Unraveling the Mystery Surrounding Failed Diagnosis & Treatment of Non- motor Parkinson’s Symptoms By Maria De León

“However, difficult life may seem, there is ALWAYS something you can DO & Succeed at.” Stephen Hawking

I know that many people, including myself, often can get extremely frustrated with ourselves not only for having to deal with a myriad of symptoms which often times wreak havoc in our lives; but at times we feel betrayed by our own physicians who appear impervious to our own misgivings and difficulties.

As a former physician and now chronically ill patient, I have been thinking about these issues more often lately as my disease, rather general health, has seemed to spiral downward at a faster rate. I have been trying to reconcile my own feelings of disappointment with the turn of events in regards to the complexity of my own health problems which have been compounded recently by a feeling of disillusionment with some of my caregivers.

In order to come up with sensible explanations to my sudden disenchantment with my friends, colleagues, and care providers, I had to step back from myself and try to see things objectively not an easy thing to do – I assure you.

I am most objective when I am in physician mode, so I reverted to this role and considered how I as a doctor would treat me as a patient. The fact is that all my physicians are doing EXACTLY, for the most part, what I as a doctor would do!

So, why have I felt of late that they don’t seem to care or get what I am going through?
I have heard this over and over from many of you, doctors are just not spending time talking to us about the important issues which seem to be running our lives and robbing our happiness and drying our families joy?

I am certain that at times some of my patients might have felt this as well and might have sought other physician’s care. Yet, I assure you that every patient’s well-being was at top of my list.
So why the seeming disconnect? With them and now with me- as a patient?
Well, let’s take a look at this illness a bit. Although in existence for centuries, Parkinson’s as we know it was given a formal name only a century ago. However, it took another 60 years for scientists to discover the implication of a chemical known as dopamine. From that time on until very recently the main treatment consisted only in replacing this wonderful chemical without which we can’t move, function, or even think straight.

With the advent of levodopa, patients could again move, think, dream, and enjoy life for a while until dyskinesias (uncontrolled involuntary movements) began and/or finally they succumbed to a bedridden life unable to swallow or barely move. We as doctors had completely changed the course of the disease. This was a miracle! Then came the side effects. So, I recall spending the majority of our time trying to manage dyskenesias -breaking medication doses into 1/2; 1/4 and asking patients at times to take these medications every hour around the clock- pure insanity! All in hopes of provide smoother delivery to minimize ‘off’ states.

We had no time to notice anything else. Like in a battle field where there are thousands of wounded soldiers all clamoring to be saved, the foremost importance is making sure they survive even if it means amputating some parts to salvage the whole. So we have spent the last several decades making sure people live and survive by trying to prevent falls, being bed ridden, frozen, drowning on their own saliva or having pneumonia.

No one really complained since like the movie Awakenings everyone seemed happy to be able to move once more. But life was never perfect there were other problems we physicians as well as patients were aware of but with lack of treatments for these we managed the best we could. And in reality since the majority of patients we were treating at the time seemed to be elderly (the older I get this age distinction seems to become hazier), most in fact died of other medical causes because they never had time to go through all the stages, this being a slowly progressive disease developing over 30 years’ time.

So now that we have given patients a better quality of life with the myriad of new medications and surgical treatments available to us, we realize that the care is not perfect. This is compounded by the fact that we appear to be having increased incidence in younger onset PD (this still remains to be determined). Now that the life threatening issues have been controlled for the most part we have a grand task of getting people to not just survive but actually thrive once more.

This is where we currently stand, as physicians we are just beginning to grasp the challenge of giving a person back their wholeness while the patient (me and you) realizing the enormity of our deficits want to feel whole instantaneously.
Yet, none of us has a magic one and medicine is still one step at a time (moving at times at the pace of a snails crawl) following the creed of “do no harm” first.
So I realized that instead of being frustrated I should be grateful that 12 years into a disease I am fully independent and capable of having a full life and rather than thinking that our physicians are not caring or acting fast enough for our satisfaction we should find ways to help them help us.

So, now that the mud is beginning to settle, we are getting a clearer picture of the complexity that is PD. The good news is that the majority of non-motor symptoms actually have treatments. The bad news is that we can’t fix all at one time. This means picking your battles (the 3 most important at a time) and tackling one by one. Stay in constant communication with your physician, means regular appointments every 3 months- more often if needed. Write down your problems, look for patterns, ask questions, have a stake in your illness- this is a race not a sprint. This requires a change in life style. Just because we take some pills we can’t expect to be better without us putting some work as well- like stretching, moving, sleeping well, watching what we eat, and staying mentally active. Believe you me it’s a lot of work on a daily basis, but if you want to be around ‘til the next breakthrough in science this is what we have to do.

After pondering these things, I feel much better about my care and my life. I hope this helps you as well. There is a big bright future ahead don’t give up know – give your doctors a chance – most really do care but are simply overwhelmed at the scale of the iceberg ahead. Help them chip at it for your own well-being.

@Copyright2018
all rights reserved by Maria De Leon

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