When writing this I wanted to show that even though I thought it (Parkinson’s diagnosis) was the end for me, it doesn’t have to be. I am still here , 11 years later dealing with the many twists and turns. Meeting some amazing people and doing creative things that I would never have done before. They are not going to change the world but have changed mine.
I can’t remember the precise date of diagnosis just that it was in February, 2009. I had booked a day’s holiday from work as I didn’t want to be rushing and messing about as it takes me ages to get ready. especially with my hair. I knew I was going to be assessed for Parkinson’s, having finally shook enough to convince my GP to refer me even though my wife had suggested Parkinson’s a year earlier when the tremor was very slight and she’s never wrong as she likes to remind me. I think women have a sixth sense for these types of things.
I can only remember from being in the hospital lift and seeing myself in the mirror of the lift and thinking, I like this coat but the hood is a bit “I’m trying to be young again and maybe a Gangsta, allriiiiitttee”.
My wife and mother-in-law were both with me. Both my parents had passed, though if still here I know my Mum would have been there. But my Dad, being a traditionalist, would have uttered those immortal words that I admit have escaped my lips, “You know I hate waiting in those places. Call me when you’re ready and I’ll come pick you up, so you don’t have to worry about finding somewhere to park. Be outside the main doors as you know I can’t use this blasted text thingy you kids use these days.”
We three shared a feeling of how much bad news is this going to be. We were quiet in the short journey apart from Christine (MIL), “I wish I’d brought a flask cup. We can call into the Lemon Tree for a tea after this”. Me and Suze both nodded agreements.
The lift stopped and the doors opened and the bright light of the waiting room shone before us and we entered at a slightly slower speed making our way to the reception desk. My appointment letter was clutched in my hand quite tightly I seem to remember. I handed the letter to one of the receptionists and said, “Good afternoon, I have an appointment with Dr. H_____ at 12.45”.
I felt like I was in one of those Medieval films where the messenger doesn’t realize he’s also delivering instructions on what’s going to happen to him, and it is very rarely something nice. The receptionist took the letter and read it and then asked me some questions for details and then asked me to take a seat in the corridor over there and both my wife and mother-in-law both pointed to the corridor over there saying, “That corridor?”, and the receptionist concurred yes that corridor as if they had some telepathic understanding that I might perhaps take a seat in another corridor and then going home as no one had called me and not finding out, well not just yet, that me and the greatest boxer ever had something in common, apart from us both being men and human. (Yes, I have been medically proven to be both.)
We all headed to the corridor and took a seat outside a few doors and did the thing that we British love and that is to wait. It adds that bit to any story being related about appointments, “Everything was great. The staff were so wonderful, but it just took ages waiting to get in”. So began the countdown to my special news day which I have affectionately named PD day, not very original but is exactly what it says on the tin.
I had taken a seat which was a bit isolated from the other chairs. I’m not sure if I was making a subconscious statement about how I was going to deal with this. You try not to but, as I have found since, you keep things you can to yourself and just grin & bear it, as you don’t want those closest to you worrying all the time.
Suze and Christine were both talking quietly trying to act like it was about nothing in particular but giving the game away with furtive glances my way. I smiled inside and cast my gaze around the corridor. As corridors go, it seemed OK – functioning well as a corridor should. Directly in front there was a dry wipe board with the names of four doctors and above them was written the word Neuro. I wondered which doctor I was going to get since the doctor on my letter was not on the list. Then my mind took the track of thought of choosing your doctor in a game show style, similar to Going for Gold or BlockBusters. I opted for BlockBusters as I enjoyed where they ask, “Can I have a P please Bob?” but in my version I would reply, “No, you’ll have to wait till we’ve finished like everyone else”.
My mind went to one of its strange places as I started to mentally play BlockBusters. I was deep in thought very quickly, really in shallow thought, when I was disturbed by hearing my name being called. I was actually quite relieved as my stress levels were up as the doctor in the single team was actually beating the team of two doctors I had imagined winning… and doing it quite easily… and was only two letters away from the Gold Run! I decided if I went back to finishing my imaginary game, I would have to ask the single team doctor tougher imagined questions or get two better imagined doctors for the double team… if it was allowed in the rules obviously.
I looked around and my wife rose, who is called Suze not Rose, rose (Suze not Rose) to follow me. We headed in the consultation room and both took a seat by the Neurologist’s desk and waited for the unknown to become known.
I extended my hand to shake his, then he gave a brief introduction and explanation of what was going to happen and then he began to ask me questions. During the introductions I couldn’t help noticing there wasn’t a lot of High-Tech equipment or any equipment at all to diagnose a condition of the brain. I was expecting to be tested like Bruce Banner does in the Incredible Hulk. Perhaps the in-depth testing would be done in another room after he had got all the personal info he needed.
He started to ask questions about lifestyle, family history and other things I can’t recall. After his questions he asked me to stand and walk from where I was to the opposite corner and back again both quickly and normal. He asked me to lay on the trolley bed while asking me to perform various hand and arm movements and moving them himself while distracting me with other tasks.
He then asked me to remove my shoes. A wave of panic washed over me as I thought, “Did my socks match?”. Thankfully I had a matching pair of socks on so I wasn’t worried about him telling the whole hospital he had a patient with odd socks on. They may have had Marvel characters on them, but they matched. My elation vanished though when I removed my shoes. The toes of the socks were a slightly darker shade of black from sweating. The doctor turned to put some gloves on and even though I was there to find out if I had an Incurable Chronic Progressive Neurological Degenerative Brain condition all I could worry about was my socks were a little sweaty and he was going to start touching them.
He did his checks and after 10 minutes in total, he was ready to give me his diagnosis, As I was contemplating apologizing about my socks, I was also still trying to get my head around the fact that I had not been in a million pound machine with electrodes attached to my head. Diagnosis involves a process of deduction by the Doctor. It was like taking a car to a garage and the mechanic kicking the wheel, pushing a few things, then shaking his head and saying the engine is on its way out.
” Well, Mr. G____, I’m afraid to say that my diagnosis is that you have Parkinson’s Disease (or just Parkinson’s for the pedantic, I can’t remember). My wife refrained from jumping up for a high 5, shouting “Told you!”. Instead we both just sat there staring into a bit of space in front of us really. Now I had heard about Parkinson’s but just assumed it was an older person’s condition as per the clips you see when you start to investigate this condition.
I had seen a few of them which was enough. I remembered Muhammad Ali, who must have got it through boxing, holding the torch at the 1992 Olympic Games. I had only just turned 40. How could I have it? I wasn’t feeling anything I recall but as I turned to the doctor to say something like, “Are you sure?”, I noticed he had a look on this face. He had been through this many times and was waiting for the news to sink in.
It then started to and I could feel my body tense so hard as a wave of emotion enveloped me. I tried to ask a question but couldn’t as I was filling up. I turned to my wife to say something, but the words just stayed unspoken as my thoughts were, “I’m 40 and going to waste and die!”. I hugged my wife, making how I felt worse as it was like accepting it. I turned to the doctor who said to take a moment. I took a deep breath and in a broken voice said, “No, it was o.k.”
He started explaining stuff about the condition and saying that he didn’t want me to start medication yet as I was in an early stage. After a few minutes he was finished and as I stood, I thanked the doctor who said he would see me in six months.
My wife hugged me but we both stayed quiet for the moment. She steered me out of the room and closed the door as I was still in a stunned daze trying to digest the news. All I could process was what I had read and seen about the condition – now trying to prepare myself for the remaining few years I mistakenly thought I had left. I noticed my wife looked over to my M.I.L who sagged slightly.
We headed to the reception desk with me in a “there but not there” mode and just responded to prompts. I remember sitting down with what must have been a very dazed and shocked look on my face. I could see people were looking at me with that “Poor fella’s had some bad news” look. After about a minute of this the receptionist went to a door, knocked and a nurse appeared. She started talking to the nurse and they both looked over at me. The nurse nodded and went back into the room and the receptionist returned to her desk, looked at me and smiled a sympathetic smile which I returned.
The door the nurse went into opened and she looked my way and shouted my name out. This was the start of my daze wearing off as the waiting room was quite busy and the looks of poor fella were turning into looks of “He’s only just got here why’s he going in straight away?” There is only so much tolerance people waiting have and if you don’t have a very visible injury like an ax embedded in you, it runs out quite quickly as you find out more as time goes on with this condition.
I made my way through the annoyed looks and headed into the room where two nurses were waiting for me and one said, “Take a seat John, we’re just going to take some blood samples and you can be on your way”. Going through the process of taking blood seemed to bring me fully round with me making general small talk and joking with the nurses.
She asked me to take my coat off so she could find a vein to take blood from. She had no difficulty as they were very prominent which I put down to the tensing when getting my diagnosis from the Neurologist. As a nurse got the needle ready to put in my vein I asked if she was going to put me to sleep while she took the blood. She said, “No, you’ll have to be a brave soldier and it won’t hurt that much.” I then asked if I got a lollipop if I didn’t cry and again, she said no as they were for the kids in the children’s ward. I sighed saying, “It’s not fair”, but didn’t cry… but was closer to it than when I was getting the diagnosis.
When all was done, they wished me well and said goodbye. I headed once more into the waiting room and back into the still, live stare minefield. I thanked the receptionist as I passed and went to my wife and mother in law who both rose and we headed to the lift and to a much-needed cup of tea all around at the market café, “The Lemon Tree”.
The talk was very light as we would discuss the future in more comfortable surroundings, but a problem still weighed heavily on my mind which Suze and Christine both noticed. Suze said, “We’ll work through this together.” I said nothing, just half smiled and nodded.
How could I tell them that I was worried about how I could imaginary single team doctor in my imaginary game of BlockBusters from getting to the Gold Run?