The 11th April is World Parkinson’s Day – an opportunity to raise awareness on every level to the disease that impacts so many (patients and loved ones) and its treatment and efforts to fight it. Part of my effort is to tell my story as it is as I think awareness is not just medical journals but people coping with the realities of PD.
As an almost 4 year Young Onset PD patient, the simple reality is that every day is a Parkinson’s Day. It is a disease that doesn’t go away or hide for periods of time. Sure it has its peaks and troughs but it is there every day and if I take my eye off the ball for a few hours by not taking the medication, not doing my exercise, not being careful when eating or getting too stressed it roars back to remind me.
For example, this morning it is lack of sleep and stiffness in my arm that are my main symptoms – having woken up wide awake at 0:44am (yes – 44 mins after midnight having fallen asleep according to my Garmin at 21:00) and finding it tough to type this article. However my balance – often my Achilles heel which is why I walk with a cane, seems good and cognitively I am fine (if a little grumpy). Yesterday was a good day and I ran 5k in the morning – today I walked 3k briskly.
So how do I get through it….there are all the elements of the my fight which I set out in the Asserts2 model I wrote about such as exercise, medication etc etc but I will focus on the main one for me – that of Attitude.
Churchill was quoted as saying “Attitude is a little thing that makes a big difference“
In my personal view, he was right and according to a survey’s including one by parkinsonsdisease.net which found that about “75 percent of survey respondents with Parkinson’s disease said their attitude is a significant factor in their quality of life. Many respondents said having a positive attitude helps them” – “[A] positive attitude creates positive results. The more positive you are, the more you can do, which makes you believe you can accomplish more.”
For better or worse and for whatever reason, PD is something I have…there is no use fighting the reality. As a person of faith I believe it is my challenge for a reason and the ship has sailed in that department. The question left to me is how to deal with it. I try to focus (not always successfully) on four elements:
A daily battle but a pragmatic one – I have chosen to fight it with all the tools I can gather – emotional, physical, medical etc and that is why I have changed so many elements of my life – exercise, diet, physio, accupunture, yoga, therapy you name it. I want to stay as healthy as I can for as long as I can but I am not in denial. I accept that it is gradually going to advance and am trying to develop an attitude which accepts this and is prepared to change the fight as it advances. One example is the cane….I simply hate walking around with it and the attention it brings but the alternative without it is that my issues with balance (which can appear randomly) end up in bad falls. It is simply a pragmatic move to accept and move on and use it and it has helped me on many occassions. It may be that I can stop using it at some point but for now it is what it is.
Marathon not a sprint – PD is a long term life-long disease and stamina is key. It needs in my personal opinion steady pace to deal with it. Like eating – a short term extreme diet rarely sticks in the long term – it is much better to put in place a long term healthy diet which is not too extreme and unmanageable but which you can stick to for the long term. The same is true with exercise – mad mad extreme sports probably won’t help for the long term and may actually hinder by causing injury but steady exercise such as yoga and daily walking/running/swimming may yield better value.
Humor – Each person has a different attitude with humor and it is not for all but I have to reflect on the importance personally in seeing the funny – albeit tragic side of life. Whether it is falling over and landing on a bucket (which fared worse than me), screaming when startled or phoning someone when asleep by saying Siri and their name – you either laugh or you cry and although I do both I try to see the funny side.
Part of my life, not my life – Whilst I have made so many adjustments I try to recognize that PD is just a part of who I am and not me. I still have an awesome family, have a job, and want to enjoy life and be a giving productive person. For sure it has a huge impact on all of the above but my aim (and most of the time the reality) is that I still enjoy a high degree of normalcy. This last week and a half I have been travelling for work. I can’t pretend it is as easy as it used to be but it is still relatively normal. PD will continue and will need ongoing adjustment but for me I will try to keep this attitude.
All of this comes with the right support without which – especially from my family and friends – I would be bereft.
Everyone has to chose their own program and PD is so so varied but attitude in my view is key and can help. I hope this is at least of some benefit to someone and welcome feedback.
One Response