By Samuel

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Let me start by stating, I am neither a doctor or in any way remotely attached or trained in any of the related medical fields, but I write about Parkinson’s Disease purely from the perspective of my own experience plus knowledge gained through my interaction with my fellow sufferers whom I meet with at our weekly workshop (support group). Parkinson’s disease is not openly discussed, I believe, because it is commonly associated, quite correctly, as the beginning of the end (Alzheimer’s disease/ Senile Dementia) as well as the limited knowledge and/or exposure/understanding that it exhibits. It is a progressive degenerative disease affecting the brain, the whole sensory nervous system, through memory loss and other cognitive functions and/or dysfunctions.  

In my opinion, the World Health Authorities and Governments (Western, Eastern, Southern and Northern) do not do near enough to make the masses aware of this deliberating condition. They pay scant regard to it (my personal experience again). In my part of the world, it is mostly ignored as their concentration is on the more glamorous diseases, such as High Blood Pressure, Diabetes and Aids, etc., which is very noble of them, but I and my fellow sufferers would like to see more being done. In support of the statement I have just made, I believe that currently the support group I attend is the only one that has operated in Durban or the province of KwaZulu-Natal, or even South Africa. Our Branch, for registry, is linked to the Parkinson’s Centre in India. They supply us with our materials for our meetings, especially the exercises we are taught and perform at these meetings. 

In my experience and the research I have conducted, there are thousands, no millions and millions of people, rich, poor, black, white, Christians, Muslims,  Hindi, young old plus all ages, shapes and sizes who live with this disease, and yet, without even knowing they have it. I will proceed by sharing more of my knowledge gained while engaging and talking to other people. I have discovered they have lived with similar conditions like I have lived through, and also not knowing that these are indicators that they needed to get medical attention before it is too late. 

It all began when I visited my physician and spoke about suffering from regular spells of vertigo. I still joked about it, saying that I do not consume alcohol yet I stagger around like a drunkard. After an examination, he called an ENT Specialist to book an appointment for me to be further examined. The reason was that, if the crystals in my ears, which help with balance, were out of sync, he could perform corrective treatment using the Epley’s Manoeuvre. After a couple of tests conducted, he announced that my problem was in the brain and I needed to be examined by a neurologist. No one wants to hear something like this, as the mind immediately associates that you have a psychological disorder (you may be going mad). Nonetheless, contact was made and an appointment was set up to be examined by a Neurologist. Both, the ENT Specialist and the Neurologist had their practices at the hospital close to my home, but also one that had a good reputation.  I was also grateful that I was on a Medical Aid Scheme as they bore all the costs that were and will still be incurred. Due to privacy laws I cannot divulge the name of the medical aid, but if I could, I would use this platform to praise them for the excellent service they have afforded me.

The Neurologist did a few tests and stated that I needed to undergo an MRI Scan (magnetic resonance imaging procedure) as soon as possible, but to do that, I needed to be booked in as a patient. This was done and I had to return the following morning, book into the hospital, keeping in mind that I would be a patient for several days. The afternoon of the day I was admitted, I was wheeled to the MRI theatre where the procedure was executed. Late that afternoon, I had a visit from the neurologist, who was now accompanied by a cardiologist. No mincing of words, I was informed that I had had a Stroke at the midbrain, which had damaged the part of my brain that produces dopamine (the chemical that the brain produces to feed the nervous system for proper functioning. The lack of this chemical causes the brain and the nerves to malfunction, thus resulting in my imbalance, and later realising that there were other related symptoms which I had ignored. When I had the stroke, it could not be determined. The doctors informed me that this is the experience with many of their patients. 

With time, looking back, it dawned on me that there were signs, evidently over approximately five years, which I wasn’t aware of that they were indicators of me having had a mild stroke/s. One of the early signs for me was when, a few years back, suddenly in my church attendance, I was unable to keep my balance when we were called to stand up to pray. Praying with closed eyes was always viewed as a sign of reverence for God’s presence. With my eyes closed, I was losing balance and had to quickly open them and look at the floor to regain my spatial cognition for balance. The body’s sensory systems give it a framework as to where each body part is (hands, feet, head, etc.) within its surrounding space. In people without Parkinson’s, it retains this and the person is able to function naturally. Let me use an example here. Walking, once developed, is a natural bodily function fully controlled to direction, speed, stride and importantly balance. To me and fellow sufferers, we need to “plan” our walking taking into consideration all that has just been stated. Our walking can be erratic, robotic type movements and difficult to control. Balance is very important in walking as the body mass distribution is shifted from foot to foot, dependent on which foot is in contact with the surface being transverse. Diagnostic methods for verification if the patient has Parkinson’s based on seeing one or several of these symptoms displayed or tell-tale signs in the person/s being tested. That was my personal experience. 

Had I known then what I know now, and with proper treatment, I would not have regressed to the stage I am currently living at right now. This, my dear friend, if I can call you that, is the primary reason for me putting out this post, this information. If, in reading this, a person or persons can seek help early, why suffer unnecessarily? To cement this thought, not too long ago, I was invited by a Pastor, who’s also a relative and a friend, to speak about Parkinson’s disease at their parish in Wentworth, a suburb of Durban. He had heard me talking about it at a family function, gave me the invitation, which I accepted readily. During my presentation, two attendees stood up, and said they could identify with the symptoms I’ve discussed as they’ve experienced the same signs. Listening to their stories and watching their actions, we concluded that they had possibly also had a stroke/or strokes and needed to seek medical help as soon as possible. Prior to concluding the meeting, as was customary, we concluded in prayer and prayed specifically for God’s guidance and intervention for them. 

Besides medicines, crutches, wheelchairs and other aids used to assist, a CAREGIVER is an essential helper to us sufferers. For some, the cost of hiring a caregiver can be burdensome, whereas many, like myself, are dependent on a family member (mostly the spouse). Some countries, in recognition of such necessary arrangements, assist with the cost even to the extent where the spouse is given a stipend for service rendered. Sadly, not so in South Africa. 

People, whosoever you are in whatsoever county you reside in, I am reaching out to you to talk about Parkinson’s disease. Let’s not ignore it, but in talking, in discussing it we can make more people aware of its traits and in so doing be a help for someone out there who may not have access to medical facilities such as hospitals, clinics and medical assistance in any form or shape. Let’s not remain silent, because then our silence is a silent killer of loved ones, friends, and people we cross paths with in our everyday lives. 

Golden question, “Am I my brother/sister’s keeper?” I believe that most religions agree on this one statement – That we help one another as fellow human beings, not out of pity or for some form of gain, but purely out of love. GOD IS LOVE.