Hi, I’m 38 years old and I’ve got Parkinson’s

By Amneet Kaur

Both the Library of Birmingham and Birmingham Cathedral were illuminated cyan on April 11 to raise awareness on World Parkinson’s Day.

It’s a national day to recognise the condition and effects of it.

Charity Parkinson’s UK revealed 86% of people with Parkinson’s in the West Midlands say they have faced harassment and discrimination due to the disease. Over half avoid or cancel social situations due to negative experiences and 28%  had been told they were ‘too young’ to have the condition.

One of them is Nicky Doyle, a 38-year-old mum-of-two from Hartlebury.

She said: “My son William will give me a cuddle and say ‘mommy, why are you shaking?”

“I would say because mommy is a bit special.”

Nicky was diagnosed with Parkinson’s just before her 34th birthday, but her symptoms had started when she was only 21.

“The thing I care about is that I had Parkinson’s since I was 21, and they missed it for so many years,” she said.

“I understand why they did, they’re used to looking at somebody older with Parkinson’s compared to me and I’m completely different to what they’re used to.

“It’s not a fantastic condition to have, it can take your senses away, your walking abilities, your facial expressions, it can take a lot away from you. You struggle to dress yourself, feed yourself, the normal things that you probably take for granted in life. And those things for me are the big things that I aim to do every single day in my life.

“When you’re younger you have an opportunity, you’ve got more energy and you can exercise, exercise is the key and many people don’t know that.”

Nicky explained that it is hard to tell she has Parkinson’s when her medication is working well, but admitted that during off periods she faced harassment.

“I’ve had people laugh at me when my symptoms have been visible, and get people staring or tutting if I’m in a shop and taking too long to do something,” she added.

“The worst experience I had was when I was at V Festival, and a guy came up to me and said, what’s up with you? Are you drunk or are you on drugs?  I said, “no I’m not drunk, I’m not on drugs, I’ve got Parkinson’s,” and I told him where to go. It knocks your confidence when things like this happen.

“Two years ago I would have introduced myself to people saying hi I’m Nicky and I have Parkinson’s to just get the atmosphere out of the way, but now I don’t because I realised I’m Nicky, I’m not Parkinson’s.”

She said many people’s reaction after revealing about her condition would be shock, presuming she is too young.

Over the years Nicky had to change her thought process on how to deal with her condition, she learnt with time to worry a bit less and focus more on the present, and said she did it for her children.

“I turned the corner about a year ago when I couldn’t cry anymore,” she said.

“One day I was having a really bad day, I wanted to get back to bed but then I said to myself  ‘No Nicky, you are not going to bed, you’re going to the gym, and you need to start picking yourself up’ and I did.

Another major change was Nicky’s work.  She used to be self-employed but realised she didn’t want to do it anymore.

When said: “When I started to look for a permanent job within a company I was really worried about how employers might react to my diagnosis, I questioned myself asking – am I employable?  Will they discriminate against me?

“But I needn’t have worried.  When I told my new employer DRPG about my Parkinson’s they were nothing but supportive.

“Not one person has ever asked me why I shake, whereas I could walk out of the building and go to Sainsbury’s and people would look at me just shaking slightly.”

Phil Smith, a 38-year-old father from King’s Heath, Birmingham, lives with similar frustrations.

Phil was diagnosed at the age of 36, when he started experiencing problems with the function of his right hand.

“I’ve got a son who is nearly 4, a partner and a full time job,” he said.

“It came out of nowhere and I thought it was maybe a trapped nerve or something, to be told it was Parkinson’s really hit me hard. It wasn’t even on my radar, I didn’t know what it was and to be told I’ve got it sounded horrific and horrendous.

“You feel very tired inside, on one level you still feel like a very young person; people say to me you are only 38, that’s a no age at all. I have conversation with people that are in their 80’s and we have very similar experiences, my mind says you can do this but my body says no you can’t, it catches you out sometimes.

“Parkinson’s is the worst hangover you ever had but without drinking. Aches, pains, struggles in doing anything, noxious, tired, feeling dizzy.

“My biggest concern is how long can I work full time for because I want to work, I don’t want to be a burden on anyone and I have a sense of pride with myself, rather than being relying on people. Parkinson can take away your dignity and I want to delay that as much as possible.”

One thing helping Phil to deal with his condition is comedy, he recently started to perform during open mic sessions and he uses this as an opportunity to make fun of his condition.

Nicky and Phil are the faces of young onset Parkinson’s disease, an illness that’s often overlooked. Charity Parkinson’s UK revealed 12,300 people live with Parkinson’s in the West Midlands and in the UK there are 1,757 people under the age of 50 affected by it.