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Dodging Bullets

18 July 2017

I had my first attack when I was nine years old. The first thing I remember was finding it difficult to do up buttons. This was followed by weakness in my left arm and then problems with slurring words and my mouth dropping on the left side and problems closing my left eye. Then trouble walking, causing me to drag my left leg. I cannot remember being particularly concerned about what was happening to me but, in retrospect, I cannot begin to imagine what my mother must have been going through.

My father had died from war causes nine years earlier, when I was six months old and Mum was raising my older brother and me on her own. There were two older married sisters in their mid to late twenties.

I cannot remember how long the attack actually lasted, but something tells me it wasn't very long.

A relapse occurred five years later when I was 14 years old. I first noticed the problem late one afternoon being unable to ride my bike home from cricket training and being with friends who helped me get home wheeling my bike. I have memories of being at school and having a friend hold my ruler so I could rule lines.

This time things were different in so much as I was hospitalised and still have vivid memories of two lumbar punctures which were terrifying for me. The paralysis was down my entire left side, similar to the previous experience. I have no recollection of how long I was in hospital but remember attending the hospital's school and friendships developed with other patients and nursing staff. I remember the day things started to improve and recall proudly demonstrating to a nurse how my walking had improved. I was transferred to a rehabilitation unit before eventually being sent home.

The diagnosis of Multiple Sclerosis was bandied around but no definite name or explanation was given to these two occurrences. It was suggested to me years later that this was probably due to my age and the fact that MS in someone that young was something of a rarity. I am told that advancements in diagnostic tools now enable MS to be diagnosed in children as young as 18 month olds.

I cannot recall the circumstances, but around the age of seventeen I was seeing a medico - who or what, or for what reason I am not sure. I do not remember much of this but there are two things that do stick in my mind. Firstly being told of the prospect of being confined to a wheelchair by the time I was twenty five. I am not sure whether the gravity of this really sank in although I don’t remember living with a dreaded fear of life in a wheelchair. The other thing I remember was being told to "live with it, not for it". I have successfully fostered this attitude and it has become something of my approach to life in general.

My third attack occurred when I was 26 years of age. By this time I was married and had three small children under the age of seven. Things started to happen as they had previously: weakness in my hands resulting in difficulty carrying out fine motor skills like holding cutlery; weakness in my arm and leg. Once again it was my left side that was affected. Again I was hospitalised, but after several weeks the effects subsided. This was a troubling period for my wife and children and during this time the prognosis of being wheelchair bound, given to me years earlier, was of real concern.

My philosophy of "living with it, not for it" stood me in good stead and I continued to live a normal active life: working hard (including running my own successful business for 25 years), being a dad, playing cricket, football, squash, golf and sailing. I started jogging, which became a bit of an obsession. At one stage I was running 70kms a week. I would run 10kms in the morning before work. This was all brought to a screaming halt following two total knee replacements due to arthritis, exacerbated by sporting injuries.

I retired a couple of years ago aged 70 and with my wife Lynne, who is also retired, are settling into the next phase of our lives. I am now 72 years old and have had no recurrence for the last 46 years, thus the "benign" status given to my MS.

I was not formally diagnosed with MS until 1989. At that time I had been suffering from severe headaches and my neurologist sent me for an MRI which, at the time, was a very new diagnostic tool. They actually sat me down and gave me a pamphlet to read and video to watch about the MRI process prior to it being carried out. As a result of the MRI a formal diagnosis of MS was made following the identification of instances of scarring in the myelin sheath. The formal diagnosis came as no surprise and did nothing more than put a name to something which had been suspected for many years.

My left side has always had a slight weakness, residue from my three attacks. Over the last twelve months I have become very unsteady on my feet and experiencing balance issues. An MRI in January 2017 showed no activity and no changes when compared to previous MRIs carried out in 2009 and 2014 (there is no record of the one carried out in 1989). My neurologist believes the problems currently being experienced, are a combination of the residual MS damage and the ageing process.

At the suggestion of the neurologist I contacted MSWA with a view to seeking physiotherapy to address the weaknesses and the balance issues.

In early March 2017 I was assessed by a MSWA physiotherapist and, as a result commenced attending weekly physiotherapy sessions at MSWA, undertaking exercises designed to add strength and improve my static and dynamic balance. The assessment also recommended consulting a podiatrist to see if there was anything they could do, to improve my balance. I have had orthotics made following the examination by the podiatrist, and I am now wearing them.

This has all happened within the last few months and although it is a bit early to tell, I can sense improvement in the strength in my left leg and a subsequent improvement in my balance. I understand that I have a role to play, and fully realise that an hour of physiotherapy every week is not going to solve the problem. So I am doing my "homework" and intend to give it my best shot.

At the suggestion of the neurologist and my GP I am using a walking stick outside the house as a safe guard against falls. My aim is to be able to throw the stick away once my legs gain more strength, and my balance improves.

Some of the weakness in my left arm and shoulder can also be attributed to nerve damage resulting from neck surgery which was part of treatment for cancer. In 2008 I was diagnosed with squamous cell carcinoma of the head and neck and had a tumor removed from the left side of my neck followed by radiation therapy and chemotherapy. The surgery together with the radiation has left obvious collateral damage to my neck and shoulder, primarily from nerve damage caused during surgery and the aftermath of the concentrated radiation treatment.

I appreciate that I am one of the lucky ones when it comes to my MS experience, and for this I am thankful. After 46 years without an attack and having completed the cancer journey relatively unscathed, I feel fortunate to have dodged a couple of bullets.

It is only recently that I have taken an active interest in MS and having now read a lot about it, things are falling into place. Things that have bothered me over the years, which I never connected with the MS now have some form of explanation. Things like severe feelings of fatigue for no apparent reason: difficulties with heat and humidity (feeling drained): prickly feelings on the skin: over sensitive areas of the skin: mood changes: etc. These things have been issues for me over the years, but never had I associated them with MS.

I have been tremendously impressed by the support and services offered by MSWA and I am grateful for the assistance provided to me. Everyone I have had contact with has been very supportive, knowledgeable and professional. I would particularly like to mention Lyn, Kim and Zoe from the physiotherapy unit at Beechboro Lodge who work so hard with caring, compassion and dedication in their roles, assisting people like myself and others with needs much greater than mine.

 

I acknowledge that this is but one of many, many MS stories. But this one is important to me because this is my story of my MS journey.