I think that is long overdue to start making our health professionals, researchers and law makers aware of our daily difficulties and struggles. Because there is a myth in society that Parkinson’s is NOT so bad because those that have early disease can still work and be productive (but no one sees behind the curtain except the care-partners) and once patients reach the convalescing stages- they are never to be seen or heard from again secluded in some forgotten nursing home or tucked away in a back room somewhere.
Through my years in practice, dealing with my grandmother’s Parkinsons’ and now my own, I have discovered that is not the motor problems that individuals are bother with the most- (bothers us / the family) but it is the non- motor symptoms which are invisible to most except to those of us in the field or to the ones that live with PD.
The non- motor symptoms like constipation, sleep problems, bladder issues, depression, fatigue and pain to name a few are the real culprits for our daily misery and discontent. Ironically, most of these have medical solutions so why are we not getting better?
Myth- Parkinson’s Fluctuates
Fact: Parkinson’s DOES NOT have MOTOR fluctuations unless dealing with dyskenesias (this only after long term use of medications), but does NOT have daily motor fluctuations early on in disease.
However, Parkinson’s NON-MOTOR symptoms CAN fluctuate on a daily basis and are affected by whether, other medical illnesses, sleep patterns, medications,constipation, as well as emotional state.
So, turns it out that Parkinson’s patients Do HAVE “good and bad days” too, especially when it concerns non-motor phenomena. However, is not being adequately reported thus not adequately treated! Therefore, we all need to take a more proactive role in discussing issues that might affect our non-motor symptoms as well as the symptoms themselves which often have treatment.
But, if you are experiencing a daily, weekly, or hourly MOTOR fluctuation- this is NOT NORMAL, nor part of the Parkinson’s spectrum. Parkinson’s disease is a chronically progressive neurodegenerative disease affecting the dopamine in the basal ganglia and as disease advances so does the loss of neurochemicals in the brain.
So, next time you you feel like you are getting worse…ask your self these questions?
is it sudden?
is it on one side of the body ? Weakness or numbness?
do I have headaches ?
do I have trouble seeing especially on one side?
loss of consciousness?
if you answered YES! To any of these you MUST consult your Physician Immediately …this could be a serious condition like a STroke, heart attack, seizure, tumor, infection, diabetes , high bold pressure or thyroid disease….
However, if you are simply having a “bad” day or having multiple frequent “bad” days then you need to start keeping diary as to what is triggering this to better discuss with your physician. Keep in mind things like sleep hygiene, weather patterns, diet, constipation, mood, medications, etc.
Soon you will be having more good days full of energy and sunshine !
Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com
may also contact me at