Living with Parkinson’s disease

When Joshua Wasike, 56, was diagnosed with the nervous disorder in 2017, it came with the promise that the disease would only get worse. 

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

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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.

What is Parkinson’s disease?

Parkinson’s disease is a nervous disorder that affects movement. Its symptoms are progressive meaning they get worse over time. At first, it is characterised by tremors that start in one hand and stiffness in the body.

Causes

There is no known cause of Parkinson’s disease. However, research indicates that in Parkinson’s disease, certain nerve cells that produce a chemical messenger in the brain gradually break down or die, leading to abnormal brain activity.

Though rare, researchers have also identified specific genetic mutations that cause Parkinson’s disease. Additionally, exposure to certain toxins or environmental factors may increase the risk of the disease.

Symptoms

·       Tremors in a limb, often hands or fingers

·       Loss of sense of smell

·       Slowed movement or bradykinesia which involves steps getting shorter and shorter over time while walking

·       Other people drag their feet as they walk. It may also become difficult to get out of a chair

·       Fixed facial expressions due to changes in the nerves that control facial muscle

·       Muscle stiffness in parts of the body, limiting motion

·       Stooped or impaired posture and balance

·       Reduced sense of coordination and balance

·       Loss of automatic movements such as swinging arms while walking, blinking or smiling

·       Slurred speech, tremor in the voice, hesitating before talking and other speech changes

·       Difficulties in writing

·       Sleep disorders

·       Fatigue

·       Pain

·       Sexual dysfunction

·       Mood changes, including depression

·       Difficulty chewing and swallowing

·       Constipation

Prevention and management

The following lifestyle changes have been said to reduce the risk of getting Parkinson’s disease.

·       Consumption of antioxidants such as turmeric, berries, apples, some vegetables, tea and red grapes

·       Avoiding contact with herbicides, pesticides, and other toxins may increase the risk of neurological diseases.

Management options include:

·       Prescribed medications to treat symptoms

·       Surgical procedures where electrodes are implanted into a specific part of the brain to stimulate it

·       Speech therapy

·       Occupational therapy that helps people acquire techniques for getting dressed, preparing meals, performing household chores, and doing the shopping

·       Lifestyle changes including healthy eating and exercises

·       Alternative medication including massage, yoga and meditation

Joining support groups of people with a similar condition goes a long way in helping patients cope with the disease.

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