At crossroads with Parkinson’s?

A brain disorder that leads to stiffness, a lack of balance, and coordination, Parkinson’s need not be debilitating as early detection can help reduce complications that can shorten life expectancy, writes Rajeev K Gupta

Parkinson’s (PD) is a life-changing neurodegenerative illness with a pretty name. When my neurologist first told me that I might have Parkinson’s, I was rather amused and clueless. “But I never participated in boxing, Doc,” I wanted to tell him, “And my hands do not shake.” That was the sum total of my awareness of PD ……that you get this disease through repeated head injuries as in the case of Muhammad Ali, the boxer, or in old age as in the case of my neighbour with shaking hands. I was neither a boxer nor old. However, I kept quiet. ‘Never annoy a doctor, a teacher, or a policeman,’ is what our grandma advised. “This doctor needs treatment. I must consult another,” I murmured to myself.

It was only after my PD was confirmed by a Movement Disorder Specialist (a movement disorder specialist is a neurologist with additional training in Parkinson’s disease), I realised that the first neuro was smart to have diagnosed my PD in its early stage. It is not easy considering that there are no tests to confirm the disease and there are other diseases with similar symptoms. The diagnosis is mainly through clinical observation. I later learned that head injury is one of the less common causes of PD and that shaking, or tremors are not necessarily the defining symptoms.

In many cases, the dominant symptom is rigidity and slowness of movement that creeps in so slowly that you do not even realise that a debilitating neurological disease is taking charge of your life. It is weeks and months before you see a doctor and even then, you should be lucky to get the right diagnosis early enough in the disease cycle. Yet it is so important to get an early diagnosis. All the medical literature and doctors tell me is that the disease can be better managed if diagnosed early. When you disclose the diagnosis of this life-changing disease to your near and dear ones, the most common and difficult question to answer is “What is the cause?”. “Do you drink a lot,” asked one aunt looking at me suspiciously. The doctor’s explanation that the disease is mostly idiopathic (no definitive known cause) does not cut much ice with such aunts. They consider it as a meek attempt to hide something more sacrilegious such as excessive drinking, smoking or both. They keep looking at you suspiciously. One cannot blame the aunts. Even though there are an estimated ten million PD patients across the globe and 1,000 plus newly diagnosed cases per week in the US alone, there is little awareness about the disease. April is designated as World Parkinson’s Month and April 11 as World Parkinson’s Day. This helps in focusing efforts on increasing awareness about Parkinson’s Disease.

We may have old parents, grandparents, friends, spouse or even a potential young onset of Parkinson’s patient among us. Knowing that one in three hundred adults is statistically prone to be a PD patient, it is not very unlikely. Your awareness of leading symptoms of PD may lead to the right advice, early consultation and timely diagnosis and hence better management of the disease.

Acceptance & empathy

No patient wants to be pitied. In fact, most of the patients despise sympathy. All we ask for is acceptance. It is not our fault that we have awkward movements, involuntary twitching of limbs, blank facial expressions and saliva dripping from our mouths. We ourselves are embarrassed by all this and try to manage as best as we can. Many of us avoid socialising due to this. Your tacit acceptance and acknowledgement will help a long way in keeping the blues away and prevent us from isolating ourselves. Is it too much to ask?

Consideration in public places

Let us say you are standing in a queue just behind a PD patient. He is struggling to take out his credit card from his wallet. All you are expected to do is smile and wait. Show some patience. Your offer to help may be politely or bluntly refused depending on the temperament and mood of the person. You see, all PD patients or perhaps all the people with physical challenges need to constantly reassure themselves that they can manage their own tasks and are not dependent. This reassurance is important to their self-esteem, confidence and independence.

Respect that

If it is a safety concern as in the case of a person struggling or hesitating to step on the escalator, do offer your arm. If refused, you may still want to stay nearby till the risk is mitigated.

All this is not easy and needs a lot of patience, understanding, empathy and of course, awareness. All the patients facing a life-threatening or life-changing disease live in constant hope, the hope of a miracle or a cure or a new therapy that may relieve our pain. This is one of our coping mechanisms. Please do not puncture our hopes by telling us your horror stories.

For Parkinson’s too, a lot of research is going on, new lines of treatments are being tested, surgical interventions such as Deep Brain Stimulation are becoming more sophisticated and safer, making hundreds of patients functional and independent. These are costly interventions and out of reach for most patients. Some government subsidy or philanthropic trust to help such patients is urgently needed.
(The writer is a PD patient and author of the book Destination Unknown – My Journey with Parkinson’s.)