I wrote this piece on June 28th 2017; the day after I was diagnosed with Young Onset Parkinson’s Disease.
Today is the first day of the rest of my life. I feel clear for the first time in years. It’s been 15-20 years of going to numerous Doctors over that time and being sent from hospital to hospital, specialist to specialist and subjected to an endless and repetitive stream of blood tests, physical examinations, physiotherapy, questions, constant monitoring and the intense frustration of never getting far enough.
A Snapshot of History.
I had been diagnosed with Fibromyalgia, a few years ago. At that time, I was also told by both the Neurologist and Rheumatologist “…but Fibromyalgia may only be interim, for it may signal that something else is developing. Fibromyalgia doesn’t describe all of your symptoms and so we must continue to monitor…”.
Of the many possible degenerative neurological diseases, I had whittled the most likely candidates down to either Multiple Sclerosis (MS) or Parkinson’s. I often veered between the two. Then, in around 2009/10 I started to experience occasional ‘twitching’ in my right hand; just my index finger and thumb, pressing together sometimes and my arm sometimes jerking in some sort of spasm. I started to lean towards this being more likely to be Parkinson’s than MS.
The onslaught of change really kicked in in 2010. It was such an incredibly tough year. Still, the years rolled on and the tests continued relentlessly and they all failed to achieve a definitive level of certainty.
A Date with Destiny.
Yesterday, I arrived at Ipswich Hospital and I just told myself that this surely has to be the day when I get to find out what causes the other symptoms, not explained by Fibromyalgia. I actually felt at my wits end and utterly exhausted. I was close to the limit of what I could reasonably continue experiencing in life. I needed to know my diagnosis and I needed treatment, urgently.
I put my Blue Disabled Badge on the dashboard, I did my usual careful swing and hoist out of my car and slid open a side door of my new automatic car; with nice rear sliding doors that made opening doors so much easier for me. I reached for my trusty walking stick and just thought about how, with so much disability, I still have not achieved a full and clear diagnosis. I felt a surge of incredulity that was not unfamiliar to me. I felt the stress increase within me as my frustration, and desperate search for a diagnosis just welled up inside. “I’ve had enough”, I thought. “I just want this constant testing to be over”.
I began my slow walk to the hospital entrance, occasionally dragging my right leg, slowing down and even stopping at times. My right hand was twitching while, inside, the relentless sensation of an inner vibration, that nobody can see, beat it’s rhythm. I registered at Reception and was directed to the clinic I was to attend. I was booked in to meet a Neurologist who leads the Parkinson’s services.
Struck by a Train.
I arrived in the waiting room, where a bright wall hanging tv screen featured the tv show ‘Escape to the Country’; ironically the show that used to represent my dream of leaving London for a life in a rural country village by the sea. This was a move that Kevin (my partner of almost 21 years and husband of several months) and I made back in 2007.
Then, I saw the other patients; none of whom appeared to be under 75 years of age. I was alerted to their twitching, shaking and stooped gaits and I felt a massive wave of nausea hit me like a locomotive. Apart from the guilt I felt at my reaction to these poor, lovely folk, I was hit by a major reality check; for I saw myself in them, I recognised amplified versions of my own symptoms and I felt utter terror. I knew for sure what I had long suspected and suddenly the idea of going in to meet the Neurologist left me battling the urge to get the hell out of there and go home, as if this was all some big mistake.
I calmed myself. I knew that I needed answers and I had come so far to reach this point. A Nurse appeared. She called my name and asked if it was okay to weigh me and take my blood pressure. I joked, in front of everyone, that it is never okay to weigh me! She gently escorted me to a brightly lit room, with light yellow painted walls, in which a very wide chair was the weighing scales and she took my jacket and asked me to sit. I struggled to get into this oddly shaped chair, with it’s white metal arms and foot rests, and she set about recording my weight and taking my blood pressure; both of which were higher than I would have liked. I cracked a joke about my weight and another quip about my blood pressure being due to my sudden terror! The Nurse, as Nurses usually are, was a wonderful, kind, sincere, helpful bringer of comfort and reassurance.
Back to the waiting area I trundled, to watch clips of rural heaven on tv while catching myself avoiding any glance towards my fellow patients; my inner voice telling me that I am “…far too young to have Parkinsons Disease…”.
When Your Number’s Up.
Then, my allotted number, that I had been clutching on a ticket in my sweaty palm, appeared on the screen and from around the corner a middle-aged chap appeared who looked exactly as all Neurologists seem to look; somehow the role just seems perfect for them. He had the usual incredibly kind and reassuring countenance and suitable spectacles. So began what became an hour and a half of reflecting over my years of symptoms along with observation of me and of my physical symptoms in the room. This chap was not the man I was booked to see, but he did the ‘groundwork’ before the senior Neurologist joined us.
I continued to respond to symptom based questions, tick box questions and anecdotal questions and focused on trying to control my hand; the twitching made worse by my stressed and exhausted state. I was asked to write a paragraph, which was almost illegible, as usual. I wrote something humorous about the dullness of having to keep coming to hospital! These two talented men asking me deep and personal questions about everything.
“I am going to speak of a word that is going to represent the changes you have experienced. Parkinsons. I could send you for a DAT scan, but I think my colleague will agree that, taking your very long history of this ordeal, over fifteen years of tests and monitoring and what we have heard and seen today, I do not need to send you to Addenbrooke’s Hospital to make my diagnosis; for it is incredibly clear and evidenced. You have ‘Young Onset Parkinsons Disease’…”. I held my breath. “Yes, you finally have your diagnosis, Mr. Parsons. I am diagnosing you completely and conclusively”. I remember going red and welling up with tears, but then the relief hit and I just sat in some sort of frozen state, soaking this up.
In Walks the Actor.
I recalled how actor Michael J. Fox described the moment he was given his diagnosis, from his autobiography. “This is my moment”, I thought to myself while the Neurologist outlined what Parkinsons Disease is. “This is what it is like, in my moment of being diagnosed”, I kept thinking. I was somehow detached from myself, yet fully hearing everything being said to me. “This is what it is like to be diagnosed, finally”, I thought. It was as if I was trying to communicate with Michal J. Fox by telepathy so that I was sharing my version of being diagnosed, in response to his.
I was just somehow very calm, though silent and detached. “This is the moment I have been heading toward. This is what it feels like. This is the person who is telling me. This is the room that it is happening in. This is the day…today”. I felt a panic….”What is the date…oh my God, I need to know the date of The Day that this is happening. Why can’t I remember the date?”, I wondered as my mind went blank. I chuckled to myself, at how silly that was, all the while listening to very kind men in front of me as they described the rest of my life, of which one said “…and all going well, in terms of life expectancy….I’d say up to thirty years…research is always advancing…..”. “Blimey”, I thought, “Not only have they described the rest of my life, but they’ve put a number on it”! I didn’t expect that.
I asked more about life expectancy and learnt that, until the mid 1980’s, people with Parkinson’s would mostly die within six years of diagnosis! I was told that the minimum I should reasonably expect would be seven years and the average around fifteen years, from the day of diagnosis. Obviously, stats are just data referring to other people and who knows what my own story will be, but this actually proved helpful to me. Being aware of something like this helps you to better evaluate what you are doing in life, or simply within any given day.
Leaving with Something.
After twenty minutes or so of discussion and a plan for the next week of the first stage of my new treatment plan, I found myself making my unsteady walk along the corridor and out to my car, a handful of papers and leaflets in a very sweaty grasp. “I’ve got Parkinsons Disease” was a phrase I found myself repeating in my head, along with “I’ve done it”, “I finally know” and “Oh shit”!
I also reflected on just how wonderful our NHS is and how scandalous it is that our Government has left the NHS and it’s incredible staff in such a desperate and unforgivable state of poverty and distress. That’s not an uneducated statement, I am a former Specialist Services Team Leader within the NHS and a former Commissioner of health services. I state the fact of the matter.
Yesterday afternoon and evening I broke the news to my spouse, family and friends; the latter via a simple Facebook update. I am deeply touched by everyone’s kindness, love and support that flooded in, by response. I slept badly all night, just in a state of stress, but that eased over the hours. My biggest worry was for my spouse and life-partner. What a thing to have to face.
A New Dawn.
This morning, I have awoken to what I am regarding as the first day of the rest of my life. I no longer have Fibromyalgia. It has ‘morphed’ into Young Onset Parkinsons Disease (please don’t think that happens to everyone. I am told I am one of the rare ones to get YOPD and most people diagnosed with Fibromyalgia simply retain that one illness. It was always known that I had something else, lurking beneath). I chuckle at the idea of being labelled as ‘young’, in the name of this slowly degenerative disease. At 45 years of age, I’ll take all the compliments I can get!
So, I’m taking the day off work. Today’s clients, all of whom see me for Skype Counselling on a Wednesday, are aware and are happy to see me later this week or next. I just need to get some practical matters sorted out, recharge my batteries and then back to normal life with a new name for my symptoms.
Clarity. A new beginning…
(c) Deano Parsons 2017.