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

This article was originally published in Buzzfeed.

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.

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

“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

Not everyone with Parkinson’s shakes.

“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

There’s much more to it than the physical symptoms you can see.

“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.”

It doesn’t affect everybody in the same way.

“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

Parkinson’s affects your relationships with those around you.

“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

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

“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