I attended my first post-diagnosis review at Ipswich Hospital, yesterday, with my Neurologist. Arriving at hospital was for me, as I am sure it is for most people, a trigger for a reasonable amount of stress and anxiety. Entering the hustle and bustle of this busy building was a stark contrast to the peace and tranquility of my quiet, rural village.
Then there was the uncertainty of where to go, followed by registering at the desk of the very pleasant Receptionist; a middle aged woman who spoke gently in her lovely Suffolk drawl as she peered over her gold-rimmed spectacles and handed me a ticket with a ‘call number’ on it. She directed me to the Parkinson’s clinic and a few minutes later, I arrived in the waiting room. I was last in this room in June. I left that appointment with a life-changing diagnosis of Young Onset Parkinson’s Disease.
A Mexican Wave.
I sat in the large, painted yellow waiting room with its uncomfortably bright lighting; dominated by a significant wall-hanging television that featured a BBC1 garden-makeover programme. Just as the big reveal was being made to the unsuspecting beneficiary of the transformative garden makeover, the tv suddenly displayed a seemingly endless animation about Ipswich Hospital. The few elderly patients in the waiting room with me all murmured their annoyance and disapproval that the key moment of the programme had been interrupted by this very bland animation. There was a ‘Mexican Wave’ of sighs and more murmuring when the tv show reappeared and the credits rolled; the high point of the show having been lost to the hospital animation.
Before long, a friendly Nurse appeared; a short middle aged woman with dark hair and a kind countenance. Her dark blue uniform had been ironed immaculately. I followed her, noticing her standard ‘sensible shoes’, as she took me off to be weighed and to take my blood pressure. I was delighted that I was a few pounds lighter than on my last visit but my blood pressure was still higher than I would have liked. The Nurse agreed with my assertion that my blood pressure was only high because I was in hospital, something she must hear hundreds of times every day, and I was then ushered back to the waiting room. Just a few minutes later, my ‘call number’ appeared on the tv screen and seconds after that, my Neurologist arrived to greet me and to escort me to his consulting room. I felt my heart pounding as I walked, with the aid of my trusty stick, to his room.
Out of My Comfort Zone.
Then began a gentle discussion about how I have been over the past two months and, given that my profession is that of a Counsellor, Psychotherapist and Clinical Supervisor, I found myself out of my comfort zone; clearly in the role of a patient. I was impressed that my gently spoken Neurologist asked me quite a lot about how I was coping with my new diagnosis, from an emotional standpoint. He took great care to explore the emotional impact of being given such a life-changing diagnosis and my understanding of the disease. He is a slight man, somewhat ‘Professorly’ in appearance and, like the earlier Receptionist, peered reassuringly over his spectacles when emphasising a particular point or when simply evaluating my response to his explorations. To my surprise, having recognised ongoing physical symptoms, he prescribed some additional medication, the type of which we negotiated from a few options, that would improve the efficacy of my main Parkinson’s drug; Levodopa. He went on to encourage me to do the bigger plans of my life, sooner; for doing them later could become rather difficult. That was the end of the appointment and he escorted me back to the waiting room, having informed me that I would again return in six months for ongoing monitoring.
I found my way out of the hospital. It was quite a long walk back to my car and so I had to stop every so often to manage the inevitable pain and stiffness in my right leg; something I have to do, otherwise I would be hit by the excruciating cramping that I now know to be caused by the Parkinson’s. Finally, back in my car, I set off for home.
Then, it hit me.
In the most unexpected and bizarre way, a sense of panic, upset and fear just washed over me. It lasted only for a moment or two, but it signalled a realisation; I really do have Young Onset Parkinson’s Disease! They hadn’t made a mistake. This wasn’t some bizarre temporary experience or even a dream. I have Parkinson’s. I have a very ‘difficult road’ ahead of me and I am going to become increasingly disabled, for it only gets worse from here on in. There is no cure. This is it.
Use ‘The Force’.
I then did what I have always been able to do, and something I encourage my clients to do when in difficulty; find my positive internal voice. “It’s okay”, I told myself. “I can do this”, I went on. “Just take one day at a time”. I spent most of my journey home thinking about my priorities and plans in life, my partner and I thought of many proactive steps that I can take to make the best of life now and in the future. I suddenly felt renewed and empowered; this disease is not going to get the better of me, certainly not without a fight. I am prepared to adapt, but I sill choose to live a full life and I will maintain my ‘what I can do’, as opposed to being a ‘what I cannot do’, attitude and approach.
Getting On with Getting On.
So, here I am. Bring it on.
Now, back to my work, my studies and my life goals. Yes, every day is incredibly difficult in so very many ways, but I just have to find a way to get on with it.
If you have been affected by Parkinson’s and want to comment about your own experience, please feel free to do so, below.