As Charlie Teale puts it, “I drag my feet, but I’m still determined to work”…
I was diagnosed in February 2013 after going through two years of pain. I’d been to chiropractors, physios, doctors, all to no avail – the pain just continued. It had started with a backache that I couldn’t shake off, before working its way up my neck and shoulders. After four or five sessions with a chiropractor, he told me I needed to see a specialist.
I have private medical health, so I visited a spinal specialist who recommended a six to eight-month course of epidural steroid injections – but it actually only lasted for two days. I was then sent to a physiotherapist to see if they could help. After a lot of sessions, the physio one day asked me to raise my arms sideways as I high as I could, and when I tried he said “I think you’ve got Parkinson’s.”
I eventually got to see a neurourgeon, and the moment I walked in she immediately said “You’ve got Parkinson’s.” She recognised my gait, the fact I couldn’t swing my left arm and other details. She also talked about other symptoms I’d had, like losing my sense of smell. It all fitted.
Since then the Parkinson’s has been up and down. I see a very supportive Parkinson’s nurse twice a year, though it was twice every couple of months at the beginning. I’m now on Sinemet and selegiline, though the medications have been a bit of a guessing game – there seem to be so many, all affecting people in different ways.
I work around 40 hours a week as a quality manager for a big telecommunications company. A few weeks before my diagnosis my assessed performance results were really down. The manager I had at the time took the attitude of ‘Let’s get rid of him’, but luckily I was reassigned to a different manager who was much more understanding. He urged me to find out what was wrong, and then as fate would have it, the confirmation of the Parkinson’s came through within the next couple of weeks.
Since then my employer’s done what it can help. They’ve added specialist chairs, ergonomic furniture and other bits and pieces to the office through Access to Work, and sent me to see an occupational therapist.
On the outside
I’m still determined to work. I get a 7am train to Euston from where I live, which is usually a 40 to 50-minute journey that’s packed full of workers. Things were particularly bad around the time of my diagnosis – not being able to raise your arms makes it hard to ‘strap hang’ on the Tube. I’d try to push through the crowd to get to the vertical bar or a corner where I could just stand out of the way. I try to get off trains as soon as I can, walk to the back wall to let the crowds go past me and then meander along behind them.
One incident I remember was when I took a bus one evening. It was jam-packed when I got on – a bit wobbly – and there was a lady on board, probably about my age, who shouted out, ‘Don’t you fall on me.’ And I remember thinking, ‘Why?’ I suspect they thought I was drunk. Lo and behold, the bus jolted, I couldn’t stand and went and fell on her lap.
People can only see what’s on the outside. I haven’t got a tremor – yet – so all that comes across is someone getting off a bus like an 80-year-old and ambling along. They don’t see what’s inside and some of the nightmares you go through. I’m still an intelligent man and still respected amongst my friends; they all know what Parkinson’s is and what it means.
About the condition
Parkinson’s is a progressive neurological condition that occurs when nerve cells making up a portion of the brain called the substantia nigra die off, causing the brain to produce lower levels of the chemical dopamine, which among its many roles helps regulate body movement. Parkinson’s symptoms mainly include involuntary tremors, slow movement and increased muscle stiffness, which can be also be accompanied by anosmia (loss of smell), insomnia and depression.
The specific causes of of Parkinson’s are as yet unknown, but are thought to be potentially linked to genetic and environmental factors.
Parkinson’s UK provides advice and guidance for people living with Parkinson’s and their families, offers training and resources for professionals, funds research and campaigns for improved social care and support services. For more details, contact 0808 800 0303 (helpline open Mon-Fri 9am-8pm and Sat 10am-2pm) or visit www.parkinsons.org.uk