Life in the time of Multiple Sclerosis

Martin Muiruri and wife Robai have been married for six years 

Martin’s diagnosis:

“I have always loved playing football and so one day while at it, I noticed that my right foot was losing its strength. It was like a young child’s kick. This was in the 90s, when I was about 23/24 years old. I did not think much of it. I then started losing sight and so I went to the optician who prescribed glasses. But the condition worsened. The doctor advised that I get an MRI as it could be a nerve issue. I also went to see a neurologist who performed a lumbar puncture, where they draw a sample of your spinal fluid to test. The results were then taken to England where they showed I had probable Multiple Sclerosis. The results are usually categorised as possible, probable and definite. As time went on it became definite that I had MS. This was in 2002.

“Before this diagnosis, the going had not been easy when I started experiencing the symptoms. I had been given all kinds of labels because of the physical ways in which the condition changes you. At the initial stages it was said that I had HIV, so much so that I even believed it. That test came back negative. It is at times like these that you know your real friends; I lost many of them that way.” 

Robai says:

“We met at a university expo at KICC in 2004 through his sister, my friend. His sister had mentioned that he had an illness but in a casual “by the way, my brother is sick” way, without going into detail. On our first date, he told me he was suffering from MS.  When I went home I Googled all I could about it to learn more – scary stuff! But we went on to date for the next four years before getting married. Fortunately, I had a close-knit support group of friends, family and mentors who readily accepted him.

“Now that we were home, the reality of MS became personal. Initially we would fight because there were things I expected him to do – things I saw my dad doing, for example low-maintenance jobs around the house. I was frustrated that he was leaning on me and I wanted to lean on him. I would be fearful whenever he was away from home, that he would fall down or get knocked by a vehicle (due to stability and sight issues). With time and huge adjustments, I don’t even notice there is anything wrong with him until someone points it out. Our daughter has always known her father to be like this so it is normal for her. She will for example leave her group of friends when playing and run to him to take his hand, guiding him as he walks, the way she has seen it always being done.

“We have MS support group meetings in our home so she has been exposed to the various stages of the disease, from walking aides to wheelchairs, and she has been able to internalise it in her own way.

“We have learnt to deal with the negative attitudes. The stares for example. People will try to sell to us things such as GNLD, and everything in between. Martin has often been mistaken for a being drunk because of the way he walks. Those who have guts will ask outright while others will pity me, which is unfortunate.

“We will be married seven years this July. In that entire period, only once has someone asked me ‘how are you doing’. I just broke down. The expectations on me are immense. At least Martin knows what he is going through and we can deal with it but as a caregiver, I have to work out what I am feeling, which is not always straightforward so yes, caregivers also need help. 

Martin says:

“Anything can trigger a relapse. A cold and a tooth extraction have taken us there. Interestingly, after the relapses I have been quite creative. I have written a board game, books and music lyrics for the entire Bible. I am a born again Christian and I have been able to get to the point where as long as Christ is within me, I am not afraid of what is ahead. I believe, very definitely, that I will be healed. It is also important that you do not look within or you will be so discouraged. Look up and believe what God has said.

“There is still hope and life. We still do things we enjoy. MS – or whatever else could be holding you back – should not get in the way. We look forward to seeing our daughter graduate and even get children.

“We encourage support groups for there is a place for them. You talk and share and are re-energised. Unfortunately many fail to come to terms with the diagnosis and some family cultures are built on ‘we do not discuss these things in public’ so prefer to shy away. People should not despise these forums.”

THE SINGLE GIRL LIVING WITH MS

Irene Oloo, fifth year medical student studying medicine and surgery 

“I grew up in Nairobi, the lastborn in a family of six and enjoyed a normal childhood. In 2006 when in Form One, I got seriously sick and I was really vomiting. I went to the school dispensary and was given drugs that did not help. My parents had to come for me and I was taken to Aga Khan Hospital. I was admitted for three days and the diagnosis was hyperacidity. I was given painkillers and advised two days of rest. I was still not responding to the medication and I was then taken to Avenue Hospital and admitted for a further two weeks.

“Because I was vomiting a lot and having intense hiccups, hyperacidity kept cropping up but this was in conflict with the degree of vomiting and hiccups I had. One evening, five doctors stood over my bed discussing my condition. I was getting frustrated because they did not have any answers. I therefore asked to be discharged and the next day I went home and slowly started recuperating to the point I was able to go back to school.

“In 2008, when in Form Three, I started losing vision in one eye. It was like there was a cloud in my eye. I went to Lions Eye Hospital; they could find nothing wrong. Since I used to wear spectacles, they changed my lenses and sent me back to school.

“All seemed well but four years later, in my first year of campus, I started experiencing pins and needles in my arms. Sometimes it came like a gripping pain in the arms When I couldn’t ignore it anymore I told my parents about it. I knew it was something to do with the nerves.

DIAGNOSIS AT LAST

“A very expensive test was ordered by the doctor we went to see but just before we could do it, the pains went away. However, later that year, I started losing my vision in one eye again. I went back to Lions Eye Hospital and this time I was diagnosed with optic neuritis which is an inflammation of the optic nerve. I was started on drugs immediately; I was taking about 20 tablets in a day with weekly follow-up visits. My eyesight improved for a while and then it got to a point it was not improving anymore. I also started having tingling sensations in my right leg and I had problems moving. It was difficult getting medical attention because you would be told that the neurophysician is fully booked over the next two months or that they are out of the country yet your condition was becoming urgent by the day.

“I happened to accompany my mum to see her arthritis doctor and she shared with him about my situation. He referred us to my current physician, Prof. Amayo. He ordered an MRI which showed that I had MS or Neuromyelitis Optica, NMO. A lumber puncture confirmed it. Basically, my immune system was attacking the protein in the sheath covering the spinal cord and optic nerves, causing inflammation. I was immediately admitted in hospital to shut down my immune system.

“It is like cat and mouse with this condition. Just when you think things are settling down, another limb is paralysed, you are admitted, discharged and then the other limb and you are back, and so on. I am currently taking 12 drugs a day.

“The illness consumes much of my time since I am in and out of school. However, even so, I have never failed or repeated. I plan for every single day because there is no certainty that anything will go as planned. I get tired faster than others so I have to live close to my classes. My room must be on the ground or first floor because of the pain and fatigue when climbing stairs. I cannot wash my own clothes so I pay someone to do that for me. Because my immune system is depressed, hygiene is very important for me and those around me.

“Relatives and friends have come to understand the condition beyond concluding it is something spiritual; initially, witchcraft came up a lot. Of course, I have some fears. For example after the relapse, I feared I would not finish medical school because I couldn’t use my hands. Prof. Amayo told me that just because you cannot use your hands does not mean you cannot be a doctor. I still have not pinpointed my specialty because of my health challenges. There is the fear that whatever the specialty, my nerves can stall at a crucial time since I still have tremors and as such my specialty will be one that can handle my challenges.

STRUGGLE CONTINUES

“I am also taking very expensive drugs and blessed that university is supplying me with these drugs but when I graduate, this won’t happen and insurance does not cover us. I fear I will spend all my salary on medication or that I will become dependent on my parents forever. The drugs also have side effects and some include the risk of developing certain kinds of cancers. I have been using them for five years and I fear being part of the statistics.

“Marriage life is also another fear so I am praying at the right time, God will give me a spouse who will understand the challenges and the limitations that are part of this journey.

“Having said that, giving up is not an option. For those living with this illness, my advice is, do not overthink it. These things happen. It is extremely important to avoid stress or you will always be in hospital. Learn to communicate to get support from those around you. Don’t assume people understand what you are going through. We are really sick but when you look at us you cannot tell it, so you can be easily ignored. Understand that you are not like everybody else and you are not who you were before so do not compare yourself with others. Accept the condition and start forming a strategy for living with it. Physiotherapy is also very important; it helped me a lot in rehabilitating the functions of my limbs. Always listen to your body and don’t push it. Prioritise important things within the amount of time you have and the amount of energy you have. Customise your life to that which suits you.”

Living with MS 

•  Multiple Sclerosis and Neuromyelitis Optica are both disorders involving inflammation in the nervous system, with NMO showing more early resultant disability after an attack. It is treated with medication to suppress the immune system at its onset.

•  MS causes many symptoms, including stiffness (spasticity), pain, weakness and difficulty walking, imbalance, fatigue, and difficulties controlling the bladder (neurogenic bladder).

•  The facilities for MRI scanning are available in Kenya and the antibody tests are often sent overseas, as these are rare and costly tests.

•  Treatment focuses on the acute attack – it involves intravenous injections of steroids, and this is widely available, with the medicine in limited supply in government facilities sometimes. Then there is treatment to prevent further attacks. Finally, palliative care is required as the disease advances.

•  There is an organisation for MS patients. Medications are available. There are also now more professionals interested in and working with MS, as well as initiatives underway to set up centres for the care of neurological disorders in the region. And so the future for people living with MS is not bleak.

-- Consulting neurologist, Dr Juzar Hooker, Aga Khan University Hospital

Additional resources: www.mskenya.com which also has personalised blogs from those living with MS. And on Facebook: https://www.facebook.com/MSAssociationofKenya