April 11, 2022
Newsflash: Young(ish) People Like Me Can Get Parkinson’s Too!
Busting popular myths about Parkinson’s disease
International Relations Manager at YUVEDO FoundationGuest
When you think of Parkinson’s Disease you likely think of an old person in their final years, shaking and bent over. That may sound flippant, but I’m an honest type. And to be (very) honest, that’s what I thought too – until I was diagnosed with the disease at just 38 years old. I will never forget the Friday afternoon when my doctor casually announced, “it’s Parkinson’s or a brain tumor; come back on Monday and we’ll run more tests." Since that day, I have been on medication constantly, have quit my job and have undergone brain surgery while awake. If you had told me in my early 30s that this was coming, I would never have believed you, and never have thought I could deal with it.
But that is where the eternal optimist comes in. Since the day of my diagnosis, I have been determined not to let it define me. For the first few years, I was busy dealing with the knowledge that I had an incurable disease and adjusting my life accordingly. After a while, I started to engage with the patient community and have found wonderful friends and supporters who are united in their determination to get on with life and enjoy it. And enjoy life I do.
Busting Myths and Misconceptions
This is why on World Parkinson’s Day I would like to highlight some of the myths around Parkinson’s Disease and why it is so important to “bust” them so we can work towards not only a better understanding of people with Parkinson’s but also move closer towards a cure. As a patient advocate, my goals are to inspire others by showing that life can be good despite this burden, to raise awareness about the fact that Parkinson’s is the fastest growing neurological disease in the world and to fight for more funding and research so we can finally find a cure. One of the organizations I work with – the Yuvedo Foundation – is fighting to put Parkinson’s firmly on Europe’s political agenda so that we can truly see change.
Myth One: Parkinson’s Patients are Always Old
Yes, statistically a typical Parkinson’s Disease – or “PD” – patient is male and over 60. But every year younger people are diagnosed too. Anyone younger than 50 is considered to have young-onset Parkinson’s, or YOPD – and five to 10% of all Parkinson’s patients are YOPD. However, the rate may be higher, as there are indications that YOPD is often misdiagnosed. Doctors do not expect to encounter PD at this age. Symptoms such as stiffness and rigidity are frequently put down to sport injuries or stress. And women particularly can be diagnosed late as they are less likely to seek help and their symptoms are ignored for longer.
Myth Two: Parkinson’s Patients Can’t Move Around Much
Not true! Yes, moving becomes more challenging. It can be tough to motivate yourself to get up and get going when every muscle feels stiff. To do yoga when your lack of balance makes you the first in the class to fall over when you do the tree pose. When you need to concentrate not to drag your leg behind you when you go for a walk. But you must move. Movement and exercise are the only thing proven to slow the progression of PD. Let me say that again: none of the tablets I take, or the electrodes placed in my brain can slow progression, they can only mask the symptoms. Exercise has this power. For me, cycling and swimming are the two sports where I feel most normal. I can cycle for miles with no difficulty and in the water I feel free.
Myth Three: Parkinson’s is Parkinson’s, No Matter Your Age
Not true. Parkinson’s is sometimes known as the “snowflake disease.” No two people experience exactly the same symptoms and progression. Some people develop strong tremors in one hand and cannot carry two things at the same time (makes getting rounds in the pub tough) and others freeze suddenly and cannot move their feet (not great on a busy crossroads.) Others suffer from sleeplessness (Parkinson’s chat groups are surprisingly active at 4 a.m.). Young onset symptoms are also clinically different, with this group facing more problems with dyskinesia (involuntary movement). And then there is the whole social impact. When I was diagnosed, I had two young children and a full-time job. Dealing with the words “you have an incurable disease” alongside the usual challenges that relationships, careers, family planning and finances bring with them in your 30s and 40s, adds a whole new dimension to life.
Myth Four: Parkinson’s is Hereditary
Well, this is not really a myth as such. The truth is, we don’t really know. It was one of the first questions my daughter asked when she was old enough to understand the implications of me having PD. “Will I get it too, mum?” The honest answer is, we are not sure. There are some genes implicated in Parkinson’s and I did not test positive for these. However, we can only test for the genes we know. There are numerous factors that can contribute to someone developing Parkinson’s. Environmental factors, especially pesticides, are being implicated more and more. There is still a lot to do in finding out what causes it and above all, how we could stop it – and we do need to stop it. One in 15 men in the Western world will develop PD in their lifetime. This will not only be a huge emotional burden, but also a financial and economic burden for society.
Myth Five: Parkinson’s is Fatal
It’s not. You don’t die of Parkinson’s. Particularly if you are diagnosed young, you live with it for many years. The average life span of a person with Parkinson’s is the same or near the same as someone without Parkinson’s disease. Parkinson’s is currently the 19th cause of death in the United States – you are more likely to die of poisoning than of PD. However, while Parkinson's itself is not fatal, disease complications can be serious. The two biggest causes of death for people with Parkinson’s are falls and pneumonia. Again, taking charge of your own fate is essential here: regular exercise, a good diet, voice training to combat swallowing problems – all contribute to a longer life.
As a patient advocate, I see how people with Parkinson’s are misunderstood every day. This is understandable but if we want to move towards finding a cure, we need to improve communication between patients, physicians and research. We need to invest in clinical trials, in developing digital biomarkers (to measure the progression of PD), and we need a sense of urgency so that society is not crippled by a neurological pandemic in the near future. I am optimistic that Parkinson’s will become a disease of the past in my lifetime – but we’ve a long way to go.
International Relations Manager at YUVEDO FoundationGuest
Diagnosed at 38 years old with Parkinson's, “eternal optimist” Cathy has become a passionate speaker on the topics of patient advocacy and patient centricity.