6 Ways Having Parkinson’s At A Young Age Changes Your Life

This article was originally published in Buzzfeed.

Parkinson’s disease affects 1 in 500 people in the UK. Most are over 50 – but, according to the NHS, 1 in 20 people with the condition first notice symptoms when they’re under 40. Some people get diagnosed even earlier than that.

Shamsa Hussein, now 32, was diagnosed at 28; Emma Lawton, 34, was diagnosed at 29; Heidi Reynolds, 41, was diagnosed at 37; Nick Hazell, 44, was diagnosed at 42; and Matt Eagles has been in treatment for Parkinson’s symptoms since age 8 and is now 48.

For some people, a Parkinson’s diagnosis doesn’t stop them from doing everything they could do before.

“I still really push myself, so my activity levels day-to-day are pretty much identical to what they used to be. Everything takes a little bit longer though and is a little bit more difficult, so I really should leave more time to get things done but I don’t and I am always late!” – Emma Lawton

But basic tasks tend to be more difficult than they were before, and take longer.

“It affects every aspect of my daily life from getting up in the morning and trying to balance in the shower, then nicking myself shaving, getting dressed, putting my socks on in particular. Going downstairs to make my wife a cup of tea and throwing milk and sometimes the whole drink all over the work surface and myself because my arms suddenly twitch.” – Matt Eagles

“It slowly but surely robs you of your independence. You are forced to slow down and work at the pace of your body. In your head you feel like you could climb a mountain, but in reality (when your meds are not working) you struggle to even write the word ‘mountain’ in a legible manner.” – Shamsa Hussein

For some, it means changing their routines dramatically. 

“I catheterise four times per day, [because] my bladder muscles inconveniently forget to mention when we need to “make a trip”! I drink thickened liquid and eat a softened diet. Whatever classroom window my bladder muscles are staring out of gormless and inanimate, my throat muscles are best friends with them. The liquid being thicker means my brain has time to work out that liquid is ‘inbound’ and can shut off my airway. The alternative? I choke. Likewise with food my throat is uncoordinated, one side trying to push food up the other down. But with crisps, bread, and other nice things on the no-swallow list, cake is still a green light (thank goodness: I’m a total cakeaholic).” – Heidi Reynolds

Life is not as predictable as it used to be.

“I have to take medication at specific times and a whole range of factors can affect how well they work (what I’ve eaten, how much I’ve slept, what kind of mood I’m in), so every day is really hit or miss as to how bad my symptoms will be. I tend to plan as if I’m going to be okay and then deal with it if I’m not. … I end up taking a lot of taxis!” – Emma Lawton

“You can’t plan your day with any degree of certainty or commitment, because at any time the effectiveness of your medication might wear off and in the back of your mind, you know that at any minute you’re going to turn into 82-year-old ‘Ethel’ (your unmedicated Parkinson’s alter ego)!” – Shamsa Hussain

People can jump to the wrong conclusion when they see a young person with Parkinson’s.

“There are more of us than you’d think juggling the condition with careers, young families, travel aspirations, etc. People just don’t think of Parkinson’s when they see a younger person with movement problems – they think you’re shaking because you’re nervous or stumbling because you’re drunk.” – Emma Lawton

Being young means living with the complications of Parkinson’s for longer.

“Those with young onset Parkinson’s must live longer with the complications of this diagnosis but may have a family to support, a mortgage to pay, a career to pursue. Being diagnosed at an early age means that issues around employment, financial security, relationships, family life, and future ambitions become much more relevant. In fact, these issues require as much attention and support as the medical symptoms and I don’t think we’ve quite got this right in the UK yet.” – Nick Hazel