Parkinson’s – Heidi’s Story
Heidi, 39, received a shock Parkinson's diagnosis two years ago
Every hour, someone in the UK is told they have Parkinson’s. It affects 127,000 people in the UK, which is around one in 500 of the population. As the world mourns the passing of boxing legend Muhammad Ali, who famously suffered with Parkinson’s disease, Health on Top takes a closer look at the debilitating effects of the condition.
Parkinson’s is a progressive neurological condition. Sufferers don’t have enough of a chemical called dopamine because some nerve cells in their brain have died. Without dopamine, people can find that their movements become slower, so it takes longer to do things. The loss of nerve cells in the brain causes Parkinson’s symptoms including tremors, slowed movement and speech, fatigue, depression and constipation. There’s currently no cure for Parkinson’s, and we don’t yet know why people get the condition. Parkinson’s doesn’t directly cause people to die, but symptoms do get worse over time. But it’s a disease older people get, isn’t it? That’s what Heidi Reynolds, from Chelmsford in Essex, thought. Unfortunately, Heidi was wrong. Like her, there are many younger people living with the condition in the UK.
Heidi, 39, was diagnosed with Parkinson’s when she was just 37. For Heidi, getting to that diagnosis was not straightforward. She first experienced Parkinson’s symptoms in 2010. She had four unnecessary operations on her shoulder before eventually getting her diagnosis in 2014. Heidi says: “I think part of the problem is health professionals don’t expect a relatively healthy 37-year-old to walk into their surgery with Parkinson’s, so they weren’t looking for it.
“I had so many different treatments that just didn’t work, but at the same time the doctors couldn’t understand why I was experiencing pain and trouble with movement.”
“It got to the point where I doubted myself. Was I making it up? Did I really have something wrong with me? But, deep down,I knew something wasn’t right”
When the diagnosis finally came, Heidi had mixed feelings. “It was almost a relief to know what was actually going on. I could finally take control. I wanted to go to the many doctors I’d seen and say: ‘See, I wasn’t making it up!’ “It was a massive shock to be diagnosed with something you think only affects older people. At just 37 years old, my neurologist told me the condition is degenerative and there
is no cure. Thankfully, during those first few weeks, and ever since, I had my husband for support. I went to ground a little bit and didn’t want to go out as much.” Heidi’s experience backs up recent findings by the charity Parkinson’s UK, which says 42,000 people in the UK have delayed sharing their diagnosis, with 37 per cent of sufferers having felt the need to hide their symptoms or lie about having the condition. Heidi adds: “I like to think I’m a strong person, but I was still getting my own head around the diagnosis. I felt it was too early to take on other people’s emotions while I was trying to deal with my own. I knew that I would be fine, but I needed time.” Treading a new path.
Life has changed massively since Heidi got her diagnosis. She had to give up a career that she loved in the Metropolitan Police. But having started a fitness journey just six months prior to her symptoms starting and losing four and a half stone, exercise continues to be an important part of her life alongside volunteering to raise awareness of the condition. “I’m a strong believer in exercise to help with my Parkinson’s symptoms. I am also passionate about raising awareness of Parkinson’s. People think it is ‘just a tremor’ but actually, it can affect everything.” Now Heidi volunteers for Parkinson’s UK, supports social media for the Young Parkinson’s Network and has set up her own Facebook group, Start Living Today PD, to help other people affected by the condition. She adds: “My life has changed so much in the last year, but I can honestly say I’ve never been more content and fulfilled. That’s not to say that life with Parkinson’s is straightforward.
Just when you think you have the measure of it, it can throw something completely unexpected at you. “But I choose to be positive and focus on what I can do. The time I give to my voluntary work has let my self-confidence grow, and I have never felt more appreciated.”
In September, Heidi will be walking 25km (15.5 miles) across London’s bridges to raise funds for Parkinson’s UK. You can
sponsor Heidi at www.justgiving.com/Heidi-Reynolds. Youngparkinsonsnetwork.com is an online community of working-age people living with Parkinson’s disease. Parkinson’s UK is the nation’s leading charity supporting those with the condition. Its mission is to find a cure and improve life for everyone affected by Parkinson’s through cutting edge research, information, support and campaigning. For advice, information and support, visit www.parkinsons.org.uk or call their free, confidential helpline on 0808 800 0303.