Dealing with Diagnosis
I saw something recently which said, "you only start living when you realise you only have one shot at it". With all due respect to reincarnation, this quote had a strong impact on me. We have all seen motivational quotes like, "live like there is no tomorrow" or " treat each day as your last", but we also know that there are consequences, so you can't go and place all your money on a horse in the 3 pm at Belmont. However the realisation that this is it, we are in the final furlong and we only have one chance to get it right had a profound effect on me, and the catalyst for that was my diagnosis with Parkinson's.
Before that, I'd have to say I took life for granted a bit. I'd have to pinch myself now and again to realise how good I had it. Loving wife, great family, steady job, good lifestyle and, perhaps what I took for granted the most, good health. The word ‘Slainte’ is the Irish for health and it is used a lot. Growing up there were many a setback that were greeted with the phrase, "chomh fada agus a bhfuil do sláinte agat". This translates from Gaelic to English as "as long as you have your health".
So whilst we worried about these same setbacks, whether it be a lost match, failed exam or lost girlfriend, they were all treated similarly by our parents and dismissed. They understood the importance of health and that everything else fades into insignificance, whilst we took our health for granted. But as Joni Mitchell sung "you don't know what you've got till it's gone".
Since my diagnosis with Parkinson’s Disease (PD), some short four years ago, I have focused on three key areas that have really helped me in dealing with my condition. These are the following:
Keep a positive attitude;
Exercise every day; and
Find yourself a good doctor who can give you the time you need.
Attitude
When you look up Parkinson's on the internet, as you invariably do once diagnosed, you are greeted with intimidating adjectives such as ‘incurable’ and ‘progressive’, and it's those kinds of words that stick with you.
But when you get over the initial shock and take some time to think about it, there are far worse words you could have read. It is also worth remembering that yes, the disease is incurable now, but who can say what might happen in the future? We should also remind ourselves that progression is a function of time and Parkinson's disease is different for everyone.
How many good years will I get out of it? Who knows? And while I read a lot about the disease, I also read about the treatments, the research, the drug trials, the patient trails, the physiotherapy, the benefits of exercise and all the other options to help deal with the symptoms. Even more useful in helping deal with the disease, is talking to others about it, whether it’s through meetings, seminars, or webinars to help engage with the information on another platform and for maintaining social interaction. Learning more about this has been a real buzz and has given me a lot of hope for the future and focus on my treatment. I consider it early days, and I have no intention of reading the last chapters of the story yet.
Exercise
At best I could be described as a hoarder and a procrastinator. So, when the opportunity came to take retirement a few years early, I was not short of half started projects, embryos of adventures, unfinished tasks, half-baked ideas, hundreds of books begging to be read as well as a bottomless well of TV series and movies to watch. It seemed that it was all going to work out really well. However, it became clear to me that my energy levels were not what they used to be and that the more I sat back and relaxed, the stiffer I became.
The first medical advice I received was preaching the benefits of exercise. Luckily, I have always led a fairly active life and have enjoyed exercise and sport, so I began an active regime of exercise from the beginning. The TV series have had to wait, so I still don't know what happened in LOST.
Now I would say that exercise does dictate my life and if I don't get some daily ’fix’, I feel the effects. At 61 it's not always easy to push yourself to get after it every day, however, I have great support from my wife and family.
The main source of my exercise has been running. I had started running about 7 years ago, a few years before my diagnosis, so I had run a few half marathons and was enjoying this form of exercise. However, since then, I have channelled my running into the training for and the then completion of two London Marathons. I have also since climbed an active volcano and camped for 3 nights on the rim. I am now training for my third London Marathon in April. One of the reasons I ran again was because it was such great craic the first year. The support you get from the crowds of complete strangers is amazing and in a world where interpersonal communication appears to be dying this anonymous interaction is so uplifting. Anytime you felt you needed a "pick up" all you had to do was to make eye contact with the crowd and they reacted with immediate response regardless of age, gender, race, religion or disease. "Come on Joe you can do it" with their fist clenched, or "Go Joe". As much as you felt you needed to respond with a "thank you" there were never anything expected. It was all free encouragement. One of my fellow ‘Parkies’ John did the course over two day inspired by his 8 year old daughter and they was a crowd at the end to help him over the line. Becoming the largest fundraiser for Parkinson's UK in 2016 was also very satisfying, not only because it was a cause so close to my heart and I know the money will really help, but also seeing friends and family take an interest and support me in the journey meant the world.
Parkinson’s can be a cruel disease, as the reduced dopamine lessens your motivation and inhibits your ability to do the exercise that you so badly need. So having a goal is so important. The Marathon date is fixed for me and the more sponsorship I receive the more committed I am. Or when I sign up for golf, I know I have to go as I do not want to let down the group.
Not all my exercise is so energetic, although I do benefit from short periods of high intensity. I also ‘play’ Tai Chi which I’m terrible at, but it gets me out and stretching early at the start of the week and as the ‘master’ says “don’t worry just keep moving”. The dogs also demand walking and other smaller bites of exercise include walking to the shop, doing the garden and keeping social.
Medical Communication
I’ve seen and read several cases where patients have said the most important medical professional for PD is a Parkinson’s nurse and I can understand that. I guess it depends at what stage of the disease you are at. Physiotherapy is so important for me and I can see it becoming more so in the future as I progress. However, having a Neurologist who knows the disease, (and I would imagine that few would consider themselves absolute experts in the field, as PD varies so much from person to person) is so important. I consider myself lucky in finding one that I have a great rapport with and with whom I am completely open, so much so that he has to caution me sometimes and tell me “now you can’t blame Parkinson’s for everything”. I realise there is a massive shortage of similar people and many patients go misdiagnosed or inadequately treated, however I’ve also seen many great student doctors at study groups as volunteers or at conferences, enough to hope that help is on the way.
Being diagnosed with any disease is a shock to anybody and it can be hard to adjust to life’s new parameters, however it’s how we react that defines the quality of life we will have. So for me it’s taking each day and making the best of it and I’ve never been busier. Here’s to many more of them.
Slainte.
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Joe Lacy is a Blogger Partner for the 5th World Parkinson Congress. Joe lives in Malaysia and shares amusing moments from his life on his blog A Long Way From Tipperary. Joe is running in the London Marathon this year! Visit his fundraising page.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not reflect the opinions or positions of the World Parkinson Coalition®