"I was the one writing myself off, not Parkinson's"

After Colin was diagnosed with Parkinson’s 6 years ago, he found himself stopping activities, including playing his beloved trombone.

But as his Parkinson’s drugs began to give Colin more control over his symptoms, he decided to focus, not on what he couldn’t do anymore, but on what he could. He shares his story.  

Colin was in his late 60s when he was referred to a neurologist by his GP. He explains: “I’d started experiencing a loss of balance and a tremor was becoming more pronounced as time went on.
“I was also having regular terrible, dreadful nightmares. I would kick and thrash about, bruising my hand on the bedside cabinet.
“People would always say, ‘Oh don’t worry, that happens when you get older’, so I thought this was just to be expected.

"When I took each symptom individually, it could be explained away. But as a package, you could see that I was probably experiencing Parkinson’s for at least 10 years before I was diagnosed.”

A lifetime of work

Colin is an ex-serviceman and served in the RAF. During the 1960s, he saw active duty in Aden (South Yemen). This has allowed him to receive support from the RAF Benevolent Fund and he's now treated as a Disabled War Veteran by the NHS. 
After leaving the RAF, Colin worked for Thames Valley Police until he retired from full-time work. He then spent 10 years working part-time as a Salvation Army Chaplain at a high-security prison. He was still working at the prison when he was diagnosed with Parkinson’s. 

Colin is wearing his Salvation Army and is smiling at the camera.
Colin, working as a Salvation Army chaplain

For practical reasons, Colin never hid the fact he had Parkinson’s, especially as his tremor became more noticeable. “I didn’t want to go and speak to prisoners with a tremor, and for them to think it was because I was frightened," explains Colin. "I wanted to reassure them that whilst they may have committed awful crimes, I wasn’t nervous or shaken by that or by them.”
Over time though, Colin began to experience problems with his memory. “There were times I couldn’t remember if I had locked the doors behind me,” he admits. “That’s when I knew I had to retire.” So 2 years ago, aged 73, Colin left his role having been working since he left school in 1962.

Lost loves

Although Colin had continued to work, the first year after Colin was diagnosed with Parkinson’s was very challenging. 
“My family rallied around me. I really cannot emphasise how important my wife, Janet, and family have been since my diagnosis,” says Colin. “But I gradually began to feel really low. I thought it was the end of everything. All the things I have enjoyed throughout my life I now couldn’t do because I had Parkinson’s.
“For example, Janet and I used to enjoy country walks a few times a week where we would walk three or four miles. I just couldn’t do that anymore. 
“She also noticed that my confidence had gone, especially when driving. Roundabouts became a huge problem as I would be so hesitant to pull out,” explains Colin. “I’ve now given up my driving licence and my daughter Louise, who is my official carer, will drive me where I need to go.

“The worst thing was my concentration levels. All my life I had been an avid reader and suddenly I just had no interest in books at all.”

When I was feeling at my lowest I was ready to sell my trombones. I just thought I would never be able to play them again. 

Colin had played bass trombone with the Great Horwood Silver Band, near Buckingham, for 20 years before he was diagnosed with Parkinson’s. It was the highlight of his year to be on the front row as the band led the local Remembrance parade. 

But his low mood even began to impact this. Colin recalls: “When I was feeling at my lowest I was ready to sell my trombones. I just thought I would never be able to play them again. But Janet told me whatever I did, do not sell them. Instead I put them away.” 

"...this one thing I can..."

Over time though, the medication Colin’s specialist had prescribed began to make a difference and Colin thought about playing his instruments again.

“In effect, I was the one writing myself off, not Parkinson’s," admits Colin. "Picking up my trombone again has improved my life and mood tremendously. To be able to play every week with the band again gives me such an emotional boost.
“The welcome back was overwhelming. It was just like walking back and finding your lost family. And I love playing with them. It was a new lease of life for me.
“When you live with Parkinson’s, it is easy to say no. There are so many things I can’t do, but this one thing I can,” says Colin. 
“This year I have asked if it would be possible for arrangements to be made which would enable me to participate once again in the Remembrance Parade at the Winslow British Legion Club. 

“Without hesitation, this has been supported by both the band and the Legion. I’ll be in a wheelchair being pushed by someone - but once again I will be playing in the front row of the Remembrance Parade.”