thoughts on Parkinson's Disease

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Thoughts on ... 29/4/24

Parkinson's Disease:

Living with life – its downs as well as its ups

Not forever in green pastures

Do we ask our way to be

But the steep and rugged pathway

May we tread rejoicingly (1)

I like to think I have been, and still am, fairly positive about the experience of having Parkinson’s but others may think differently. Whether I am positive or not, I thought having a look at the word in the context of my condition could at least give me the opportunity to raise awareness of some of the realities.

I am not sure being positive all the time is the best approach to life. There is nothing wrong with being realistic and acknowledging that life has its downs as well as its ups. This isn’t glass half empty stuff, just realism. Nor is it about victimhood. Which is why I have reservations about the approach of the Parkinson’s UK website with its over-emphasis on the positive and its reluctance to confront the negative.

The living with Parkinson’s mantra is fine – no choice about this really – but sending the message that this can be done by doing park runs, or going on cycle rides or working out at the gym does not help those who are unable to do these things. It seems to me that the emphasis on the site is on how to deal with fairly mild PD not the more advanced stages. Good luck to those who do park runs and go to the gym but I wonder how serious their symptoms are. Before being struck by Covid I was able to do long walks, do my conservation volunteering and do my gardening despite my PD.

I think the comment on the site that they are not going to call Parkinson’s a disease because it’s not a nice word is rather silly. There are plenty

of other conditions which are termed diseases and are not very nice, Alzeimer’s being one.

It could be that there are other ways to live with the unpleasant aspects of PD if we were to be more realistic about it and accept that often daily life will be challenging. For some there will be the daily challenge of getting in and out of bed, dealing with matters of personal hygiene, or maybe like me, walking from the kitchen to the lounge without freezing and tottering.

As well as dealing with the challenges there are strategies we can employ to distract us We should try to find things to do at home which to enjoy be it doing a crossword, a jigsaw, or drawing, painting, reading, gaming, cross-stitch, virtually anything which helps us escape and we find enjoyable. “Scribbling” is one of mine, either the Mendip book or posts, like this one, for my website. Gardening is another of my escapes, one which is more problematic since my tumble. I now ram a large garden fork into the soil to give me something to hold onto.

Having little things to do on a daily basis which people can look forward to may be better than, say, climbing Mount Kilimanjaro. But I guess there’s nothing wrong with dreams and ambitions. I have a few myself, some more realistic than others.

Having little treats to look forward to can also be helpful in improving one’s mood and sense of well-being – treats such as a favourite meal, or piece of cake, or TV programme. Routines can be helpful – mine are morning and evening exercises, Tai Chi every night, and an afternoon walk.

Setting oneself small achievable targets is another way of motivating oneself, targets in one’s daily tasks, movements, or exercises. These could be as simple as not spilling any coffee grains when transferring them from jar to mug or doing a couple more step ups. In this way we would be getting one over on Parky.

And, of course, having the love, care and support of those close to you is always the greatest source of strength one can have.

It’s a cliché to say we should take each day as it comes but for many people this is probably the best approach. It can allow small segments of pleasure to enter the day and give purpose to the daily round. Not dwelling on infirmities nor being positive about them but simply trying to be distracted or absorbed by other things.

Acceptance of the realities of PD clearly does not mean sitting in a chair all day and being miserable, nor losing one’s sense of humour, nor avoiding chatting to people and nor following what is going on in the local community or the wider world.

Gentle processing and adjusting to a new, unpleasant situation, and not being rushed into conforming to any social expectations as to how this should be done, is my preference. It will not be the pathway others will choose but each to their own. Whichever path people choose encouragement should be given to help them along their chosen way and there must always be an understanding there will be times when they feel very fragile.

The past six months have not been easy – getting to stage 5 Parkinson’s overnight because of Covid, not long Covid, nor anything psychosomatic but the real deal, was seriously unpleasant. It put me in hospital for a month. At my first hospital where I was taken after my tumble I was barely able to move below the waist and was incontinent with bowels and bladder. I tested positive for Covid. I remained padded up and very immobile at the second hospital where it was a while before I could attend to my own personal hygiene. (2)

I wore a pad for a short time when I came home and made use of most of the available medical equipment that has been provided for me – grab rails, 2 zimmers, a rollator, a toilet seat raiser, but not the commode.

It’s still not easy and I don’t see any point or logic in pretending otherwise even if this doesn’t fit the British way of dealing with difficulties - stiff upper lip or humour, or the prevailing habit of putting a positive spin on everything.

So if anyone wants to say that PD or any other illness is thoroughly unpleasant and disabling we should let them say so and not try to shoehorn them into behaviour that might be unsuitable for them. If anyone wants to do a bit of moaning or even some welling up let them do so. As for expletives let them rip but best not in front of others.

People must always be grateful for the care, support and advice they receive and ensure they express their gratitude sincerely. Family, friends and carers should listen and give as much practical help as possible. In order not to become too self-absorbed in one’s difficulties those of us who have them should try to stay cheerful and think of others who are unwell or distressed for whatever reason. I don’t give as much as I should to charity but I make donations whenever I can. I have recently donated to organisations that are working to alleviate suffering in Gaza.

We all know it is very difficult to empathise when we have not experienced something ourselves but if you can imagine having to plan every move you make around the house and say step 1, 2, to get you going you will have some idea of what it feels like. Nor is it easy to walk and carry something at the same time and one has to be careful carrying things up the stairs. If I toppled carrying my lunch from the kitchen to the lounge three consequences might follow: I could hurt myself, I could have a lot of cleaning to do on the carpet and I would not have any lunch to eat. I don't enjoy not being able to move naturally round the kitchen - from fridge to cooker or sink to swing bin.

It is not the same as learning to walk after an op or injury because although you are determined to walk without a totter Parkie is equally determined not to let you. It is all to do with the shortage of dopamine in your brain cells which affects your central nervous system.

I could return to using my rollator which has a shelf on it but for the moment I see that as going backwards. I would rather lunge from doorway to doorway when I seize up which is all too frequently. Having spent a great deal of time training myself to do free walking on the landing which does enable me to walk outside, holding my stick, if I get some forward momentum, I am reluctant to abandon this bit of progress.

To finish on a “positive” note I have recently managed the longest drive I’ve done since being home - to Cleeve, across to Wrington and then Churchill, Sandford and Puxton, and back to Worle. I have also

managed to weed and dig some of my veg plot ready for planting potatoes.

I pay tribute to the work of Parkinson’s UK which must have motivated and brought comfort to tens of thousands of people with PD and their carers. But, in my view, it should not be minimising or normalising the seriousness of Parkinson’s. Too many people did that with Covid and tragically the result was a quarter of a million unnecessary deaths in the UK.

I urge Parkinson’s UK to reconsider its approach and make it very clear that for many the condition is extremely disabling and extremely unpleasant as well as being mean, nasty and devious. It should make a start on this new approach by strongly advising those with the condition to try to avoid getting Covid, flu or other infections, to try not to fall, and generally to take care.

I admit I hadn’t appreciated how unpleasant it was until six months ago but I now know there should be much greater public awareness of its disabling effects. It is not easy to live with and there are heart-breaking accounts of living with its later stages on the charity’s forum.

Living with Parkinson’s can be a steep and rugged pathway just as living with any other unpleasant condition can be. Let us not pretend otherwise - it is after all living with life.

NOTE (1) I have no belief in any divine being but as a lapsed Methodist I still like my hymns. This is from “Father, hear the prayer we offer”.

(2)

Websites on the effect of Covid on PD

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9885419/ttp/

OR if this does not come up search Google for: links between Covid and Parkinson's

Websites on balance and PD

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4572660/