Today is World Parkinson's Day. So, we’re shining a light on Parkinson’s - the fastest growing neurological condition in the world. About 145,000 people in the UK live with a Parkinson’s diagnosis in the UK.
What is Parkinson's?
Parkinson's is a progressive neurological condition. Parkinson's develops when cells in the brain stop working properly and are lost over time. These brain cells produce a chemical called dopamine. Exactly what causes Parkinson' is unclear. We don't yet know exactly why people get Parkinson's, but researchers think it's a combination of age, genetic and environmental factors that cause the dopamine-producing nerve cells to die.
Symptoms start to appear when the brain can’t make enough dopamine to control movement properly. There are three main symptoms - tremor slowness of movement and rigidity (muscle stiffness) - but there are many other symptoms too.
“In terms of symptoms, I experience tremors, stiffness, shuffling gait, delayed cognitive reactions. On a more practical level, everything needs a plan and it's absolutely exhausting.” Lucy Beaty
Not everyone with Parkinson's experiences the same combination of symptoms – they vary from person to person. How Parkinson's affects someone can change from day to day, and even from hour to hour. Symptoms that may be noticeable one day may not be a problem the next.
“My Parkinson's is often misinterpreted. People have assumed that I'm drunk or that I have a back injury as my condition can cause me to stumble. These assumptions are made because my disability is invisible.” Lucy Beaty
There's currently no cure for Parkinson's, but there are lots of different treatments, therapies and support available to help manage the condition. Many people with Parkinson's lead active and fulfilling lives. An important part of coping with Parkinson's is understanding how it affects you and how to work around it.
“Dad’s journey with Parkinson’s began in his early 60’s. With Parkinson’s being a degenerative condition, as he aged, his symptoms got worse. Of all Dad’s symptoms, alongside his loss of mobility, the one he found most frustrating was his stutter. Parkinson’s is a neurological condition that leads to a reduction in the production of dopamine. Dopamine is the chemical used by the brain to produce smooth, purposeful movements. So along with movement, it affects the facial muscles used to produce speech. Apparently, Dad stuttered when he was a child, and as Parkinson’s developed more, speech became very challenging. He regularly attended speech therapy and they provided breathing strategies and exercises, which did help but was never going to redress the balance caused by his condition.
Dad was always a joker, with a smart comment or silly story. He would continue to tell his jokes, but as he got closer to the punchline, his stress levels would increase and his stutter would get worse. So Dad's jokes became visual. His attending a family function in fancy dress was common. This meant his stutter didn’t get in the way and he still got to do his most favourite thing, which was to make people laugh. Phone calls were a challenge, but we spoke regularly on the phone, as not to do so would have been isolating.
Personally, I have learnt patience and understanding from my conversations with Dad. Consciously ensuring I did not ‘butt in’ when he was struggling to speak and letting him finish. And, of course, always remembering to laugh at the punchline." Paul White, Hidden Disabilities Sunflower.
Support & the Sunflower
If you have Parkinson's, you might consider wearing the Sunflower to discreetly indicate to those around you that you have an invisible disability and may require patience, understanding and support.
We want people with Parkinson’s, their families and friends across the country to know that they are not alone. There’s a whole world of support out there. Parkinson's UK is a great place to find out more about the condition, treatments to manage the symptoms and discover support networks.