Parkinson's Never Sleeps - Ann Keilthy

It is with me every waking moment, every hour of every day. 24/7

Every breath I take, every move I make it is watching me - could almost be the Sting song, couldn't it? "EVERY BREATH YOU TAKE, EVERY MOVE YOU MAKE I'LL BE WATCHING YOU"...

Towards Diagnosis

I was 44 and, as Muhammad Ali lit the 1996 Olympic flame, I watched the television idly.

My left hand had been shaking occasionally, my arm did not swing when I walked, and I tripped with the left foot, throwing it forward rather than walking confidently on it. The piano was getting difficult to play; the more I practised with my left hand, the worse it got. This mystified me as it was the height of summer. If it were winter it could be because of cold or frozen hands.

Suddenly I saw the great boxer heading in carrying the Olympic flame. I had always admired him and enjoyed watching him on the TV - "float like a butterfly, sting like a bee" - he was a joy to watch, but not this time. This time I saw the same shake in the arm that I had. Even now I can see the room where I was sitting. The sun had moved around the other side of the house and suddenly it seemed very cold. Then the commentator said, "Of course, he has Parkinson's disease". That’s all, just those few words. I had heard about Parkinson’s, but to me they were words as I knew nothing about it at all. But even with my lack of knowledge, I could see the change in the great man. A cold feeling settled in the pit of my stomach. I said nothing to anyone.

There are not enough words to describe the twists and turns my life has taken since Parkinson's entered it fifteen years ago. It seems like I have lived with it for my whole life; at every waking moment it is with me.

I consciously chose to banish it, but confided in my younger sister about a month later and she told me I was foolish not to get it at least ruled out. So I went to my GP who said it wasn’t Parkinson’s. I was referred to a general consultant who said it could not be ruled out and from there to a neurologist who diagnosed Parkinson’s.

My neurologist said, when I described all the things that I liked to do, that I should be termed "a woman of accomplishment". That threw me - that I should hear such an old fashioned term being just the perfect description. Playing the piano, sewing, embroidery, painting, drawing, computers, graphic design, website design, a degree in English and an eclectic taste in reading material and gardening; the list just went on and on.<

You know, that was when my life changed. When you have Parkinson’s you have it twenty four seven x 365. Every second of the day it is with you.

I was started on Sinemet (why, I do not know, and I spent nine miserable months trying to tolerate it); two Protium 40mg tablets a day, three for a few weeks, three Motilium with each Sinemet, then Antepsin and Gaviscon in between. I spent much of my time being able to walk properly with no tremor, but green-faced with nausea! In my family we do not get sick, we just suffer. During those nine months I don’t know what I would have done without the support of Liam, my life partner. We bought every book we could find about Parkinson’s and my brother, a consultant in Northern Ireland, sent me his medical dictionary.

A few months later there was a knock on the front door and I opened it to see a UPS delivery man with some large boxes - my brother in Cork had sent me his old PC. I opened it, put it together, started it up, clicked on Start, then Help and when it opened, started at A and worked my way through every help file on the computer. And so my fight against Parkinson's began.

Early Years then DBS in 2003

That was then and this is now, and a lot of tears later, and more water under the bridge. The years passed, and that I survived with my sanity intact was down to David Magennis and PALS. More than that, he became my friend, and I helped him and Sean Doody build PALS from an informal set of people into a group with an identity, although to this day it was his quiet personality that endeared him to the members, and more than just me have reason to be grateful. I remember dinner at my house with Marie, David's wife, and Liam poking fun at David and me (and no, not David and I but David and me - am I giving away my teaching background? Just a little!)

In 2002 I asked about DBS (Deep Brain Stimulation), was told no and then yes, and to make a long story short I went to Bristol in March 2003 on a journey of hope, certain this was right for me, and even the stumbling blocks served up by what I can only imagine as a God standing behind the door out of sight and giggling, did not deter me. (First flight to Bristol cancelled; the next one diverted to Birmingham, and the driver of the bus back to Bristol saying we were not welcome on the bus - wrong airline - but since we had pulled away from the kerb we were not thrown off. To make a long story short we got there with 10 minutes to spare, had the assessment, had the op, everything went well, and I renewed acquaintance with Prof Gill whom I had met when he had come to Dublin to talk to PALS in December 2001. A gentle quiet spoken good man whom I trusted 100%.

It took quite a while - a few years - to get a setting that really suited me, and on one occasion forty settings were tried in one day! The programming of the neurostimulator/pulse generator/implantable device is the most problematic part of the whole thing. There are two wires with electrodes at their tip that are placed carefully into one particular part of the brain, run down under the skin behind one ear to the pacemaker-like neurostimulator, hooked up and when the pacemaker is switched on and programmed - both sides separately - to good effect then you witness what is almost a miracle. However we are all different and the result varies from great to not as great as hoped for. In my case they told me I was one of their best results.

On a good day I walk normally...

All it takes is a tiny bit of stress though. Without the DBS I cannot walk at all. This year I am Chair of PALS, even though I am 59. People forget I was diagnosed at 44 and am therefore early onset. I have PD now 15 years, and because I still do not take Sinemet or Madopar or any levodopa I have no 'ons' or 'offs' or dyskinesia, side effects which for most people with more advanced Parkinson's, measure their day. If you ask me to talk about DBS I will until told to shut up! Meanwhile I am on the board of PAI, EPDA, NAI, and PCL - PCL? Liam's business! You could say now Parkinson's is there 23/7!

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