"Fast track your life" - Rob reflects on 4 decades with Parkinson's
Now in his early sixties, Rob has lived with Parkinson’s for over 40 years. He shares his story here - how he came to terms with his diagnosis, and how, despite its challenges, life with Parkinson’s is there to enjoy.
When Rob was 13, he competed in swimming races, always finishing first or second. But after races, his teacher would say to him, “Why don’t you use your legs Rob? You’d go much faster if you did.” Rob though, had no idea his legs weren’t doing what they should be.
When he was 15, he was learning to play the guitar. His right hand was fine, but he couldn’t get his left-hand to move up and down - there was no coordination.
At 19, Rob’s friend asked him if he’d done something to his left leg because he was dragging it behind him as he walked. Shortly afterwards and by complete chance, Rob saw a documentary about Parkinson’s on TV.
“I had exactly the same symptoms. I realised I had Parkinson’s and the shock of finding out what I considered to be an old person’s illness at such a young age, was incredible,” recalls Rob. “It was like a nuclear explosion. I went totally numb.”
I could have sat there and thought it’s only going to get worse. But if I’d done that, I wouldn’t have lived the life I’ve had.
Confirmation
For the next 10 years, Rob didn’t confide in anyone, except his GP. He went to see him when his tremor started to become more noticeable. “I told him I thought I had Parkinson’s, and he laughed,” Rob remembers. “He said, ‘No Rob, you are far too young for that!’”
When Rob’s symptoms continued to develop, he was referred to a neurologist. “He was a brisk man and when I said I thought I had Parkinson’s, he scoffed and said it can’t be that,” says Rob. “So he sent me to a specialist neurology unit where I stayed as an inpatient.
“Even though I knew it was Parkinson’s, there was still an element of, ‘Well you might have got it wrong, Rob’. But it took 5 or 6 days of seeing all sorts of people and doing all kinds of tests for them to say, ‘You’ve got Junior Parkinson’s syndrome.’ And that was the start of this journey really.” Rob was 29.
Rob acknowledges it’s always at the back of his mind how his Parkinson’s might progress. But when he received his diagnosis, he knew he had to make the most of his future. He explains, “I could have sat there and thought it’s only going to get worse. But if I’d done that, I wouldn’t have lived the life I’ve had. And because I was so young, I definitely told myself, ‘Right Rob, fast track your life. Get on with it while you’re young.’”
When you find out you have Parkinson’s, especially if you’re young, your whole world can grind to a halt. You have to think about your job, your family. For me though, it was the other way round because I started with it anyway!
Settling down
Rob was single when he was diagnosed, but he met his wife, Jane, 7 years later while working together. Rob and Jane went on to have a son, who is now in his twenties, and has never known his dad without Parkinson’s.
Rob smiles: “When you find out you have Parkinson’s, especially if you’re young, your whole world can grind to a halt. You have to think about your job, your family. For me though, it was the other way round because I started with it anyway!
“I didn’t go round telling everyone I had Parkinson’s, but I didn’t hide it either. Jane knew about it from the beginning of our relationship,” says Rob. “I had a tremor, but apart from that, I was doing OK. Obviously we were in our thirties then and didn’t understand the implications at the start.”
Rob and Jane have now been married for 27 years and he admits it hasn’t always been plain-sailing. “There’s been some real issues because dealing with me and dealing with the Parkinson’s can be two completely different people. Sometimes I’ve been an absolute monster and she would have every right to have left me,” admits Rob.
“But because we knew what problems were related to Parkinson’s, we’ve managed to get past it. What we’ve always had is being able to talk about things. And if you can talk about things, then you can sort them out.”
...the day I accepted Parkinson’s for what it is was the day I started living - which is a very simple thing to say and a very hard thing to do.
"Now, every day is important..."
Rob is now 63 and has lived with Parkinson’s longer than he has without it. “At one time I thought to myself that the diagnosis would stop everything in my life. I spent a lot of time soul searching, trying to fight it.
“But the day I accepted Parkinson’s for what it is was the day I started living - which is a very simple thing to say and a very hard thing to do,” concedes Rob.
“Parkinson's has taken a lot from me. It has often been like an unwanted friend who I can’t get rid of and have to put up with. But it has also focused my mind on the important things in life - like family, or even appreciating a cup of tea.
“At one time, I didn’t pay attention to anything, life was just life. Now, everyday is important because everyday is a struggle,” says Rob. “I’ve got dyskinesia, I have lots of aches and pains and I don’t have a lot of energy. I used to fall over a lot at one time. I had some crashing falls and how I’ve survived this long, I do not know!
“But I believe Parkinson’s has always been a part of me. It could have been anything - cancer, another serious illness. It’s nature, it’s random and you don’t have any choice in it.
“I know it’s a hard thing to bite into and to have to carry with you - it can be overwhelming. But you can’t think you are going to be Superman forever - I’ve gone through that stage!” Rob laughs.