Life Expectancy With PD – Redoubling my efforts

From shocked to relative calm and back to the fight…my journey after hearing a podcast on Life expectancy with PD

My blogging on Parkinson’s has to date been both self therapy and my desire to help raise awareness and also to promote a positive can-do attitude towards the disease but one that presents a true narrative of my journey.

This post is not an easy one and a big topic but it is one that has been very publically spoken recently during Parkinson’s awareness month about and one on which I have invested much thought. From a self therapy basis I am using this as a strong reminder to myself to redouble my efforts in this marathon called PD.

The Podcast & Study

Tuning into the latest episode of ‘2 Parkies in a Pod’ called ‘Will I die from Parkinson’s’ I was left with a heavy rollercoaster of feelings which my family saw but which I think I have come out of intact and still positive.

A well known study was presented by its author – Professor Bas Bloem, one of the world’s leading Parkinson’s experts which you access here. To many it is quite shocking and it is the second time I have seen it and it still packed a punch.

Many of us are told that although PD is horrible it doesn’t necessarily shorten your lifespan. This study clearly shows it not the case and that the younger you are diagnosed the bigger the impact so that ‘on average’ a regular non PD person at 55 years old will on average live 25 years (male) and 28 years (female). Those with PD diagnosed at 55 will on average live much less 14 (male) and 22 (female) respectively, a difference of 11 years for men and 6 for women. (The report linked above shows a clear table by age group)

So Parkinson’s is not only a horrible condition but it kills…

My reaction / redoubling of efforts

What good can it possibly do me and others to know this and how am I (and my loved ones) meant to process this piece of information? The following are my thoughts…

– Averages – are just that – you know the saying “Lies, Damned Lies and statistics”. As a CPA I get this. Using a simple example – If five people live for 5, 6, 15, 24 and 25 years the average is 15. This is completely unhelpful……my guess is that apart from unusual anomalies, those who are positive, work hard, exercise and do all the right things will hopefully beat the statistics (both in PD and non-PD) and visa versa.

– Faith – Knowing the average doesn’t need to alter my direction, if anything it makes me double down. I have – as a person to faith – to believe I am judged on my merits not by an average.

– Focus – I believe this will focus me on the challenge ahead and help crystallize that I am in the fights of all fights and I have to give it everything. As I say in the title – Redoubling my efforts.

– Science – As research like this rightly raises the alarm bells it will raise funding for technological and medical breakthroughs. The more the world understands the damage PD inflicts (and the evidence of earlier Life expectancy with PD) the more it will be able to raise its profile and fundraise. As they said on the podcast – PD messaging needs to get tougher and more vocal with less of the ‘nice guy’ disease….”it is manageable etc”.

As the report states: “knowledge about the reduced survival with PD has implications for messaging and advocacy. Public advocacy and education must not soft sell the impact of PD, but should provide honest messaging about the survival with PD. Acknowledging the reduced survival of PD will create a greater sense of urgency for future research”

Selfishly this report on Life expectancy with PD it also shows the importance of addressing the challenges particular to Young Onset Parkinson’s Disease.

– Reality Check – In all things acceptance is more preferable to denial so a part of me would rather accept this risk and not stay in denial and orient my game plan around it.

So what is my gameplan?

The last months have continued to show me a little more each month the advance of PD – my right arm and leg continue to weaken (I had to do ten-pin bowling with my left hand for the first time the other day but I got one strike!) and I sustained a big fall after freezing which I very luckily escaped with bruising only. Family, friends and work continue to be fantastic in their support of me (and I continue to work very hard).

Thankfully, day to day I am doing ok mentally and physically and therefore to my gameplan…

Continue to exert all energy to fight PD on a daily basis with all I can…medication, attitude (which I need to keep constant watch on and battle to stay positive), exercise (running, walking and gym work with a trainer), yoga, physio, accupunture, osteopath, table tennis (which I am trying to increase), faith/prayer, work to keep my brain engaged, diet and trying to find time to relax 🙂

I am in it for the long haul!!

Bottom line

Whilst I am not 100% sure of the science as there are other studies, if this is the case which I suspect it is, I am upset about the reality of lower Life expectancy with PD and not the podcast or reporting of it. After a brief wobble I plan to use this to spur me on in my fight to beat it.

Each of us will have their own reaction to this study on Life expectancy with PD and that is up to you. These are just my thoughts.

I also want to make a shout out to a charity called Spotlight YOPD – who are making real efforts in the space for YOPD and who have generated some very useful content which is worth a read.