Updated: Sep 26
This epic poem was written by me many years ago, for a friend who was in denial:
she simply couldn’t come to terms with her diagnosis. One day she asked me to tell her what it feels like to have Parkinson’s. The following poem tells of how Parkinson’s was displaying itself in me at that time. It is not like that, now. It has changed enormously. You will need a good 5 minutes to read it, so take a deep breath!
It’s not easy to say what it’s like to have Parkinson’s, I’m sure you’ll believe. Each day is a challenge to conquer the beast And that’s something that’s hard to achieve. One day I feel almost as normal As when I was free of PD, The next I’m stammering and stuttering, A seemingly drunk lady. What first must be said and understood Is that my mind is not sullied at all. It has its ability, the same as before PD’s clutches did my life enthral. My body has changed, responses have slowed, Reactions take longer to make, Life isn’t as easy, it’s not as secure, One needs loved ones from whom strength to take. I can’t easily plan to go out with a friend As I don’t know how long I’ll have strength To be mobile, able to walk and to talk, or feel free to converse at length. One moment I look pretty normal And can join in the action with verve. But the next I’m struck down, my strength seeps away: This really destroys my nerve. I’m really quite lucky, I’m not half as bad As many who have this complaint. I’ve not got the tremor, that incessant shaking Which is enough to tease even a saint. I’m able to do the most personal things without help, so I don’t feel the pain That many must feel when they have to be cared for By others: that must be a terrible strain. The brain is the most precious part of our being Yet faults in it sometimes appear. In Parks the reason is Dopamine shortage, What causes this isn’t clear, Without it the body refuses to move Because muscles receive no commands So the brain is supplied with a dose artificial That proceed to appropriate glands. To be so controlled by the drugs is a bind And, quite simply - a major intrusion, Each day’s medication is timed with great care Solving problems found in profusion . It would be far worse if there were no relief, The alternative does not bear thinking. There’d be no real life, no freedom from pain and ones world would be constantly shrinking. You’d think that drugs taken at regular hours Would work in predictable style. Often they don’t and are slow to kick in Causing pain that removes every smile. It’s really a puzzle why sometimes my body Is able to move without strain, While the next it will either refuse to move Or refuse to keep still, yet again. When working their best the drugs give relief, A calmness and feelings of peace. When fading, my body begins to slow down, Drugs fail and all movements will cease. Rigidity may accompany this OFF, It’s a stiffness unpleasant to bear. Awaiting the return of an ON takes patience, When relief comes at last, Peace is there. But there are two sides to a coin. You may know That drugs can have harmful effects Too many drugs cause my body to writhe: I.can only stay calm and expect This awful experience to take its own course It cannot be stopped at one’s will. But when it recedes, the feeling is such a relief when my body is still. Coping’s not easy, with so many symptoms I don’t have a chance to control! My mouth which will open and spit out saliva, And my eyes that will up and down roll. To know that I can’t talk to people I meet, For words uttered will make me sound drunk This results in me not going out very often, Instead living the life of a monk. It’s humiliating to be so afflicted, Knowing often I look very strange. It’s shameful to feel that the person I was is unable a greeting to exchange. It’s hard to accept that as yet there’s no cure, yet keep hope that in time there may be. It’s not easy to realise there will come a time when I’ll lose independency. Most people with Parks have progressed in years, their employment has ceased: they’ve retired. But many are diagnosed while they are young, full of energy and still live-wired. They have families, mortgages, debts to repay, they need to have jobs to earn cash. For some, work is possible, helped by the drugs, but for many, work ends with a crash! Important to people with Parkinson’s are their carers, who willingly give so much of their time to help and support, making life so much easier to live. The carers’ devotion and patience is vital but they soon are worn out by the strain. They willingly lose their freedom for others: giving all, with nothing to gain. I’m now over eighty: for forty one years I’ve been forced to change, day by day. There’s no point in fighting, denying or hiding: it certainly won’t go away. Have faith in your doctor, and follow advice from your Parkinson’s Specialist Nurse. Try to be positive, meet up with others who share this atrocious curse. To any who are worried about this condition I urge you, have positive sights. Your life will change and you’ll have to adapt, seek help and secure all your rights. I am not an expert, I speak from the heart, I’m one who’s been frightened and sad. I’ve learned Fate’s not changed by self-pity and dread: count the good things in life, not the bad Val Bowden