This is life with Parkinson's Disease

An unusual experience occurred for me yesterday. I went to get my Flu jab, something, I admit, to being ambivalent about. I went to my GP (Doctor) in the afternoon as scheduled. As it turned out the timing was a bit off and I ended up arriving in his rooms in a state of 'Off'. I had just taken my afternoon medication and just when I wanted it to work quickly, well let's just say I was shaking like a leaf when I got there. Bloody marvellous. But what was unusual were the comments from my GP - I explained that I was 'Off', hence the reason for the shaking...and the extremely slow walking into his rooms...and the even slower and more complicated removal of my jacket. He commented 'I've never seen this before, Gary...I mean, I didn't know you shook like that'. I was about to say 'are you flipping kidding me?' when I realised, yeah, he's probably right; he hasn't seem me like this before. I was taken aback by his comments as my feeling would be that this is what he already knew about me. The fact that he hadn't seen me presenting like this is something that caught us both by surprise.

Thinking about it, there are many, many people who haven't seen me like this before. Why should I be surprised? I usually experience the worst of my lovely PD symptoms in the early morning or late evening. The fact that I'm able to write this post at 11pm is a bit strange, but I've had a very strange kind of day. I won't bore you with any of today's carry on right now; don't worry! What I will briefly say is that I'm really quite lucky - my daily exercising, medication, sleep, watching what I eat; smiling :-) and interaction with people keeps me moving and gives me a lot of control. But every day I experience 'Off' periods, as do so many of my fellow travellers. When this 'Off' happens in public it is disquieting, unnerving and really, really stressful. But it happens and it's there to remind that this bloody deteriorating condition is with me whether I like it or not (guess what? I don't like it! Who knew?!).

I have experienced 'Off' that was actually a blessing when it happened. I was asked by Dr. Mark Murphy to share my PD experiences with his First Year Medical Students in the Royal College of Surgeons in Dublin recently. Before I was introduced I could feel that, yep, here comes nothing, I'm shaking like a leaf. I went ahead and told my story, with the first 20 minutes completely off the Richter scale in terms of me shaking all over. The Students in the room were so respectful...or maybe they were just terrified that my head was about to spin off somewhere in the Lecture Theatre! I am so grateful to them and Mark for allowing me to carry on. It was a tremendous experience, one that I've learned so much from.

Parkinson's Disease isn't a killer (yeah, right), but it get's it's ugly into every part of your life. We can definitely slow it right down through a regular, multi-disciplinary approach, combining medication, help with sleep, proper diet and timing of meals, exercise - lots and lots of exercise each and every day, and social contact. Nearly all of this multi-disciplinary approach is about coaching and learning and actually requires relatively little funding. What it really does require is that the Person with Parkinson's be the centre of attention; this person is after all, and unfortunately, the Expert.

So have a look out for us! If you see someone very gingerly packing their groceries at the check-out desk, it may be that the person has PD or some other Brain condition. It may not be just that they are trying to keep the 4kg bag of potatoes from crushing the croissants! Each one of us is doing what we can to avoid stress (eh, everyone should do that!). For some it's easier than others. For all of us with our PD Brains, we're taking on every day as a challenge - but it's a wonderful challenge; one we are delighted to undertake, as we know every day presents us with the opportunity to slow this damn thing down. And every time we do that...guess what? We go a little faster! Isn't life great?!