How my friends support me when I have Parkinson’s
Rob has lived with Parkinson’s for five years. Part of a close friendship group who have known each other for over 20 years and bonded through a love of sailing, mountain biking and getting outside, Rob talks about how his friends have rallied round him since his diagnosis.
And we hear from his friends Andy, Tony, Lyn and Zoe about how, to them, Rob will always be the same Rob.
Rob
I’ve known many of my closest friends since our early twenties when we worked together in the holiday industry.
In our group, we’ve had mountain bike accidents - one friend is now in a wheelchair, another guy has broken his back. We’ve also had broken shoulders and broken wrists. We’ve had cancer. And then I come into the mix and say I have Parkinson’s - we call it top trumps!
But I’ve got such an amazing friend group. Just the other day, one of my mates came round at lunchtime to pick something up. I was stuck on the stairs because my pills hadn’t started working yet and I was having dystonia. He saw me and said, “Alright mate, let’s get you sorted.” He helped me upstairs and then offered me a cup of tea. When I said he needed to get back to work, he said it wasn’t a problem. He was just there.
That’s just one story, but all of them at one stage have done something like that.
Andy, Tony, Lyn and Zoe
For all of his friends, Rob’s diagnosis came as a shock. “Especially because of his age,” says Tony. Zoe agrees. “He was so young and it just didn’t seem fair for such an active guy.”
“We knew that he was having issues with a bit of stiffness and mobility on one side, but we never suspected it could be Parkinson’s,” admits Andy. “But initially the symptoms were barely noticeable, so we had no idea what it really meant.
“That was a few years ago though, and my feelings towards it have certainly changed. It’s difficult seeing him struggle sometimes and I hate the condition for that. It’s frustrating that there is not more that can be done to control his symptoms and the side effects of the drugs he is on.”
Out and about
The group are all still passionate about getting outdoors. Lyn says: “It’s the active things we love to keep doing - finding new places to paddle to or meeting up for a quick spin around the forest. Rob will tell us how long he can go for, when he needs to take his meds and when he needs to rest.”
So flexibility remains key, as Andy says: “A bit of thought has to sometimes go into what is done and when, but it’s just a question of working around the best time of day for him.”
And letting loose at parties is also a common theme. “Rob still likes to jump around at parties once his medication has kicked in,” says Zoe. Jumping should not be confused with anything else though. “It would be wrong to call it dancing!” Tony laughs.
Tony (left) says that he thinks that sometimes you wouldn’t know that Rob (right) has Parkinson’s. At other times, he says, Parkinson's can reduce how much Rob can do, but there’s never any pressure. And when they're out as a group, they tend to stick together. If someone has had enough, the pub is always a good option.
Support
Rob has always talked openly about his diagnosis with his friends from day one, although asking for help hasn’t always been easy for him.
“Rob’s more ready to accept help than in the early days,” acknowledges Andy.
“But Rob is still very independent,” continues Tony. “So I try to ensure that he knows I’m there to help if needed. Once we were windsurfing and Rob was tired when he finished. He said he was OK, but I knew he needed a hand with his kit."
Sometimes Rob needs a gentle reminder that people around him can help him deal with the challenges he faces - and use what energy he has got for the fun stuff.
Friends first
After two decades of friendship, the group are clear that Parkinson’s doesn’t define Rob or their relationships with him. “Most of the time we forget Rob has it,” says Zoe. “It’s just when he’s having a bad day that you are reminded. To me he’s just ‘Rob’, not ‘Rob with Parkinson's.”
Andy agrees. “Parkinson's hasn’t got anything to do with friendship in my opinion - he is a mate first who also happens to have Parkinson's.”
“For Rob it must be hard to try and just be Rob,” says Lyn, “But he keeps on making the effort to do the things he loves and is truly inspirational.
“We are all getting older and none of us know what we will be able to do in the future,” she concedes, but it’s clear whatever challenges Rob faces in the future, his friends will continue to be by his side.
As Tony says simply: “Wherever his journey goes, he will always have us with him.”