Gary: my daily routine living with . . . Parkinson’s Disease

‘When I was diagnosed at age 44, I was devastated . . . I cried my eyes out’

 

The shaking doesn’t wake me up.

In fact, that moment just before you realise you’re actually awake is the best moment of the day – sometimes. It’s that brief moment when you think: ‘I’m free! I’m better! I’m cured!’

But no. No sooner do you think that when BLAM! You are awake. Your eyes open. You are aware. And then it starts.

Gary Boyle.
Gary Boyle.

Shake . . . outta bed.

Shuffle . . . get those flip flops.

Slow motion walk . . . ah yes, it can only be another day with feckin Parkinson’s Disease.

So first, the depressing part: incurable, deteriorating, don’t know what causes it, fecked if we know how to stop it, best drug is 50 years old. Deep sigh.

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However, there is a less bad part. It’s not contagious, you can continue to do stuff, and you meet the most inspiring people.

When I was diagnosed at age 44, I was devastated. Completely out of the blue, PD entered my life and, though I wouldn’t accept it then, I know now that it’s here to stay. I cried my eyes out on September 2nd, 2009. I couldn’t comprehend how I could end up with an “old man’s disease”. I ignored it for five years, but as with all of us with this ‘shaking palsy’, it became evident that I had to do something about it because, well, it was becoming evident.

I was shaking all the time. I was walking like a zombie. My clothes didn’t fit me as I’d lost weight.

Joan, my saviour, my love, my wife, was gently telling me to speak up as my voice was beginning to fade. She knew. She’s a Speech and Language Therapist. They know that PD hits your voice first as it begins to deteriorate your life away.

That was my wake up call, just what I needed. I began to take steps, literally, to get my life back, and over the past few years I’ve developed a daily routine that I follow.

So now a typical day starts with medication, stretching and press-ups. Then breakfast.

- Monday is gym day.
- Tuesday is a 6km run with Patrick, my brother.
- Wednesday is Irish Set Dancing (great craic) with Pat O’Dea.
- Thursday is Pilates with Emma.
- Friday is dancing (oh yes) with Loretta and Robert.
- Saturday is an extra long walk.
- Sunday morning, another run with Patrick.

The result?

I’m actually in the best shape I’ve ever been in my life. Eh, if you ignore my incurable deteriorating neurological condition, of course.

I want everyone with Parkinson’s to do this routine, it has made such a wonderful difference. I intensely dislike having PD, but you know what, I see it as a life sentence now and not a death sentence.

And you never know, there could be a cure someday soon.

I want to be fit and ready for that, and beat this feck’n PD once and for all.

- If you would like to tell your story for this series, you can do so here, or by emailing health@irishtimes.com.(please write "Daily Routine" in the subject line).
Thank you,
Damian Cullen (Health & Family Editor)

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