Episode 11 - First Boxing with Parkinson's a win, knocked out in first round with London PD consultant [and no Likes please]

30th June 2021 - 5th July 2021

Random lyric #6

Send lawyers, guns, and money
The shit has hit the fan

Warren Zevon, 1978

Boxing with Parkinson’s 

30th June 2021

For years I’d hankered to box - to actually punch someone - and I suppose be punched back - though I didn’t dwell much on that part. It came out of a vague sense that I needed to explore fighting and physical contact. ¹

My son Donald had given me some practice at fighting. First wrestling - which I  always won - until  one Easter holidays when he got bigger than me. And a bit of boxing - which was when I realised I did not like being punched much at all - especially not by my dear child who did not believe in pulling his punches (revenge for all those years of losing) I was, basically, as Alex Salmond (can we still say his name in company?) said of David Cameron - ‘a big fearty.’ So it was both cheering and ironic that at the age of 75 as a Parkinson’s person I was eligible for boxing classes in Camden. 

It was also a great story to tell my friends.

It was also my first chance to meet other PP’s in the flesh - up until now my only contact had been on Zoom calls. Contact being not really the word - sighting would be more accurate, as I had not spoken being too nervous of my speech messing up. And the sightings had been sobering - most of the others in the online meetings seemed much older and frailer or more visibly affected by the condition than I felt myself to be. 

Having dressed in what I thought the right combination of T-shirt and track suit buttons I set off for Swiss Cottage, curious, excited and a bit nervous.  To fire me up I bought a cappuccino before getting on the bus. Half of which I promptly poured down my pristine T shirt - tres Parkinson.  At the gym my stained T shirt and spillage story were met by smiles and understanding. I liked George, who ran the group (and owned the gym?), a friendly and relaxed guy.   Again it seemed to me that I was less physically affected by Parkinson’s than the others. I felt a bit of a fraud. Of course the others might have been thinking exactly the same about me.²

The class started with the five of us walking round and round the thickly matted floor, doing exercises to help maintain manual dexterity, coordination and speed of reaction. First walking a ball with our fingers up one arm, across the chest and down the other. Then walking and tossing the ball from one hand to the other. The trickiest was balancing the ball on the back of the hand, flipping it up and catching it palm down - with a fast downward sweep. I was never that good at ball games and spent a fair amount of time chasing around after the ball I’d dropped. Then George led us through some warm up eccies - all good so far. Though I found following George’s moves in the mirror a tad tricky at times.  I’m dyslexic and was traumatised in my teens by large ladies yelling instructions at Scottish country dances (the words ‘eightsome reel’ make me feel faintly ill even now). Trying to move in sync working with a mirror can be a mind bender for a dyslexic - ‘so his left in the mirror is actually right? mmm…`’

Finally George told us all to put on gloves - this was it - the bit I’d come for. We took turns punching his gloves - deeply satisfying whack, whack whack,  left left, right then ducking and weaving as he tapped the sides of my head. George was very forebearing ‘ No Nick, left foot forward and jab left left right.’  ‘You’ve got a good punch’ he said - ‘ha! Yours glowing with pride’. 

There was tea and biccies after the class and for the first time I talked to other Parkies about our health and medication. Nothing very seriosy but I found it tremendously consoling to have others say how the condition had been hard to diagnose and that basically there seemed no great certainty about the treatment. ‘They [the doctors] don’t really have much of a clue.’ 

I took the bus back to Camden feeling very made up about the whole thing. 

Knocked out by London consultant

5th July 2021 Camden

Because of COVID I’d had no face to face meetings with the Devon consultants since the horrendous needle in the tongue episode. Prior to that I’d had two long sessions with Dr Alex Shah at the Derriford Hospital in Plymouth. Dr Shah was friendly, engaging and very thorough in his physical examination and questioning about my symptoms (he also had a terrific Mont Blanc pen and a very handsome briefcase - two items that I’d indulged in in my past which made him an even better doctor in my eyes). 

Because at first he’d diagnosed Motor Neurone Disease (estimated dead by date three years from diagnosis) I’d asked to be referred to the National Hospital For Neurology in London for a second opinion. During the lockdown I’d had two Facetime consultations with Dr Katie Sidle an MND specialist from that hospital. She too had been very friendly and thorough and I felt, despite the limitations of  Facetime, that I’d been well looked after both in terms of physical health and also my mental and emotional wellbeing. Dr Sidle had decided that I did not have MND and her conclusion was it was some form of Parkinson’s. Dr Shah then prescribed me a dopamine agonist Ropinerole and an antidepressent Mirtazapine and  referred me to a colleague of his who specialised in PD as he still felt there were some anomalies in my condition that needed further explanation.  

I then moved to London and so the meetings with Dr Shah’s Devon based colleagues did not happen and my case was transferred to a Parkinson’s specialist at Queen Square.  The medication had not seemed to have much effect in that I still felt as rough and as brain fogged as I had for the past nn years. The 5th July 2021 was my first face to face encounter with a specialist for over a year.  A few weeks earlier an advisor from the charity Parkinson’s UK  had counselled me to go armed with lots of questions about my condition  eg how sure were they of the diagnosis, how confident were they about my medication etc etc. Don’t underplay your illness he said - or they’ll just brush you aside, really stress every symptom you have. I took all this to heart and on the morning of the 5th went over and over my questions as I made the 20 minute walk (doing the right thing - walking as briskly and as properly as I could muster  from Camden to Queen Square in Fitzrovia. After the usual lengthy Covid days process of being checked for potential toxicity I sat and waited. 

Eventually a man appeared and asked me to come in. I sat and he introduced himself as Dr J****n and asked me without any niceties or warm up what my symptoms were. I began with my voice problem -  when I said my voice sped up uncontrollably he frowned and said ‘what else?’ as if (it seemed to me) the voice thing was not worth pursuing further. His lack of warmth and apparent dismissal of what was the most disabling of my symptoms reduced me to a jelly. All my planned questions evaporated - my mind went blank. I said something about feeling really bad most mornings - ‘really out of it and disconnected’ was the phrase I used. But again there was no interest let alone empathy.

‘Come outside’ he said and then asked me to walk up and down a corridor. This was where I should have wobbled and stumbled about I suppose but because I’d walked for twenty minutes my muscles were relaxed and I simply did what he asked which was walk pretty normally up and down. He then did another classic test which was to ask me to bring my fingers to my thumbs as quickly as I could (like two quacking ducks I always thought) again I should have fumbled this but I have some instinct to (God knows from where - perhaps my Scottish schooling) to perform as well as I can and so did that making my fingers do there thing with some efficiency. Similarly with the last test which was with both hands at once to bring each finger to tap the thumb - again I did my best…

He went back to his desk and pronounced somewhat dismissively ‘well you have Parkinson’s but very mildly.’ I was dumbfounded. I’d been feeling totally shit for a year or more and had been until quite recently considered to be terminally ill - now he was saying I hardly anything at all…I manage to say ‘but what about the very bad times in the morning and feeling so out of it? And I wanted to be sure I was on the right medication - could there not be something there?’ ‘No’ he said ‘I’d say that was because of your depression, I’d suggest you increase the dose of the Mirtazapine and see how you get on.’

And that was more or less that. I did my usual ridiculous over polite thank you’s and left. What a fucking waste of time. 12 months waiting and that was what I got - take more antidepressants. 

I walked home seething and a day later wrote a long polite email to the consultant explaining that because of my speech condition I had failed to make clear my concerns and could we revisit my diagnosis and symptoms in a follow up meeting [full text of letter here ³.

I had no reply, In due course I did get a letter with an appointment for mid-January.

COMING NEXT: HIGH BARNET 3, DRUNKEN DINNER, A PUBLISHER NODS APPROVAL

And please no Likes - I’d rather have a one word comment about how you felt after reading this than a Like. So ‘depressed’, ‘enlightened’, ‘bored’, ‘jealous’ etc any word at all but not a Like!

1. Which in turn came out of equally vague and underexamined idea that men of my generation (and background) are somehow soft compared with generations before us because we’ve had no real experience of conflict…To my shame (now I have seen the results of the war in Ukraine) I used to say we needed a war so we could all get real. 

2. Burns “To A Louse.."‘

O wad some Pow'r the giftie gie us

To see oursels as ithers see us!  

3. Dear Dr Jarman

I was glad to meet you on Monday, because of COVID and my move to London it had been over 6 months since my last face to face meeting with Dr Shah. 

As you will see from Dr Shah’s last letter to me he was still unsure of the Parkinson’s diagnosis and was referring me to one of his colleagues in Plymouth who specialises in Parkinson’s disease.  I am writing to you now because after I had left you I realised I had not expressed clearly a number of concerns I have. 

Dr Shah was uncertain about the Parkinson’s diagnosis after two lengthy face to face consultations where he put me through  extensive physical examinations. So I was quite surprised  that you came to your conclusion that I had mild Parkinson’s after what seemed a relatively brief observation. Of course I was relieved to be told that it was Parkinson’s and it was mild because one seeks certainty and assurance, but on reflection I wish I had questioned you about this more.

I also wish I had asked you more about the medication. Dr Shah initially prescribed Levadopa, I recall on the basis that if I didn’t have Parkinson’s it wouldn’t work. I asked for Ropinerole instead as I had read about the problems that Levadopa can cause in the longer term. I really can’t say that Ropinerole has worked as my symptoms have not (so far as I can recall) really changed since taking it. Everyone else that I have met so far who have PD are on Levadopa and so I would have liked to have your opinion on changing over to that. 

I also wish I had persisted a little more in telling you about my concerns about the ‘out of it’ symptoms. These are really very severe and seem to me more physiological than psychological - when I said I felt I could not connect with the world - it doesn’t seem like a state of mind - it is as if I were on drugs or physically ill - similar to a sort of delirium. These attacks are sometimes accompanied by severe physical shakiness - my whole body becoming very shaky and I feel very weak and unsteady. The extreme version only happens once or twice a week, nearly always in the morning. But the less extreme version happens every morning and is very disabling.  I had been hoping for months that these attacks could be discussed when I had a consultation. Unfortunately I did not press you enough when you said this could have nothing to do with Parkinson’s and prescribed an increase in the anti-depressant.

You did not mention a follow up consultation, but my understanding from reading booklets published by Parkinson’s UK that regular check up are recommended. I also hoped that you might suggest I am referred to a Parkinson’s Specialist Nurse for ongoing support between consultations. Is this something you would arrange for me?

I wish I  had been much clearer and more forward in expressing all this when I was in front of you and I hope it is helpful to have this follow up now. I would be tremendously helpful if you had time to reply - particularly on the question of medication and about trying Levadopa as I’m not really very keen on increasing the anti-depressant. 

If you don’t have time to reply please can you arrange for a follow up consultation in a few months?

I am very glad that I am being referred to Dr Tripoliti.

Apologies if this is less than elegantly expressed.

Sincerely

Nick Comer-Calder