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Cautionary Advice

Eleven years ago, I lost the very foundation my life had been built on – my father. He was such a humble, smart, compassionate human being. Any potential good traits that others may see in me, are undoubtedly due to his influence in the first forty years of my life.

He had Parkinson’s disease, fairly late onset, years after my own diagnosis. But that was not his downfall in the end. He collapsed without warning; a massive, ruptured brain aneurysm claimed his life. A tragic ending to a life built on perseverance through hardships and ensuing success, a life of service to others, a life truly lived.

Normally I keep the thoughts and memories I have of my father close to my heart, his loss still remains too acute to discuss much. But I am sharing a bit of his experience in an effort to make a difference to someone else. His symptoms were not typical, he never experienced the headaches that an aneurysm would normally produce but if I look back were there some signs that could have triggered further investigation?

Over the preceding months, he had been experiencing some lightheadedness and syncopal episodes. These episodes seemed to be positional and in keeping with one of the nonmotor symptoms of this disease – orthostatic hypotension when your blood pressure drops when going to a standing position, causing lightheadedness, and feeling faint. That was what his neurologist thought, and the episodes were being watched with no further imaging studies recommended. And so, the aneurysm grew in silence until it made itself known, a devastating and irreversible outcome.

More likely than not, reasonable decisions were made based on the information given in my father’s case. The symptoms I described could have easily been due to a drop in blood pressure and in his situation the outcome was likely tragically unavoidable. Regardless this experience does bring one lesson to light –

Just because we have Parkinson’s disease does not mean we are immune to other illnesses.

Because Parkinson’s is such a pervasive disease and the list of nonmotor symptoms is so vast and vague at times, we may have a tendency to attribute much of what we experience to PD. Yet those same vague symptoms can be due to an entirely different process, something that may be innocuous or potentially insidious.

What does this mean? Should you be worried about every little change in your health status? Should every ache and pain result in a flurry of investigations and concern? Not at all. But at the same time, if there is a new symptom that you are particularly concerned about or unsure about, don’t simply dismiss it or automatically attribute it to Parkinson’s. Instead, do follow up with your primary care physician or your Parkinson’s specialist and allow them to investigate if needed.

Also imperative is to be aware of your general health, make sure you still follow preventative health measures through annual exams, screening blood work, mammograms or prostate exams, colon checks or any other tests that are recommended for your age. If you have any comorbid illnesses, then take the appropriate medications and follow the medical advice you are given.

You need to optimize your general health as Parkinson’s is challenging enough.

After such an immense loss, hindsight is neither helpful nor healing. And truthfully if I look at my father’s situation through my medical, logical lens, there really were very few details that should have triggered further investigation. On all fronts, from his side and that of his medical team, reasonable decisions were made. But as a daughter who still feels the acuteness of losing her father, I will always wonder, what if…

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