A few thoughts on living with Parkinson’s Disease

My perspective on living with Young Onset Parkinson’s:

At first (diagnosis) you know very little.

Then you can’t help but have a peak (online) and then the reality of the longevity of it (PD) really hits you.

For a while, it was really tough and as the symptoms gradually progressed (over 4 years following diagnosis) I wasn’t really prepared (and new symptoms). Who would be?

Eventuality, you find your feet agan, but it’s on new ground which is seemingly very unsteady and not at all the path you thought you would go down before you knew you had Parkinson’s.

You will naturally find ways to adapt and work around it, as best you possibly can.

You carry on – it’s a lifelong chronic disease -so it opens up your perspective on what’s ahead, in a way. You are forced to consider, and reconsider, what you had set out to do in life. Looking ahead, you ultimately realise that with time you will be limited well before you reach your senior years – in terms of mobility and what you can realistically achieve day to day.

I have little control over what happens to me in my life – but how I react is key and it is this response which will have the biggest impact and not, as in this case, Parkinson’s.
Everyone in life has a struggle or problem to contend with. This is simply mine.

The reasons for sharing my life with Parkinson’s online was so that I would hopefully do my bit towards dispelling the stigma around Parkinson’s. It was also to highlight the fact that Parkinson’s affects younger people too, not just older people, and that how (statistically) out of every 20 diagnosed with Parkinson’s – only 1 in 20 (possibly even less) are under the age of 40.

I am here to share, inform and raise awareness of what Parkinson’s is but also how it impacts daily life . This is so that others diagnosed, now or in the future, will have the information there to see and hopefully feel like they are not alone in this lifelong battle of body and mind.

Renewed energy

So I am a young ‘parkie’, diagnosed at the age of 29. I am now 33 and, like most things in life, wish I knew then what I know now. As you have already read at the top of this page, I am a rarity.
Over the past few years I have experienced what it feels like to be such a rarity and the obstacles it has presented to me most days.
Before I continue, I can promise you that I am not going to talk about how I climbed a mountain for charity or ran a marathon for a certain Parkinson’s charity. Don’t be offended by this if you happen to have done this.. good for you! It’s just not me, thats all.
I live in Greater Manchester, work in a local College, have a wife and two young children. My time is taken up with family and work, a love of music, technology and a passion for F1.
When I was diagnosed I knew very little about Parkinson’s Disease and was given a brief (if not blurry at the time) explanation of what it actually was whilst sat in just my underwear, having spent a week in Salford Royal Hospital after six months of sporadic appointments and tests previous to my stay on the Neurology ward where I shared a room with four much older gentlemen all with ‘age related’ illnesses (as I saw it with my ignorant view at the time). Shortly after I was issued a prescription for L-Dopa and told to attend an appointment with a Neurologist some weeks later.
After sitting at my laptop with the Parkinson’s UK website in front of me, listing Levodopa as the gold standard treatment, I knew my life at this point was at a point of change with no direction home to what I had known before. Anyway, you know the rest.. I opened the container and swallowed the white and blue capsule. I won’t be talking within this post about the PD drugs I have tried and what professionals have helped me along the way etc, I will discuss this another day (but feel free to contact me and fire away!)
This, my online space or point of reference, is to support existing ‘YPWP’ or to provide useful and tailored information for the young folk yet to be diagnosed. For example; should I tell my employer? What about my insurance or driving licence? Can I travel abroad just as easily? What if I am planning a family? How do I explain it to my family so that they understand and not pity me? The list is a long one..
This is why I have put myself here and called it One in Twenty. Such a small number can get lost (forgotten even) amongst the the majority – after all its not like I even look ‘ill’. For instance, if I parked in the disabled space outside your local Supermarket with my wife and kids in tow what would you assume? What does a ‘young onset parkinson’s’ person actually look like anyway? And no.. I don’t look like a movie star with great hair and cool sneakers nor do I drive a Delorean (I wish I did!). The truth is I look like most early 30-someting men.
Don’t get me wrong here, I know that you can be disabled without the need for a wheelchair or cane – after all we are all swans with a calm exterior but kicking away like crazy under the surface. We all have our struggles, I know.
If you are still reading this then I am flattered. If you are reading this using the wrong hand as you scroll down with the mouse (because the hand you used to use is more wooden or shaky these days) why not get in touch.
Make contact. Like I said: we may be small in number but we can easily be united as one and help each other out.