When did it all start?

09 Dec 2011 by Laura Lewis

We liked “Mr Shaky”, an elderly man who shuffled into to our classroom every Friday afternoon to collect money and stick stamps in our National Savings books. He had a crooked posture, his voice was croaky and we couldn’t take our eyes off his unsteady hands. Sticking the pretty green stamps of Princess Anne on the right page and in the right spot was hit-and-miss for him. At the age of 5, this was probably my first encounter with Parkinson’s disease (PD). Little did I know that it would become my unwelcome companion in future years.

At the age of eight, I took up the violin. I enjoyed playing and my long-suffering family learnt to tolerate those early ear-splitting scrapings. My first teacher, a German professional violinist, spoke very little English, but eventually taught me how to make the violin “sing”. Sadly, after only two years, illness prevented her from teaching and she had to return home. My second and last teacher did not mince her words and tolerated no nonsense. Not long after my first lesson at the age of 11, she referred to my stiff left hand as “very weird – like a crow’s foot”. Increasingly, as I moved into my teens, my left hand dragged behind and, although I was not aware of it at the time, this may have been the beginning of my neurological problems and the end of my love affair with the violin.

More symptoms occurred during the 1980s. In 1983, aged 30, I failed my driving test due to an uncontrollable tremor on my left side whilst attempting a hill start. In 1989, I saw a neurologist about pain down my neck and left side. I visited an osteopath and two chiropractors, but in spite of consulting the experts, we could not find the cause of my annoying and sometimes debilitating symptoms.

In 1992, whilst on white-knuckle ride dodgem with my tear-away teenage son, we crashed into his reckless younger brother. The inevitable collision led to a twisted hand and a very minor wrist fracture. I blamed this injury for the tremor that began to develop in the same left hand. Meanwhile, the pain on the left side of my back and neck and my left shoulder worsened until it began to interrupt my sleep. Eventually, in 1997, I had surgery to relieve the pressure in my shoulder, but afterwards the improvement was only very slight and the tremor persisted. I also noticed that my left arm stopped swinging when I walked.

I was becoming ever more conscious of the symptoms of tremor, stiffness and pain on my left side and was referred to a neuro-physiotherapist. She was very thorough and after the six week course expressed her concern and sent a letter to my GP. Three more months of uncertainty followed and the final diagnosis was made in August 2000. At the relatively young age of 47, this came as a surprise to me and my GP. Had I been twenty years older the symptoms would have been identified much earlier.

“How long have you had Parkinson’s?” This is a question I’m often asked, but I have trouble answering because PD crept upon me gradually. It is generally accepted that symptoms do not become obvious until around 80% of the dopamine-producing cells in the brain are lost. If this is true, the deterioration must have been occurring for several years prior to my diagnosis. With hindsight, it is easy to spot the insidious advance of PD, but at the time it was not obvious or I chose to ignore the symptoms. PD began to take hold in my thirties and early forties when life was good. These were some of the happiest and most productive years of my life when family life was fulfilling and my career was advancing. Ignorance was bliss.

About the Author

Laura Lewis
I experienced the symptoms of Parkinson's disease (PD) during my 40s and was diagnosed in 2000 at the age of 47. At the time I worked as a lecturer in a further education college where I was in charge of geography and environmental sciences, and was Senior Tutor to 250 students. I also held the post of Deputy Chief Examiner in geography for the International Baccalaureate and ran training courses for teachers in Africa, the Middle East and Europe. I worked with PD for 6 years and finally retired in 2006. Since retiring, I have setup a support group for those with young onset Parkinson's in the Reading area. I write in my spare time and have published three geography textbooks.

I have three grown-up children who have all left home and I live with my husband, two fat cats and five tortoises. My hobbies are photography, gardening and breeding tortoises and my philosophy is: "there's no time like the present".