AFFLICTED BY MS But Hangs on Hope
Wallace Musiega strikes you as a versatile young man who will not easily give up. He is full of hope despite the magnitude of challenges that life has thrown his
Wallace Musiega strikes you as a versatile young man who will not easily give up. He is full of hope despite the magnitude of challenges that life has thrown his way. He remains encouraged and inspired, even after grappling with multiple sclerosis (MS) for the last two years. He shares his experience with MWAURA MUIGANA.
A friend recommended that I interview Wallace Musiega so he can share his experience with Parents’ readers. I called him one morning to book an appointment and was quite disappointed. He sounded drunk, yet it was mid-morning. I contemplated hanging up the phone; unsure an interview with him would be of any value to our readers. Nevertheless, I still booked the appointment, hoping he would have sobered up by time we caught up.
I marshaled patience as he slurred while trying to explain to me how to get to his office at the Kenya Power Company’s (KPC) construction department in Ruaraka in Nairobi. Despite the slur, his directions were perfect and for a minute I thought I was being a bit mean to judge him as a drunkard even before meeting him.
Just before setting off for the interview the following morning, I called him just to be sure the directions were accurate. He still sounded drunk but the directions remained as given the previous day. Within a few minutes I was outside his office in Ruaraka. Even before I could pull out my phone to announce I was there, I saw a man staggering in my direction, while waving at me. Obviously he had recognised my branded car.
Face to face with him seemed to confirm my doubts. Had I come all this way to interview a drunkard? I asked myself. He extended a shaky left hand to me and I missed it, not once but twice and this seemed to amuse him. I was thoroughly embarrassed. When I eventually got hold of his hand I was amazed at how weak it felt. I couldn’t even give him a firm handshake. It then hit me this was no drunkard, but a man battling serious health issues. I couldn’t stop beating myself for being so prejudiced before meeting Wallace.
As if to allay my fears, he started by introducing himself and affirming that he had never tasted alcohol in his 32 years of life. He told me he had a medical condition that affected his limbs and mobility and made his speech slurred. Wallace suffers from multiple sclerosis (MS). Few people understand his condition and many assume, like I did, that he is drunk.
“Some clients refuse to be served by me, mistakenly thinking I’m drunk. But I always endeavor to explain my condition,” says Wallace, a KPC record clerk in charge of acquisition of materials for teams undertaking jobs in the construction department.
Wallace explains to me the journey he has waked in the last two years. He was as fit as a fiddle when he left the office one day in 2010 for his home in Kasarani. He had a chatty evening with his wife and their daughter before resting for the night. He was surprised to wake up the following morning with his entire body feeling so heavy that he couldn’t lift himself out of bed. He tried to call his wife to come and help him, but the words were slow to come out and he was slurring. His eyes could also not focus properly. He didn’t feel any pain yet his whole body felt heavy, weak and shaky.
His wife was shocked beyond words to see her husband in that condition. They both assumed it was a temporary condition, which would go away on its own, but this was not to be. His condition worsened with each new day. He didn’t think it was a health-related issue because there was no pain or any physical features like swellings. At one point, he almost came to believe he had been bewitched, but his Christian faith prevailed upon him to stop that line of thinking. Wallace worships at the Deliverance Church Kasarani.
When his condition became severe, he consulted a neurologist at Kenyatta National Hospital (KNH). He was admitted for observation and tests. “The doctor wanted to rule out an Ear Nose and Throat (ENT) problem as blocked ears could make one lose balance. I didn’t have any ENT problems. In the meantime I was put on steroids and the doctor recommended a lumber puncture test. This is a test where fluid specimen from the spine is removed and sent to South Africa for analysis. The specimen taken at KNH got spoilt and I had to take another one at the Coptic Hospital in Nairobi,” says Wallace, a diploma holder in information science from the Kenya Polytechnic.
He also underwent many other tests including a brain scan and magnetic resonance imaging (MRI) to determine the functioning of his brain. These tests diagnosed multiple sclerosis (MS), which was reconfirmed by the lumber puncture tests results from South Africa.
“The news was shocking beyond words. My wife thought we should seek a second opinion. A neurologist at the Aga Khan Hospital came up with the same diagnosis. He went further to explain to us in great detail what MS was and what we should expect. We had not heard of this condition before. MS is caused by the body’s immune system eating up the nerves coating, which it views as a foreign body. When the nerves are left bare, mental coordination to the brain and back becomes sluggish. The condition was more pronounced on my right side and over time I had to learn to use my left limbs. I am now basically left handed which I find very challenging,” explains Wallace.
Even more shocking to the couple was the revelation by the doctor that the condition, which affects more women than men, has no cure. The doctor told him his only hope was a drug, betaseron, which was not available locally. It was another shocker when he went on the Internet to check out the drug. It was available in the USA, Britain, Germany and South Africa at an estimated cost of Ksh 2.85 million for one yearly dose and he needed to be on it for four years. The drug helps to reduce the frequency of relapse episodes and decreases MS flare-ups. Although betaseron goes a long way into helping manage MS, it is known to have potentially dangerous side effects such as depression, liver, heart and thyroid problems. Patients are started on a small dose, which is gradually increased to minimize side effects.
The most prominent side effect is flu-like symptoms, which are experienced by most patients. These include fever, chills, sweating, muscle aches and fatigue, which last for 24 to 36 hours. It is usually the worst side effect after the first injection and lessens gradually with each injection.
Betaseron is also known to cause liver damage and regular monitoring is required to prevent such damage from occurring or progressing. It also causes a decrease in the numbers of red and white blood cells, as well as a reduction in the number of platelets in the blood. Patients are required to have blood tests done every three months for the first year to check the white blood cell count and liver function. After a year, they can be reduced to once every four months. The drug is not recommended for patients suffering from blood problems such as anemia. According to doctors, the drug should be used with caution in patients suffering from depression and should not be used at all by women who are breastfeeding.
Wallace, who comes from a very humble family, had no way of raising the kind of money required to keep him on the drug for four years, and he told the doctor as much. “The doctor advised me against starting on the drug until I was certain I could afford the complete four-year course otherwise I risked having the condition blow to unmanageable levels. In the meantime, he prescribed some other medication, costing Ksh10,200 for a monthly dose, to help alleviate the symptoms,” says Wallace.
Wallace and his wife appealed to friends and family for financial help. A medical funds committee, mainly drawn from family and friends, was constituted. The committee has so far raised Ksh268, 000 and pledges of Ksh 132,000. This is a huge effort, though far from the target.
Wallace’s family, especially his wife, has been very supportive. He also receives great support from his colleagues at work who appreciate and understand his condition and encourage him a lot. He is not given any preferential treatment at work and is instead encouraged to participate in all activities with other staff members, like going to lunch with them. Wallace appreciates the support he gets from his colleagues.
Even though his condition is disabling, Wallace does not consider himself disabled and remains hopeful that money will become available for him to get treatment.
If this story touches you and you would like to help Wallace, you can contact him at:
Email: [email protected] or [email protected]
Phone 0721 358 391
What is Multiple Sclerosis?
Multiple sclerosis is a condition that affects the brain and spinal cord, occasioning loss of muscle control, vision, balance, and sensation thus producing numbness. It’s caused by damage of the nerves of the brain by one’s own immune system. The condition is therefore called autoimmune disease. The body’s immune system normally targets and destroys substances foreign to the body such as bacteria. In case of autoimmune diseases, it mistakenly attacks normal tissues which it views as foreign bodies.
In MS, the immune system attacks the brain and spinal cord, the two gears of the central nervous system. The central nervous system is made up of nerves acting as the body’s messenger system. Each nerve is covered by a fatty substance called myelin, which insulates the nerves and helps in the transmission of nerve impulses, or messages, between the brain and other parts of the body. These messages control muscle movements, such as walking and talking. Due to the damage to scar tissue (sclerosis) in the brain, the brain is unable to send and to receive messages and this breakdown of communication causes symptoms of MS.
What are the causes?
It’s yet not certain why the body’s immune system goes awry in multiple sclerosis. Some scientists believe it is a combination of genetics and something in the environment to which the person was exposed to early in life.
Published in November 2012