I am Idiopathic

‘Of Unknown cause’ or ‘Idiopathic’, that’s me! I have always wanted to be a mystery, not quite being definable, not quite a stereotype. However, in a strange way I have lived with a lesser sense of purpose, ‘with an unknown cause’, than I feel like I am living or starting to live now. I feel strangely happier (or perhaps that’s the meds) and I seem to have a better sense of perspective. I heard on the radio this morning a saying by Confucious which goes: “you have two lives, and the second starts when you realise you only have one”. That mostly sums up my response to the diagnosis, an inescapable change in the way I now look at the world. Although some part of my positive stance may be because, after nearly one month of treatment, my mind is positively boosted with more abundance of dopamine. Nevertheless the saying  resonates so clearly to me , they are wise words indeed!

In that sense I can only be positive about the wake up call PD has given me. A chance to do things differently, a chance to be more reflective, a chance to try new things, a reminder that you only have a finite amount of time on this earth, and time left to do or be what you want, to whatever degree that may be. So it’s a small thing but I wouldn’t be writing this blog without PD!

Back to my diagnosis just to set that down on record. My physical symptoms go back a year or so ago before going to my GP. I had a tremor occassionally in my right hand, mostly noticed when using a spoon or fork (I have also had an action tremor for sometime, for example, I would sometimes shake on reaching for a tricky cup of coffee whilst having a 121, especially if the drink was very hot or very full). I had also begun noticing a tremor more in stressed situations, like trying to text after rushing around and waiting for a train , hoping to make my meeting on time , or when eating lunch at my desk – often after a busy morning and feeling stressed trying to fit lunch into a day with too many deadlines!  Then in July 2017, after driving to the Loire valley on holiday, I complained of a stiff right arm, but somehow different to just the result of a long drive. That night I lay awake worrying about what was going on and my general feeling of being low which I had also been feeling for sometime. All very small, possibly trivial things explained as age related or just feeling sorry for oneself. However, I consulted the online Doctors and concluded I had MS. MS being indicated alongside Chron’s Disease which I also have/had (another story!). Anyway, I cried that night – I knew there was something wrong and I remember having a funny feeling it was probably in my brain.

Then during 2017 things started to emerge in a more definite way. My Mum saw me walk across the garden in July without swinging my right arm and asked me what was the matter with it. Also various people at work had, at different times, asked me what was wrong with my right foot as if it was injured. I shrugged those off but knew my foot kept scuffing the ground. The tremor also became more frequent and progressively more noticeable, although occasional or at times of stress. My wife noticed it in September whilst we were eating Sunday lunch and asked me what was wrong and told me I had t go to the Doctor’s.

So on September the 27th I went to see my GP and relayed all these things & that my uncle had also had Parkinson’s. She made me do a few simple tests: hold my arms out, open and make a fist, walk up and down. She then asked me what I wanted to do…….’wait 3 months , get on with life or find out one way or another now” was the way she put it. I was taken aback a bit , I had honestly expected the response to be some blood tests and may be come back in 6 months. However , I said I would check with my wife but yes go ahead and refer me to a neurologist.

So I came home and googled Parkinson’s properly, I checked the symptoms on Parkinson’s.org and there it was……. the bit about you could have a resting or action tremor. Up to then everything I had been reading had said you had to have a resting tremor to have Parkinson’s. From that point on, in my heart & privately, I knew I had Parkinson’s.

That night I relayed what had happened at the GP to my wife, it was a shock and saying to my wife that the GP obviously suspected Parkinsons, it hit me. I cried, we cried!

Somehow you go to bed though and wake up being positive and believing it will be nothing, probably just an age related tremor. The first trip to the Neurologist came round a week later (thankfully I had private medical insurance), he examined me and took my clinical history, and said “I think you have benign essential tremor, but there are some things over and above that which I want to investigate further”.

Obviously, I knew where he was going but I relayed those words to my wife whilst sitting in the car park outside the hospital & took comfort in her thoughts that essential tremor sounded positive. However, I knew it was Parikinson’s but couldn’t say that!

The Neurologist had ordered blood and copper studies , (tests for Thyroid function and Wilson’s disease) plus an MRI scan. During the next couple of weeks I had letters back telling me those tests were fine & everything was normal.

Then came the follow up consultation. He begun by explaining the results were normal and asked me how I had been. I remember complaining about stiffness in both arms but mainly right side. He then examined me again, agreed he could definitely feel rigidity in the right arm. He got me to do a finger snap test, and we could both see I was miss-timing in the right hand only and it was a lot slower than the left. He asked me to sit down again and said “I have changed my mind….there are some things I would like my collegue to take a look at , a movement disorder specialist” I can’t quite remember whether he used the term Parkinsonism but I remember pushing him for some clarity and said to him “is my conclusion that I have signs of Parkinsonism but we still need to find out what is causing it?”. He confirmed, yes!

Back to the car park to re-Google ‘possible causes of Parkinsonism’ , the results were it was most probably Essential Tremor or Parkinson’s. I again relayed from the car park to my wife what he said. I knew it was Parkinson’s!

The first meeting with my movement disorder specialist was on the 20th November 2017, he is a very calm and authoritative man, with a very well respected position in his field; so I was pleased to be meeting him. This was the first appointment that my wife had come to as well. I remember thinking we’ll probably agree that he would need to see me again in a number of months as my symptoms could still be explained as something else less dramatic, therefore, we should check in a few months.

He had the referral notes in front of him and begun by asking some background questions. He then tested me , running through similar tests to before but also counting backwards from 100 in 3’s and then 7’s. He noticed a slumped right shoulder, rigidity, some slowness of movement (he got me to tap my fingers out on the desk – which was difficult for me). He also got me to write out “this is my best handwriting” five times, in lines, one beneath another and to draw a spiral.  He then said to me : “well I think my colleague is right, you have Idiopathic Parkinson’s”!

Although, I had already thought the same, nothing really prepares you for that confirmation. I remember feeling numb and summoning as much stiff upper lip as I could, to not lose it. I didn’t look at my wife as I thought that would make it was , I just continued looking at my Neurologist as he began talking about treatments. He also told me to tell the DVLA and my work. We agreed he would arrange for a DATScan although he said my reading would not be normal, and even if the result was inconclusive, it wouldn’t change his diagnosis. We left , walked out to the car and both sat and cried, again!

So that is that. That is my diagnosis story and how I came to have Idiopathic Parkinson’s.

Idiopathic is an interesting word, it sums up the problem of curing PD , in that whilst the cause remains unknown, a cure is going to be hard to find. There is a lot of hope though and a lot of research going on. Idiopathic also captures my life before PD (except my beautiful wife and amazing son – they have been my cause!), but in someways and being honest, I haven’t quite lived up to my own expectations, not in a bad way but just in a normal way of questioning whether I could have done something more fulfilling, have a better cause and sense of purpose! In other ways Idiopathic doesn’t quite make sense as a description of my Parkinson’s either, as I believe I was born to have PD, why I don’t quite know, in time I will find out but I have faith it was my destiny. Idiopathic is formed from the Greek words ‘Idios’ and ‘Pathos’. I am definitely ‘Idios’ …..”my own…..private…..personal”, that has always been me, and in our individuality that is all of us. I am also ‘Pathos’ …..”suffering, feeling” that’s also me but less so; aren’t we all self indulging at times? So I conclude for now,  I am ‘Idiopathic‘……and I have a disease of its own kind.

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