Musings of a Parkinson’s Night Owl: By Maria De Leon

“Every Renaissance comes to the world with a cry, the cry of the human spirit to be free…” Anne Sullivan Macy

 

The other day as I stayed up half the night like most of us with PD tend to do, I was too tired to read, or write and too restless to lie quietly in the dark. I decided to make my way to the Living room and surf the T.V. channels. After a few minutes, I stopped as I recognized an old movie which I had not seen since medical school “Lorenzo’s oil.” A movie starring Susan Sarandon (for which she won an Oscar) and nick molten about a child who develops a neurological illness known as adrenoluekodyatrophy. This Terrible condition occurs only in boys because is x-linked causing behavioral problems, blindness, deafness and eventually death. As I began to watch a wave of emotions took over me realizing how long it had been since I first saw this movie trying to remember my first impressions and how different they probably were from now having had the opportunity to treat many similar patients. Recalling my last little boy whom I diagnosed and the sadness and hopelessness i felt as I saw him drift into darkness and eventually succumb to death. Remembering the pain, anguish, and despair her mom felt upon confirming the diagnosis, never once remembering that movie.

Now as a seasoned neurologists, mother, and patient I found myself being completely enraged at that mother’s behavior. Wondering what I would have counseled if I were the attending physician on that particular case and weighing my options as a mom and patient. Surprisingly my decisions would have all led to the same path – let the boy die with dignity since he suffered for at least 3 years as he descended deeper into a coma only to slowly come out after years of seizures and suffering regaining some hearing and vision but remaining quadriplegic and bed bound for life. I wonder what he would have said about his life. The lack of choice in the matter. In the end, I wonder if he would have said it was a meaningful life. of course the fact that he survived such ordeal when he was aspirating and suffering asphyxiation continuously for years speaks volumes to the strength and power of the human spirit and to the  fact that life is not in our hands but that of our God.

The parents life revolved around the illness of their son from the moment of his diagnosis- the first rule of living with a chronically ill patient is not to make the disease the center of life. This is giving power and admitting it is stronger than us.  How often we as caregivers make life decisions based on denial or guilt? Sometimes we have to learn to let go and not stop living ourselves. We as caregivers are just as important as the patient. This does not mean we abandon our responsibilities or wash our hands of it rather we must find a way to maintain our own health, goals, dreams in spite of another’s need for our complete attention. We don’t refuse help from others or alienate ourselves from the world as this mom did. Important not to neglect relationships like marriage. Other children, siblings and friends as this couple did.

I am afraid too often we think we are invincible or too proud to let others lend a hand.

Plus, in dealing with any chronic illness we have to avail ourselves of an entire medical team especially if we want to change the science. As I have written before respect is essential for a good patient- physician relationship. Both parties are equally important to advancing knowledge and science of any disease. Anytime one party thinks they can work alone will only truncate progress. This is what unfortunately happened. Although the parents discovery of “Lorenzo’s Oil” was a major breakthrough because it did not go through proper channels of being tested within the confines of medical science, the treatment has mostly fallen into oblivion and rarely discussed in any medical settings due to the controversy and animosity it created among parents of patients with similar disease that were desperate for cure as we are now with PD an the neurological community who was painted as insensitive and uncaring to the needs of their patients.

Remember the saying never bite the hand that feeds you…doctors and neuroscientist have the scientific knowledge and experience of a thousand patients we only have one – ourselves or our loved ones. However, by working together we can fill in the gaps. So let’s not hastily take non- recommended treatments without discussing with our physician’s because if truly beneficial if done outside the confines of scientific methodology few people will reap the benefit as has been the case of the treatment with this oil which according to small studies if used early on in this disease can halt its progression.

This year let’s make waves by working together for a cure!

 

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