Joshua Wasike, 56, was diagnosed with Parkinson’s Disease – a progressive nervous system disorder that affects movement- in 2017. The diagnosis came with the promise that the disease would only get worse.
He shared his story with Sunday Magazine:
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In 2001, I was battling high blood pressure, diabetes and lower back pain. As an electrician whose projects needed agility, I was already having a bad enough time without the assertion by Kenyatta National Hospital’s doctors that I had a spinal disease.
I was learning to manage my new reality when I was involved in an accident in February 2017. I underwent a surgery at a hospital in Mombasa and left not knowing that the accident had triggered a condition I had harbored for a long time. From that time, I started experiencing mouth and hand tremors. Though I had experienced slurred speech for many years, my speech difficulties intensified after the accident.
I checked into Coast Neurology Centre a few months later where medics performed tests that revealed I was suffering from Parkinson’s disease. They explained that the nervous system disorder had started with the tremors and warned that it could affect my movement as days went by. I was disturbed when doctors said my disease couldn’t be treated and that I would just have to manage it. The thought that I would have to depend on other people scared me. At home, my wife and two daughters were shocked when they learnt that I had been diagnosed with Parkinson’s disease. They kept wondering what would happen when I became too sick to fend for them.
True to the doctor’s pronouncement, my health has been deteriorating from the time I was diagnosed with Parkinson’s disease. Today, I experience stiffness in one on my legs which makes it difficult for me to walk until I stop and try to straighten it. Because of this, I have to board a matatu to work a few kilometres away, a distance I used to cover on foot before my symptoms worsened.
Sensitive nose
There are days I experience severe fatigue and weakness that it becomes difficult to even get out of bed. Again, I find strong perfumes and any other strong smells very repulsive. I also find it strange that I no longer enjoy the sweet aroma of food. Whenever my wife is cooking, I can’t keep her company as I used to before because I vomit when I smell the food. These days, I also have swallowing problems and I try as much as possible to eat lots of liquid foods.
A day at a time
I manage my condition by adhering to strict medication which involves taking one tablet three times a day, apart from monthly sessions at the clinic to manage my high blood pressure and diabetes. The tablets for cost me Sh150 a day. Sometimes I lack money to buy the drugs and on those days, I become highly irritable, shake a lot and basically experience all the other symptoms at a higher magnitude. My thinking process also gets distorted and I take long to process whatever people tell me. It scares me that my life is hinged on drugs, failure to which I lose control of my muscles, my movements, and worse, my minds and my thought process.
All the visible symptoms aside, I hate the stigma I have to deal with. I cringe when people give me a sympathetic look whenever I have problem getting words out of my mouth, when I am having the uncontrollable tremors, when I walk with a rigid posture without swaying hands and when my legs go stiff suddenly and I can’t walk. It gets worse when people who don’t know anything about the disease draw their own conclusions like witchcraft, curses, drunkenness or some deadly disease. I am glad that my family understands me and gives me all the support I need.
I am also thankful for the Parkinson’s Support Group in Mombasa. There are about 40 of us distributed all over the county. There are smaller groups in Nairobi and Kisumu. Our sponsor, Jared Okeno, who is a lab technologist, meets the group every second Saturday of the month to ensure that all of us are adhering to our treatment options. He assists with the therapies and encourages patients with surplus medicines to share with those who lack.
My greatest fear is that my condition may get worse and that I may be bedridden some day. During diagnosis, doctors openly told me that it could get worse as the condition is progressive. But I try not to think of the worst. Instead, I focus on things I can do to feel better, like doing exercises, avoiding stress and sticking to medication.
