When you live with a degenerative illness, no symptoms are mild. On World Multiple Sclerosis Day, marked today, Jennifer Grech shares the journey with three patients.
“I have been fighting a brutal battle for the past 23 years,” says Kenneth*, propelling his wheelchair.
The knowledge that one has a potentially serious and debilitating disease – no matter how benign a form it seems to take – does change one’s life and requires a significant adjustment. That knowledge is not easy to accept.
Today is World MS Day. Raising awareness of MS is a top priority for all people affected by the disease. More than 2.3 million people worldwide currently live with MS. Of these, more than one million people live with a progressive form of MS.
In Malta, there are more than 350 patients living with this debilitating disease. Every MS patient has a different set of problems but they all suffer from one thing – tiredness. It is not in the medical textbooks, but it is the most significant symptom of all.
MS occurs when the immune system strips nerve fibres in the brain and spinal cord of myelin, a fatty insulating material without which nerve signals cannot be transmitted properly.
Symptoms range from blurred vision or tingling sensations to full-blown paralysis. Usually the disease progresses to become more aggressive over time but some patients find their health deteriorating rapidly.
Every MS patient has a different set of problems but they all suffer from one thing – tiredness
The most important companions for a patient with MS are probably family members and friends, as they can give practical and daily psychological support. However, these activities are an enormous effort for them and they may be at risk of burn out.
If a patient has a clear view of the map and has good companions such as family, friends, and hobbies, the journey will be more pleasant for the patient and his surroundings.
Lack of awareness
Kenneth, 51, has secondary progressive MS
Kenneth describes how he was helped to embrace life with multiple sclerosis while completing his tertiary studies in San Francisco, the US, in 1995.
“When the professor informed me I have MS, I was scared to death. I didn’t have the courage to tell my superiors what I had.
“I started feeling MS symptoms when I was sitting for an exam in spring 1989. It wasn’t disorientation as such but rather frustration with myself. I started to experience difficulty in writing, particularly the letters that needed curvatures. I thought this was due to my spending hours on end at my computer. In hindsight, I believe this was the start of the relaxing-remitting type of MS that started to affect me.
“Since my diagnosis, I have realised the lack of local awareness about MS. I have noticed that the best way to face this condition is to think positive and confront it. A possible attitude may be one of slow acceptance of the situation and better understanding of the condition. I personally tried to relate better with others, especially my family and my peers who are afflicted with MS.
“When I had started to work in 1990, the symptoms were hardly noticeable. I felt happy and confident with myself. However, as the years passed by, many people I knew at work initially pitied me and accepted me. But I believe others were unaware of what MS is, and were not helpful.
“In the 23 years since my diagnosis of secondary progressive MS, I have suffered substantial symptoms. I began using a wheelchair occasionally in 2008 and by 2009 was unable to walk at all.
“When strangers see that I’m in a wheelchair, they make immediate judgements about me as a person. Most assume I’m dependent onothers and unable to engage in professional activities. In perceiving that my legs no longer work, strangers also conclude that my intellect has been likewise affected.”
Coping with symptoms
Joyce, 50, has secondary progressive MS
“My experience of dealing with my condition is often troubled by other people’s conviction that they know the best way for me to handle a situation.
“The diagnosis of an incurable degenerative illness changed the life I had imagined for myself and put an ever widening gap between me and ‘normality’.
“Sixteen years ago, I embarked on a journey of discovery, learning how to cope with each new symptom. I have had help and support from my friends and family and from an amazing group of people from every area of the medical profession and the MS Society. But I think that, individually, they sometimes tended to act in isolation.
“I have been helped to embrace the disease for what it gives me, not just what it takes away.”
Therese, 25, has relapsing-remitting MS
Comparing a patient’s symptoms to those who are worse off can be far from reassuring.
“My body first started ‘refusing’ my directions in the autumn of 2011. Less than 500 metres from home my knees just wouldn’t hold me for another step, and I collapsed. People going past probably thought I was drunk – a reaction I would get used to,” says Therese.
At the time, Therese was sitting for her A-levels. One day, while watching a movie at the cinema, she fell asleep and unexpectedly woke up with her whole body numb, except her face and neck.
“The doctors told me it was all the stress I was having due to my studies and prescribed antidepressants.
“My condition was diagnosed nearly two years ago, after I had vision difficulties, loss of feeling, pins and needles, and a range of other MS symptoms. Various relapses triggered involuntary movements in my arms and legs, and I suffered pain, visual problems, and debilitating fatigue.
“When I called my boss after being diagnosed, she did not understand and asked me what she should say to my colleagues. I had to disclose my MS because it could have become a safety issue at work, so my responsibilities needed to be adjusted accordingly.
“Despite it being a private matter, word spread fast about my diagnosis and people immediately started treating me differently.
“To date, I really wish I didn’t give her that reply as I didn’t want to be pitied. Unfortunately, a few of my colleagues went out of their way to make it even more difficult for me. Going to work after two months, I was repetitively asked how I felt – therefore, I had to repeat the same thing all over again, which made it worse for me.
[* Only interviewees’ first names have been used to protect their privacy]
The unpredictable course
The course of MS is unpredictable. Some people may feel and seem healthy for many years following diagnosis, while others may be severely debilitated very quickly. Most people fit somewhere between these two extremes.
It is impossible to predict the course of MS accurately for any individual, but the first five years give some indication of how the disease will continue for that person. This is based on the course of the disease over that period and the disease type (relapsing-remitting or progressive). The level of disability reached at endpoints such as five and 10 years is thought to be a reliable predictor of the future course of the disease.
Age at onset and gender may also be indicators of the long-term course of the disease. Some research has indicated that younger age at onset (under 16 years of age) implies a more favourable prognosis, but this must be tempered by the knowledge that, for a young adult, living with MS for 20 or 30 years may result in substantial disability even if the progress towards disability is slow.
Other research has indicated that late onset (over 55 years of age), particularly in males, may indicate a progressive course of the disease.
‘My dad’s totality was shattered’
In my early childhood years, I grew up with a different kind of dad. I used to ask myself why my dad didn’t walk properly or why was he always absent from my school sports day. As I grew older, I understood my dad was diagnosed with secondary progressive type of MS, with progression, at age 34, when I was still a baby.
My parents had been happily married for six years before being given this shocking news. From then on – and despite an unpredictable future – our family life has been a loving, caring and supportive niche.
My father was in and out of hospital many times to be given various types of medication to slow down the progression and reduce the symptoms, including steroids and beta-interferon. Throughout all this, my mother dedicated her whole life to him.
My father worked as a tourist guide but his disease affected his mobility, and he had no choice but to seek secretarial work. Eventually, his gross and fine motor skills began to deteriorate, making it even more challenging for him to continue his clerical duties. SPMS affected his speech and swallowing abilities, leaving my dad with no choice but to quit and retire from work at the early age of 45.
Amid our struggles, my dad was and is my greatest inspiration in life
Although my parents were carrying such a heavy burden, as a daughter, I never felt the heavy pain mum and dad were experiencing. When I was still in my primary school, my parents encouraged me to explore my musical talents and learn to play an instrument. I have to say that nowadays, music feeds my soul. They supported me fully in my education and I never felt less than others in my society.
My father was very determined, courageous and kept his sense of humour. These qualities helped him achieve his life goals despite his struggles and pain.
As a family, we managed to visit Lourdes, Disneyland Paris, and boarded a Mediterranean cruise. My father was never ashamed of his disability and we were always proud of his daily accomplishments.
Over time, my father’s mobility degenerated and he needed to use his wheelchair daily. His speech deteriorated and we could only communicate through lip-reading, which was also a challenge. At times, dad lost hope of communicating with us. His swallowing difficulties also deteriorated. Eventually, he had to be fed artificial food via a PEG-tube.
Throughout, I could feel, touch, see dad’s totality being shattered, humiliated and violated. He depended on his family to move, speak and eat. He had supportive friends and colleagues, but eventually, these were lost. I could see them becoming uncomfortable around dad’s disabilities. Our social life deteriorated with each passing day.
Amid our struggles, my dad was and is my greatest inspiration in life and I now work as a full-time healthcare professional. He was my first supporter and gave me the courage to become the professional I am today. I feel I lost part of myself when my dad passed away in his early 50s due to medical complications brought about by SPMS.
Who am I today? I’m a 25-year-old daughter of a deceased father with SPMS. I have experienced and continue to experience joy and sadness. I have been taught great values in life, which help me face the world with a loving, hopeful, positive attitude in life. Despite the pain, sorrow and tears, I am proud of my dad and my family, because it is through them that I have learned that love, through dedication and sacrifice, wins against all odds.
[* No names have been used to protect the privacy of individuals]
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