It has been over a year since I last wrote about my ongoing experience of life with Parkinson’s. The world has changed significantly for all of us during that time. Today is World Parkinson’s Day. So, now seems like the right moment to write about what life has been like for me in these strange times.
When I wrote my previous update, “Removing The Mask of Parkinson’s”, I was at a pretty low point. Changes I had made to my medication had severe negative repercussions for my physical and mental wellbeing. For ten years, I felt that I had coped pretty well with my condition but, suddenly, I was feeling incapacitated and helpless. Little did I know that things were about to get worse. Removing The Mask was written at the end of January 2020. None of us knew what was waiting just around the corner. At the beginning of Spring last year, I was still struggling to deal with changes in my Parkinson’s symptoms, so, when Covid arrived up and turned the world upside down, it sent me into a complete tail-spin. I did not cope well.
The basic cause of Parkinson’s is a lack of a chemical called Dopamine in the body. One of the functions of Dopamine is to enable electrical signals from the brain to the muscles to travel smoothly and normally. Hence, the most common and obvious symptoms of the disease are tremor, shaking, slowness of movement and a tendency to stoop and shuffle when walking. However, Dopamine does several other jobs, one of which is to raise your mood, keep you happy and positive. So, when you take away the Dopamine from a person’s body, they will not only experience the aforementioned motor difficulties and have problems walking and looking after themselves, they will also have a tendency to get depressed. Not being able to tie your own shoelaces, button your shirt or pour out your own Cornflakes in a morning is depressing enough in itself, but to have to take this on board whilst being short on the chemical in your brain that normally enables you to remain positive in this kind of situation, is tough. My normal way of dealing with this had been to build myself a daily routine that combined two important factors: Physical Exercise and Other People. Strenuous exercise has the effect of producing Dopamine and endorphins in the body, both of which are mood enhancing. Misery loves company because being around other people stops you focussing too narrowly on your own concerns. Hence all the tai chi classes, triathlons and charity treks that I have embarked upon since being diagnosed. My wife, Jo, says that I have a tendency to become obsessive about these things. Which is true, I admit. But it has just been my way to keep my head above the water.
So, when Covid struck, the first Lockdown was imposed and we were all confined to our houses, my usual coping mechanisms were taken away from me. My preferred forms of exercise are long walks, run, swims or bike rides. I like to be outdoors and hate being in gyms or swimming pools. I was already dealing with the fact that whereas, a year before, I would happily have run 6 miles cross country, I now found it a challenge to walk to the end of my garden. My plan had been to gradually build up my strength by walking with family and friends. I have completed numerous challenges to raise money for Parkinson’s UK – marathons, triathlons, 50 mile hikes, multi-day treks – I know how to train to improve my body’s capacity to work to increasing levels of demand. But, now, the tools that I would usually use to do this were not available. I didn’t know what to do. I started to panic and began having attacks of anxiety and terror. This was new ground for me. I am generally a very positive person and I have never really suffered from anxiety or depression. I had no defence mechanisms and, fuelled by an endless torrent of TV images of dying faces gasping for breath, I spiralled into a horrible pit of sleepless nights, hopeless days and constant worry. I became irritable, short tempered and difficult to live with. My son was back from Manchester where he is studying to be an actor and was trying to hold his own life together, doing his best to stay positive about his future on a diet of Zoom classes and reduced timetables in his bedroom upstairs. I was unable to offer him much support. My wife had to try and keep the wreck of family afloat at a time when her own work vanished leaving us with no income apart from my pension. She deserves a medal – no, a thousand medals.
Something had to give.
I think that I probably had some sort of breakdown. I certainly felt torn apart, eaten up and spat out.
Salvation comes in unexpected forms. Mine came in the shape of an ancient, pagan god. I am not going to go into the details of what happened here. That’s for another time. To cut a long story short, I began writing poetry. A lot of poetry. I have written poems most of my life. Just for my own entertainment, mostly. But, now, poems were pouring out of me. Which provided a focus. Something to do each day. A reason for existing. Gradually, the poems became a book, which I eventually published. It’s called “Pan’s Footprints” and you can find out more about it HERE or by going to my other website: wolfwordsandcrowspeak.com
As I regained a sense of purpose amidst the Covid chaos around me, the good old NHS managed to find time, whilst dealing with a pandemic, to look after me as well. In the entire county of Shropshire, we have only one consultant neurologist and one Parkinson’s Nurse. Two people trying to service an entire county. There are over a thousand people diagnosed with Parkinson’s in Shropshire. The service stopped taking new referrals back in 2019. Anybody newly diagnosed with Parkinson’s has to travel out of county in order to receive support. Parkinson’s is an extremely complicated neurological condition with over 40 possible symptoms. Patients require individual attention and specialised care. It is impossible for one consultant and a single nurse to provide anything close to an adequate service. Like the NHS as a whole, the current situation is a result of years of serious underfunding. And it is only going to get worse. Parkinson’s is the fastest growing neurological condition in the world today. The number of people with Parkinson’s in the world has more than doubled in the past 25 years and is projected to double again by 2040 by which time, it is estimated, there will be around 12.9 million people in the world suffering with this condition. And the cost of ignoring this will be enormous. Parkinson’s used to have an image as an old person’s disease, but this is no longer the case: Parkinson’s now typically hits people whilst they are still working. I was diagnosed aged 47. Leaving aside the social, emotional and psychological impacts, and looking only at the blunt, financial cost to nations of loss of productive workforce, provision of medication, benefits and ongoing care, the consequences of continuing to underfund provision for Parkinson’s treatment and care are sobering.
So, I cannot blame a woefully under-funded NHS service, and I am very thankful that I live in a country that at least still provides medical care that is free at the point of need, but I have learned over time that you have to be proactive and persistent if you want to get anything other than the bare minimum of support for your Parkinson’s. I now know which doors to knock at, when to keep banging and when to whisper through the keyhole or move on to a different entrance. I have learned that once you have the consultant’s attention, you need to keep it for the duration – so, don’t upset him or waste his time. Be on time for appointments. Do as he asks. Comply with his requests. Complete all tasks to the best of your ability. Don’t moan. Be grateful. Be as cheerful and positive as you can muster. Make yourself memorable – in a good way! Be charming. Make him want to spend time with you.
So, I filled in chart after chart. Colour coding my days. Marking each hour with the appropriate colour – Green for ON, Red for OFF, Orange for Somewhere in between.
ON means I am able to function reasonably well. Complete most everyday tasks for myself. Make myself a cup of tea. Cook a simple meal. Go for a walk in the park. Or round and round the garden depending on lockdown status.
OFF means that I can’t get out of bed. Don’t have the energy to get washed or the co-ordination necessary to get dressed. I will spend the day in front of the TV letting the steady dribble of Find A New Home in the Antiques Repairshop Ready Steady Quizshow Naked in Alaska wash over me. Waiting for the fog to lift and my brain to click into gear. Accompanied by involuntary muscle spasms, a sudden marked drop in mood and an inability to communicate in any way more sophisticated than sullen grunts. It is a kind of Zombie state. Which is not exactly great fun to live with – ask my wife and son!
Gradually, over a period of months, my consultant was able to use my charts to build up a picture of my condition. Everyone with Parkinson’s has a condition that is unique to them. Yes, there are common features that define the disease (the slowness, tremors, gait and loss of facial expression) but they will combine in a different way for each person. Some of my Friends With Parkinson’s have a tremor, many do not. Some have problems with drooling, some with balance. Some suffer from constipation. Most have trouble sleeping. So, as there is no single, standard form of the disease, there is, likewise, no single, standard treatment that suits all. There are a number of common medications used to treat Parkinson’s but they need to be combined in different dosages and taken at different intervals to suit each patient. And the only way to really find out what works for you and your particular brand of Parkinson’s is trial and error. Which, as all the drugs have unpleasant side effects that get worse as you increase the dosage, needs to be done slowly and carefully. Very slowly. Very carefully.
But, eventually, we got to a point where the drugs enabled me to have a reasonable quality of life. Which, in my case, was pretty much the maximum safe dose. You see, another interesting aspect of Parkinson’s is that it shows a tendency to develop in leaps and bounds. Most people can be treated with medication for the first five to ten years such that they are able to lead a fairly normal and active life. But, when you have had the disease for around ten years, as I have, something changes. It is not that the drugs stop working as such, it seems to be more that the disease itself alters in some way. Some doctors speculate that it becomes a different disease. More research has to be done to find out more about an aspect of Parkinson’s that is still something of a mystery but, with increasing numbers of people developing the disease earlier in life and living with it for longer than ten years, will become increasingly important.
In my particular case, it means that I have reached the end of the line in terms of medication. If I put any more drugs into my system, I will explode! It certainly feels that way at times. I currently take a cocktail of six different drugs administered in different doses at ten separate times each day. My life is not my own. My life is operated chemically. In order to function anywhere near reliably, I have to take the big yellow pill at this time and the small white tablet at that time. And I have to wait at least an hour after taking the big yellow pill before I take the blue pill which has to be taken at least an hour before the little yellow pill. If I forget or make a mistake, it can wipe me out for days. So, I take the tablets. And I am careful. Very careful. Which sucks a little of the fun and spontaneity out of life – but it’s better than the Return of the Zombie that getting it wrong entails.
Which would be fine, I guess, except that I am on such a high dosage that there are some pretty unpleasant side effects to deal with. The most obvious is dyskinesia – involuntary muscle movements that are hard to control. These include twitches, jerks and writhing movements and look like the person is doing some weird, psychedelic dance routine. I get this when the drugs are at their highest level in my bloodstream (peak dose). At the moment, I am able to use my tai chi training to control it but if I just let my body go with it I cut some strange shapes. I also get frequent muscle cramps which migrate around my body according to the time of day. In the morning they are most commonly in my arms. During the day, in my back. In the evenings (and sometimes throughout the night) my big toes get it worst. These can be extremely painful and debilitating. Like thumbscrews being relentlessly tightened making sleep impossible. And I have a constant unpleasant, metallic taste in my mouth. I can’t taste much food anymore. And I have a powerful chemical smell that periodically fills my head and makes me feel nauseous. Then there is the burning sensation that I get in my eyes most evenings – like my tears are acid. And then, every now and again, one day in every seven it seems, and for no particular reason that I can fathom, the drugs just stop working and I have to accept that I will, once again, be King Zombie for the day.
I have accepted that medication is necessary for me to be able to live with my Parkinson’s but I know that it isn’t the whole answer – for me or anybody else. I have felt for a long time that how I lived my life was going to be just as important as any drugs I might take. That is why I took early retirement and packed in a stressful job as an Assistant Head in a Secondary Comprehensive School. I knew instinctively that doing lots of daily exercise, spending the majority of my time outdoors in Nature, eating well, following Creative pursuits and allowing Time for Spiritual Development were going to be vitally important.
In my next post, I will be exploring, in more detail, the strategies I have used to make Life with Parkinson’s a Joy as well as a trial.
Thank you, Andy. You write so well and with such openness and honesty. I really feel thatI have a deeper understanding now. I look forward to your next instalment.
I appreciate your sharing your experiences with Parkinson’s. I was diagnosed in 2015, when I was 61, though like most people started having symptoms several years before. Like you I have found exercise to be really helpful (including BOXING which it turns out I LOVE – who knew – and yoga, which have been doing for years and has proven to be incredibly helpful). Also like you, I have found covid to be a big fat drag – I have been doing exercise classes on zoom but it isn’t the same and I miss the cameraderie. I’ve also been doing some writing around Parkinson’s and would send you a short piece I did about Parkinson’s if I could figure out how. There is also the drug regime, which is slowly creeping up, and the doctors (I am lucky that where I live in Vancouver is home to a major Parkinson’s and movement disorder research centre).
I’m really looking forward to hearing how Pan fits in with all of this.