Patient Perspective on Brain Health Series
Living Well With Parkinson’s Disease
I am not entirely sure when it started – that is the thing about Parkinson’s – you don’t know you have it until you have it.
I only started thinking about my health in 2007 when my Dad passed away. Up to that point, I was working as an HR manager with a young family and all the usual issues like school runs and music classes so I was reasonably active. My Dad died of prostate cancer and that prompted me to start taking more notice of my own health.
I started to notice that my right hand was getting sore but put that down to repetitive strain from using my computer mouse. I went to a physio who gave me some exercises but after a few months, it still was not getting any better.
By 2008 I had trouble moving my hand voluntarily and my writing had become really small, to the point where I couldn’t read it myself. It is amazing all of the things you take for granted like being able to pick up a pen and write. I started to realise that I needed to take this more seriously and went back to the Physio who then referred me on to another consultant and eventually to a movement disorder specialist. That specialist told me “well I can’t see anything wrong with you so I am going to discharge you, have you any follow-up questions?” I reiterated my problem with my arm, which at that point was hanging limp on my right-hand side – it no longer moved when I walked. On hearing this, he asked me to walk up the hall and when I came back, he said casually “You might have young onset Parkinson’s but don’t worry, it is eminently treatable with medication”. He proceeded to discharge me as he was aware that I also had an appointment with a consultant neurologist shortly so I took this to mean that it wasn’t very serious as it had all been so casual and I was discharged.
Finally Getting A Diagnosis
“Yes, you have got Parkinson’s Disease but don’t worry, it won’t kill you”
The consultant neurologist did a simple movement test with my arms and said “Yes, you have got Parkinson’s Disease but don’t worry, it won’t kill you”. I struggled to believe it – I had always thought that Parkinson’s was an older person’s disease, I was only 44 years old. He told me that he diagnosed a 29-year-old girl the week previously and that really put it into perspective for me. My kids were 15 and 9 at the time, I had no idea of what this would mean for all of us. There was no support, no one to talk to – I simply left the office in a daze and made my way home.
I don’t quite remember that journey but I did manage to get home and tell my wife. After the initial shock, we both dissolved into tears and it was in that split second that everything changed. My confidence collapsed, my outlook became foggy, the future I had taken for granted suddenly felt so limited. I went into complete denial, shutting down everything and just blindly taking the pills that were prescribed to me. I wasn’t ready yet to speak about it publicly so I continued to work as normal.
However, that was where the ‘fun’ of Parkinson’s started. The pills I was prescribed needed to be taken 12 times a day and were supplied in blister packs. This meant that I had to take them during the day at work but just imagine what that looked like – fumbling, shaking and furiously trying to access these pills covertly while at work – I wondered were these drug companies having a laugh at Parkinson’s patient’s expense or had no one seriously thought about how difficult this is? Even if someone had been able to hand me the tablet they were so small and once or twice one went flying onto a colleague’s desk as I was struggling with fine motor movements – it was a daily battle. It took the Parkinson’s community a long time to convince the pharma companies to put the tablets into a tub!
I managed like this for the first few years, my health was deteriorating but I managed to stay under the radar. However, my job was high stress with a lot of travel and it was starting to take its toll. Any stress in your life will eat up your dopamine and worsen your symptoms. Eventually, five years after my diagnosis I told my boss. He had noticed that I had become quite stooped over that time and was starting to have difficulty with walking, slightly dragging my right foot. Interestingly, this didn’t affect my running – I found it easier to run than to walk.
After opening up at work things started to get difficult. They needed more from the position than I was able to give at that point so I was moved to a side that further deteriorated relations. Not long after my initial diagnosis, I switched consultants and my new doctor has been fantastic. He eventually intervened as the stress of this work situation was eating up my dopamine stores – he insisted that I needed to make a change. I was incredibly fortunate that the company I worked for had an income protection plan for situations just like this. At first, it was hard to accept, my job had been such a huge part of my life but the reduction in stress while still being able to support my family lifted a huge weight off my shoulders – I know not everyone is fortunate enough to have access to this.
My Turning Point
“I learned how important my voice was and that I needed to both protect and project it to help others.”
This was another pivotal point in my journey. Up until then, I had been deteriorating quite rapidly as I tried to continue as normal but once stress, deadlines and secrecy were out of my life things started to improve almost instantly. I was able to focus on exercise which had huge benefits for me and enroll in an intensive speech and language therapy course – LSVT Loud. That course was incredible, despite the fact that my wife is a speech and language therapist, I had not faced up to needing the therapy before then. She had noticed that my voice was failing and insisted that I needed to take control and speak up. The course was four days a week for four weeks and it was from that point on that I learned how important my voice was and that I needed to both protect and project it to help others.
Being involved in conversations is very important because social contact and stimulating activity keep your brain ticking over. It is so easy to become isolated as a result of this diagnosis, I have found community to be a huge part of staying well with Parkinson’s. I live by three tips for brain health given to me by a good friend who is also a professor:
1. Have a conversation. I now prioritize community and friendships.
2. Have a hobby. I love to speak up for Parkinson’s and listen to great music.
3. Smile. Smiling releases endorphins and gives your brain a lift so I take every opportunity to laugh as much as possible.
I am not cured but I am better – so much better than when I was first diagnosed.
I am as physically fit as I have ever been and though I am deteriorating neurologically, physically I feel great. In fact, I did the Dublin City Marathon last year for the first time ever. I never would have thought of doing that before my diagnosis.
I feel so passionate about getting the message out that Parkinson’s is a big change but it is possible to live well with it. My initial experience after diagnosis was exceptionally difficult, there was no outlook, no support, just medication and a ‘deal with it’ attitude. After switching consultants, all that changed. He arranged a huge array of supports and services to give me the best possible outlook on life. I want this to be everyone’s experience. I don’t want anyone told “sure it won’t kill you” and sent out into the world in shock to self-adjust to an alien and uncertain new reality.
Building Awareness & A Better Future
Building awareness is critical because there is a huge information and power asymmetry between consultants and patients. Parkinson’s patients need help to both understand and advocate for what they need. This need for awareness extends far beyond the patient to their families and carers and the general public. My experience has been that people are incredibly kind and supportive when I’ve spoken up – they want to understand and help when given the opportunity. The challenge is being heard through all the noise.
We also need far better communication and support from consultants. Many patients drive for hours for their consultant appointment once a year, sit in a waiting room for hours and then meet a registrar who takes the same patient history they have taken for years and send them back home again. If they are lucky they get to see their consultant for a few minutes only to be told “Your condition is progressing”. Of course it is, that is what it does.
We need full multi-disciplinary teams supporting people who are living with this disease. I understand how time-constrained consultants are but there needs to be a better, more holistic system that puts less strain on all involved while supporting the Patient. Simply having support professionals assisting the clinicians, so Patients are seen and cared for as a person as well as being treated for the clinical elements of the disease would be a huge step forward.
As a board member of Parkinson’s Europe, I get to meet really great people who are also fighting to promote awareness of and access to supports and services for Parkinson’s Patients. Globally we have an aging population and Parkinson’s’ is an age-related disease that happens to be the fastest-growing neurological condition in the world today. We need to fight for political recognition so we can access the resources and systems necessary to provide better support and services at the point of diagnosis and beyond.
My hope for the future of patient care for Parkinson’s is that no one ever leaves a diagnosis appointment without a plan for multidisciplinary care, and the sense that although this diagnosis is life-changing it is not life-ending.