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12 Ways Having Parkinson's In Your Twenties And Thirties Changes Your Life

"There are more of us than you'd think juggling the condition with careers, young families, travel aspirations."

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We spoke to five people who were diagnosed with young onset Parkinson's between the ages of 8 and 42.

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.

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

Instagram: @ems_lawton

"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

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

Rob Evans

"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

3. For some, it means changing their routines dramatically.

Courtesy Heidi Reynolds

"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

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4. Life is not as predictable as it used to be.

Parkinson's UK / youtube.com

"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

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

Mike South / Instagram: @https://www.instagram.com/mikesouthmakes/?hl=en / Via Parkinson's UK

"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

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

instagram.com

"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 Hazell

7. The condition might mean someone has to take a step back from their career or retire altogether to manage their symptoms.

Gemma Day / Via Parkinson's UK

"I was an M&A [merger's and acquisitions] lawyer absorbed in a stressful and demanding City job, but I've had to cut back on the hours and change the nature of my role so that it can fit within my symptoms." – Nick Hazell

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8. Not everyone with Parkinson's shakes.

Instagram: @startlivingtodaypd

"Parkinson's is such a complex condition with such a varied set of symptoms that it almost shows differently in every person. Symptoms range from tremor and stiffness all the way through to temperature control and depression." – Emma Lawton

9. And there's much more to it than the physical symptoms you can see.

Rob Evans

"There are so many non-motor symptoms that also affect patients and their general wellbeing that are never highlighted, like depression, anxiety, apathy, sleeplessness, constipation, speech issues, and memory issues." – Matt Eagles

Matt underwent deep brain stimulation surgery in 2006: "It involved inserting electrodes directly into my brain and then attaching them to a neurostimulator or ‘brain pacemaker ‘ which would sit on the wall of my chest. The surgery was a success and its effects were life-changing. I was able to get up in the middle of the night and go to the bathroom without crawling on the floor and weeing in a pot. It gave me my dignity back! I have since become a brain stimulation advocate, speaking to patients considering the surgery to help them make an informed choice of their own."

10. It doesn't affect everybody in the same way.

Instagram: @startlivingtodaypd

"Parkinson’s is very bespoke. You may know someone with it, but each person’s journey and symptoms will be unique. There are some mainstream symptoms but how and which you get are all part of the big Parkinson’s lottery." – Heidi Reynolds

"Whilst I might meet another person in their thirties who has been diagnosed with the condition, their symptoms might be completely different – for instance, they could have more cognitive issues or bladder weakness or even depression." – Shamsa Hussein

11. Parkinson's affects your relationships with those around you.

Courtesy Nick Hazell

"It's had a huge effect on my family life, some of it actually positive.  I'm married to Victoria and have two young children Anna (12) and Lara (8). We've been open with the girls about the condition and how it means that there may be times when I'm slower or frustrated with the limitations that the condition brings with it, but it has also meant that I've now got the opportunity to spend more time with them and do things as a family. This was something that was not so easy when I was perhaps overly devoted to my career." – Nick Hazell

"In all honesty the biggest aid is the support and patience of other people." – Emma Lawton

12. Life goes on, and there's no need to beat yourself up about it.

Shamsa Hussein

"Parkinson’s worms its way into every crevice of your life but you have to look for the good in each day, fight back through diet and exercise." – Heidi Reynolds

"It's been a rough journey and I don't know what the future holds, but I have stopped beating myself up about the fact that I got Parkinson's. Yes, I didn't ask for it. Yes, it sucks. Yes, every day is a challenge. But everybody is facing some kind of struggle and this is mine. It's not ideal but it is what it is. I'm allowed to have bad days, I'm only human. But I can't stay in that bad place for too long because it’s not a healthy place to be in." – Shamsa Hussein

Thanks to Parkinson's UK for their help with this post. If you want to find out more about living with young onset Parkinson's, Emma Lawton is vlogging every day for a year about her experience.

Kelly Oakes is science editor for BuzzFeed and is based in London.

Contact Kelly Oakes at kelly.oakes@buzzfeed.com.

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