One of the most difficult symptoms of Parkinson’s disease as it affects me (everyone is different) is the sudden periods of violent, uncontrolled movements that can occur. These are tiring and become painful. They prevent you doing anything. They disturb your balance and you have to be careful not to fall. They are socially embarrassing and though I have to say people are very kind and tolerant, if these happen in, say, a lecture hall, I get very stressed at being a source of distraction and irritation to everyone, which only makes the problem worse. It can last for 10 minutes or several hours and I never have any idea why it ceases.

Since these bouts do not invariably occur, it would be useful to discover what caused them in order to avoid them or minimise their effect. No-one has been able to shed any light on this or suggest any preventative measures. Some people feel it is a nervous reaction and suggest tranquilisers, but I do not feel that I am invariably nervous when it occurs (though stress will obviously make anything worse.) It appears to be more likely in the evening when one is tired. Being in a noisy environment can set it off. And it appears to have some connection with food. Too long a gap between meals, eating meals that are too large or rich, not eating enough in the day – these can all be triggers. Drinking some of a glass of wine before eating food causes an almost immediate bad reaction. It’s a complex business.

Over the last few days I’ve been following recipes from Hugh Fearnley Whittingstall’s new cook book, Light and Easy (£25, but on sale at W H Smith’s for £6). He’s avoiding sugar and dairy produce. I noticed that my twitching phase, while still present, was much shorter. Then the other day Anne came at fairly short notice for lunch, and I made Eve’s Pudding to liven up an otherwise dull meal. Two tablespoonsful of sugar went into the apples, and four ounces into the sponge topping. Over the day I had two large helpings,so I estimate I consumed about 2 oz of extra sugar. Twitching was much worse than on the previous days.

Could it be that it is sugar that causes this reaction to worsen? Although I confess I do like cake and sweet things, to be free of these periods of excessive mobility, or even to reduce their time length would be sufficient of an incentive to cut back drastically. I think I’ll follow Hugh F-W’s book for a few months, because even if there is no improvement with this particular problem, I think the diet would be a good one. I find if you stop eating sugar, you don’t want it so much.

Life is still sweet but maybe it shouldn’t be sugary!



I’m a bit behind this week because I’ve been feeling a bit below par, as I have recently altered my medication needed to ease the symptoms of my PD.    From time to time the timing or dosage needs adjusting, and I always find these transitions difficult.   I’m not sure how much of this is mind or matter.

In the first place, I don’t want to be taking any drugs.   I’d much rather be an organic, let-nature-take-its-course kind of person.

I was fortunate that during the birth of my three children, I did not require pain relief; but in that case the pain is of short duration, and you can endure practically anything if you know it will come to an end.   (And no discredit whatsoever to women who do accept pain relief – why ever shouldn’t they, if it helps them.)      But for years I suffered from migraine, (thankfully, no longer) and I certainly needed pain killers for that.   Still, that’s a one-off kind of thing, although I think if I had seen a year’s supply of what I took I’d have been quite horrified.    So one has to balance a desire for a natural life with the need to maintain a quality of life.     One would not wish to return to an age when drugs were not available.

In any event, I have not proved able to deal with this condition without the aid of some drugs.   I am grateful for the improvements they make to my life, and appreciate the expertise and study which has gone into producing them.  (Experts not Always wrong, after all!)    I am also grateful to the NHS for bearing the cost.

However, I’m always very reluctant to commit to a change, and in the end John has to persuade me that it will be beneficial.   I think his level of difficulty in doing this could be compared to that of trying to coax a flighty horse to enter a slowly moving train.    But in the end we consult, expert opinion advises us, and the new packet for trial is in my hands.

Big dilemma.   Should I read the ‘Possible Side Effects’ or not?    I do realise that the drug companies must list the known side effects, but by the time I’ve read to the end of them, I’m practically suicidal.   It’s no good John pointing out, only a little wearily, that the incidence of some of these peculiar results is one in ten thousand.   My logical self knows this is true, but my emotional self has retreated, sobbing, to under the stairs.

So, I take the drugs, much as Socrates might have lifted the hemlock cup, and am surprised to find, a few days later that my head has not fallen off, my ears have not turned green, and no demons have appeared at the foot of my bed.    I peer at myself in the mirror half expecting to see someone else there, but no, it still appears to be me.   Meanwhile, all the things that you might expect to happen are taking place (much as my advisor suggested) – feeling  a bit fragile, nausea, fatigue, disturbance of symptoms, etc.    Interspersed among these minor difficulties are bouts of panic, wondering if head is securely on shoulders, whether there might be a hint of eau-de-nil about my ears, and if demons ever actually put in an appearance at the foot of beds.

I think the drug companies should say:

There are a number of side effects which have been recorded from a few people who have taken this medication.   However, none of these will affect you.   Should you notice anything untoward, please inform your doctor.

Mind you, if I read that, I’d think – ‘The side effects are so terrible they’re afraid to list them’, and then I’d never take them at all.

In the meantime, I think I’m feeling a bit better.    I’ll just go and look in the mirror at my ears….



A recent bout of toothache both before and after dental treatment made me reflect on the characteristics of pain.

Firstly it is not easy to define – although everyone has experienced it.   I do not quite agree with Dr Johnson, who said, ‘Those who do not feel pain seldom believe that it is felt.’     Generally, the difficulty is not in recognising that an individual is in pain, but rather in assessing what kind of pain and to what degree they are suffering.    There is no way of telling whether someone bawling and screaming is in greater pain than someone hunched and silent.   There are some physical signs – pallor, sweating – but these are not the inevitable or the only companions to pain.

There are different kinds of pain.    There is the intense blue white pain when you stub your toe badly, or are hit by some object – but mercifully this is generally short lived.   There is the persistent dull red pain of a long term injury or sprain.   There is droning lasting pain, and short sharp stabbing pain.     But when a  medic asks you to rate your pain 1 – 10, he has no way of telling whether your 3 would be another person’s 6.    Pain is a solitary experience.   There’s no question of us all being in it together and George Osborne suffering too.    (More’s the pity.)     With pain, you’re all on your own in the darkness.     Actually, I’ve always found, notwithstanding the care and kindness of husband, family and friends, a great comfort came from the family pets who seem to have an instinctive empathetic awareness of one’s distress, just as they themselves are touchingly grateful for your care of them in their illnesses.

Some pain encompasses one’s life like a tight ring.    If every breath pains you, then you can’t see beyond your next breath.

Emily Dickinson put it rather elegantly:

Pain has an element of blank;

It cannot recollect

When it began, or if there were

A day when it was not.

It has no future but itself,

Its infinite realms contain

Its past, enlightened to perceive

New periods of pain.

Gripped by pain, you can’t think; you can’t talk; you can’t decide on anything.   You just want to lie there and not move so as to escape the pain.

When I broke my hip, in the immediate aftermath I experienced bouts of pain, accompanied by violent shaking, interspersed with short periods when there was a brief respite from this.   Since I have had Parkinson’s Disease for over 14 years, and shaking can be part of the condition, I assumed this was connected with my illness, but have since learned it is a perfectly normal reaction to shock.

I have experience of two other types of pain – that associated with childbirth, and of migraine.

The pain of childbirth is always mitigated by the hope that it will have a positive outcome – the birth of a live and healthy child.   Everyone has a unique experience of course, but in my view the fact that there is a pattern to labour pain makes it easier to endure.    Contrary to those old films where the lovely heroine clutches her belly in sudden collapsing agony, in my experience the first pain is so mild and passes so swiftly you doubt if it was really present.    But very slowly the contractions build up and speed up until the pain is like a band tightening round your belly and clutching at your throat.   But I found that when I got to the stage that I’ve thought, I really can’t stand much more than this without drugs; suddenly you were in the final pushing stage which is not painful, just hard.

My other experience is of the pain of migraine and that too had a pattern.   I suffered these from my teenage years to my early fifties.   They commenced with a feeling of well being and euphoria.   If ever I thought, I feel wonderful, I would think, Oh no!   I have always had acute hearing, but in the day or so before a migraine this would become so incredibly enhanced it was an affliction.   I could hear the conversation in the office in the floor above me.   In a large restaurant, if I concentrated hard, I could listen in to any conversation in the room.   (For this reason it is prudent to be guarded in what you say.   Persons with normal hearing have absolutely no idea what some people can hear.)   This became an unbearable overload of ‘input’ and then the pain would begin, very slowly as a dull ache behind one eye.   Once the process was underway, there was no stopping it.   Painkillers would perhaps take the edge off it, but it had its own inexorable progress.   Pain would build up gradually over 2 days rising to a crescendo when one had to retire to a darkened room and lie as still as possible.   Sometimes one would vomit at the peak, and crawling to a lavatory and being sick while having a headache of such intensity was not an experience to be undertaken lightly.    Then the pain would slowly diminish over two days.   Finally for a day or so one didn’t ‘have’ the headache but it hovered above one’s head and one felt very fragile.  At last it would depart and one would be pain free for some weeks.   The whole migraine lasted for about a week, and painkillers enabled you to function, more or less, apart from the period of high intensity where you absolutely could not function, but that lasted for  about 4 hours at most.

At the present time I have lower back pain, probably at least in part related to the drugs I take to help with my PD.   I walk through a wall of pain every morning, which is sometimes quite an effort to contemplate before tackling.    The pain is never entirely absent, but it eases somewhat through the day.    It would be easy to succumb to depression about this, but fortunately I have an optimistic disposition (and in truth much of the time it is well within what is tolerable.)

I absolutely hate consulting anyone, or having people near me or looking at me.  I can remember as a child of under school age going into a violent paroxysm of rage because my mother had been so bold as to consult a doctor without prior discussion with me, and her understandable astonishment at this reaction.   Of course this instinct just to crawl off to a dark place and endure until it gets better is not always the wisest policy nor is one’s judgement necessarily at its best at such a time.  But eventually either it gets better or the pain (or your companion) forces you to seek help.   Everyone’s reactions are quite different.   My GP told me that some patients turned up in his surgery every time they sneezed, but he obviously also thought waiting until one was (possibly) at death’s door was hardly sensible either.   Never the less, even though I only consult them under duress, I am very grateful to the medical team that supports me for without their advice and care my life would be much less full and satsifying.    Also they put up with my foibles and eccentricities with tolerance and good humour!

Of course an emotional pain, though not perhaps initially physical, is no less distressing.   We have all stood smiling in our place, have we not, while some deadly blow has struck at our heart?   Your lover has been unfaithful;  someone you cherished has died;  your friend has betrayed you.    You may give no external expression to your hurt, yet within you feel mortally wounded; bleeding internally;  about to die.   You won’t of course (not yet.)   You’ll live and suffer.    I find at these moments thinking and feeling functions split; and the Thinker, still coolly functioning, says to the Feeler, who is collapsing in slow motion:  “We can’t deal with this now.   Hold it together until I can get us to a safe place.”   That moment is like standing alone on the  sands, watching a giant tsunami approaching and realising it’s too late to run.

Never the less there are some positive aspects to pain.   It draws our attention to a problem which left unattended might prove fatal.    There’s the blessed relief, the wonderful reprieve, when it stops.   And it’s undeniably true that we learn more in pain and adversity.   For one thing, you learn of the kindness and generosity of others, and the charity of receiving.

As someone who (within the bounds of being mostly of normal health) has endured quite a lot of pain, I wonder if having a type of constitution or personality that is sensitive to experiences, can intuit as it were quite delicate things – whether that general delicacy of sensation  or fine calibration to matters not always easily discerned – whether that goes with a tendency to experience pain?     For me, not having that sensitivity to movements and subtleties around me would be like stumbling through the word blind and deaf.    I would not relinquish the tendency to pain (though I will do everything sensible to alleviate it) for a more robust but less reactive  personality.    You have to take the rough with the smooth.      I’ve had more than my entitlement to smooth so all in all, I have no complaints.    My feebleness of flesh may be a poor thing, but it is my own.

If we had no pain or bad times, how would we know the good times when they came, or be able to truly appreciate the days of well being and rejoicing?   However, if anyone has any suggestions to help with my back pain, I’m listening!