Recently I watched the movie “The Theory of Everything” in awe as so many of you must have. I was so delighted to see this film get nominated for so many awards and rightly so. The entire movie crew did a superb job bringing to light not only the life of this great mind of the 21st century but also poignantly detailing the conflicts that both a person with chronic neurological disease faces but more importantly the sacrifice, commitment and love required to care for someone in this position on a daily basis.
Many people have wondered and asked why Professor Hawking has been so fortunate to live to his present age, well into his 70’s, when most people with ALS typically live only on average of 2-5 years.
Some have attributed to the fact that he has a brilliant mind, others to having an atypical slower variant of the disease.
But, I say that the real reason perhaps has not much to do with the disease but with the extraordinary care that he receives.
This is a testament to the love and devotion of his care partners.
The thing that makes people with this illness succumb to the disease is the weakening of breathing and swallowing muscles which eventually compromise the person’s ability to oxygenate and to maintain nutrition causing a total collapse of the body. These are precisely the same reasons people with PD eventually die. However, if we provide support and assistance to allow someone to continue breathing artificially, the body and brain can continue to survive.
When I was in medical school the neurology department at Hahnemann University which is now Drexel University College of medicine had a large ALS facility. Patients there had been living with ALS like Mr. Hawking for decades.
We don’t often hear this because so few clinics exist like this and most ALS patients choose not to live completely locked in a nonfunctioning body. But perhaps we need to focus these patients’ attention on how someone can still have a prolific and meaningful life despite severe disability as long as there are willing care partners. This thought got me thinking about living with Parkinson’s disease. Although, some would claim that the severity of disease of PD cannot compare to that of ALS, yet as Parkinson’s progresses patients can also become trapped in their bodies. It is only through the unyielding care from the care partners that we as PD patients and those suffering from ALS can have a more meaningful existence.
However, this care can come at a price as was shown in the movie portraying the life of physicist extraordinaire. Divorce rates are much higher than general population in those suffering from chronic neurological disease. Love fades when the spouse is forced to be the care partner and sole provider. Caregivers should not go at it alone. It is a tremendous burden for anyone person to bear having someone else depend on them for All of their needs 24/7. Children do, but they eventually grow up and become independent. However a person living with chronic progressive illness the reverse is true- independence decreases as dependency increases. Worst of all is that this often happens as the spouse’s or partner’s strength begins to diminish and aging problems set in. It is honorable to want to take care of your loved one initially; but if not careful to take time to grow as a person independent of patient care a downfall is inevitable and love and loyalty can turn into frustration and resentment as we saw happening with Stephen’s wife after years of devotion.
To avoid marital pitfalls and continue the love that helps the patients’ thrive and aspire to continue fighting as well as having new goals and dreams despite their illness is to recruit others to help early on in the disease- it truly takes a village. So yes, we as Parkinson’s patients can continue to thrive well after disability has set in and our bodies no longer cooperate as long as we have someone preferably a team rooting for us, helping us get through hurdles of physical impediments willing to push us, lift us and feed us if necessary. Otherwise, we too like the majority of ALS patients who succumb to disease will wither away and call upon death much earlier than our potentials demand. By not allowing our destinies to be fulfilled, we may deprive the world of immeasurable hidden talent that only the PD patient possess which may manifest as the next masterpiece or brilliant insight which could lead to the next big discovery in the world of neuroscience. After all, as Stephen Hawking said: “where there is life there is hope.”