AHEAD of Parkinson's Awareness Week, sufferer Colin Freegard shares his experience of living with the debilitating condition.

THE signs were subtle at first – a little stiffness and inexplicable aches. Until one day, eight years ago, Colin Freegard’s arm hung limp at his side.

Soon his left hand and fingers became gripped by tremors.

It would take two years for doctors to identify the cause of Colin’s swift decline and mystifying aches: Parkinson’s disease.

“I started having continued pain in the neck and shoulders,” recalls the 71-year-old from Cheney Manor. “I was concerned. My neck was getting stiff, my left hand and fingers were trembling. I didn’t know what was happening to me.”

His symptoms puzzled consultants and each new X-ray and CT scan did little to shed light on his illness.

Every negative test was a relief and yet raised more questions about his alarming symptoms and rapid deterioration.

“It was two years of back and forth,” explains the father-of-two. “At first they thought I might have had a mini stroke. I got tested for all these neurological conditions and had three MRIs and two CT scans in two years. Then they thought it was early onset Multiple Sclerosis. When they realised it wasn’t MS, we were so elated we forgot to ask the doctor what it might be then.”

At a loss, Colin’s wife Ann began her own investigation, researching various neurological disorders. She found similarities between his symptoms and those of some Parkinson’s sufferers. As no test exists to diagnose Parkinson’s disease, the condition is detected through an elimination process.

Finally by 2009, doctors at John Radcliffe Hospital were confident they had ruled out every other possibility. Colin had developed Parkinson’s, an incurable condition in which part of the brain becomes progressively damaged.

This explained the tremor, difficulty to move and stiff and inflexible muscles.

With the diagnosis, or lack thereof in this case, came feelings of inadequacy and soon profound depression. From an athletic man, former footballer and Western League referee Colin had become a recluse, unable to make a cup of tea or so much as shower on the bad days.

“It was a relief to know what I had but by the same token we didn’t know what the future held. It’s degenerative and there is no cure for it. I couldn’t see any hope on the horizon. I felt despair.

“When I started feeling ill I had to stop everything. I got tired, everything was too much.

There is no predicting what is going to happen from one day to the next; there is no pattern.

“Even though you may not be shaking, you can have internal tremors. It’s very debilitating trying to hold it in. My balance was impaired; I lost dexterity in my fingers and I couldn’t even open a jar.

“I didn’t realise it was going to be that bad when I found out I had Parkinson’s. I was uncomfortable being out in public. I felt like a lesser person.

“Everything you do is controlled by your brain, so all of a sudden you can’t do any of it. On a bad day I am a different person, my face goes expressionless and my left shoulder rises uncontrollably. My wife has to help me do everything.”

Colin, who owned a bathroom, kitchen and bedroom business, was forced to retire prematurely.

As for Ann, she placed all her hopes on a possible cure or breakthroughs in treatment.

“To start with you want to think doctors are wrong,” she says. “One of the biggest things is denial, even for the partner. You keep thinking the next time you go to the doctor they will be able to give your husband something that will make him the way he was before. You just stay hopeful.”

Her vain efforts to understand her husband’s state of mind took their toll.

“I found it isolating. You try to encourage your husband to do something like going out but he won’t and that can be very frustrating. It’s difficult to see him change. He couldn’t see the end of the tunnel.”

The extent to which the condition had impacted his entire family was brought to the fore in 2012, when his seven-year-old granddaughter candidly confessed she missed the days when he would play with her.

“That was the lowest point for me,” he admits with emotion. “I was sat in the conservatory at my son and daughter-in-law’s and she said ‘I don’t like it when you’re ill. You used to do a lot with us before'.”

Trapped in a pit of despondency for years, Colin’s life took an unexpected turn in 2013 when he and his wife came upon a leaflet at Great Western Hospital’s Betjeman Centre promoting the Swindon and district branch of Parkinson’s UK.

Ann decided to attend the group’s monthly meeting, while an unconvinced Colin stayed at home.

She persuaded him to join her at the next gathering.

Two years on, a semblance of normality and order has been restored to each of their lives and Colin’s symptoms appear to have stabilised thanks to more adapted medication and regular exercise classes sponsored by the local branch of Parkinson’s UK. These include weekly warm-up exercises at the Grange Community Centre.

“I had never ever in my life asked for help. It was very difficult for me to realise I couldn’t do it on my own.

“We were made very welcome at the meeting. One of the people I met that day happened to be one of my old colleagues from football. I was really surprised. You realise you’re not alone.

“The last year has been really good for me and my life is certainly better now that I’ve joined the Parkinson’s group. Now I can talk about Parkinson’s.”

Ann, who never considered herself as a carer, simply a wife faithful to her oath to stand by her husband in sickness and in health, also found comfort, support and understanding from other partners through the support group.

Colin is due to be assessed for Deep Brain Stimulation treatment at Southmead Hospital, a method which would stimulate his brain and potentially help to manage some of his symptoms.

“As far as the future is concerned we take it day by day,” adds Colin, who was recently appointed membership secretary for the group. “I haven’t given up hope of a cure. Ann won’t let me. Meeting the group has helped me understand that it’s not the end of the world. There is a lot of help out there. I’m looking forward to doing things again. I think you can’t accept that it’s taken over your life; if you did that would be the end. You just learn to live with it. Raising awareness and hoping there is a cure round the corner is giving me a purpose.

“I think the most important thing is to concentrate on what you can do rather than what you can’t."

Parkinson’s Awareness Week will be held between April 20 and 26. For more information about the Swindon Parkinson’s UK group or to join call Dave Logan on 07887 354641, email davelogan_parkinsons.swindon@outlook.com. Alternatively visit www.parkinsons.org.uk.


- Parkinson's is a progressive neurological condition.

- People with Parkinson's don't have enough of a chemical called dopamine because some nerve cells in their brain have died.

- There's currently no cure for Parkinson's and we don't yet know why people get the condition.

- Parkinson's doesn't directly cause people to die, but symptoms do get worse over time.

- One person in every 500 has Parkinson's or around 127,000 people in the UK. Most people who get Parkinson's are aged 50 or over but younger people can get it too.

- Everyone with Parkinson's has different symptoms. But the main symptoms are tremor, rigidity and slowness of movement. As well as affecting movement, people with Parkinson's can find that other issues, such as tiredness, pain, depression and constipation, can have an impact on their day-to-day lives.