Written many years ago to a person who had been diagnosed with Parkinsons, and was having trouble coming to terms with it. She wouldn’t discuss it with anyone, not her family nor with me - one of her closest friends, at the time.She didn’t take the medication prescribed for her first, and last meeting with a consultant neurologist.
i was very surprised at her attitude as she had been a sister in a local hospital,for at least twenty years. But, eventually, when she was feeling so bad, the time when she had to do something. She wrote to me asking what it was like to have the condition. I decided to tell her as honestly as I could, and I wrote a poem disguised as a letter.
I’m happy to say that some time after our poem reading, together: always the best way to read and enjoy a poem, In my opinion, she took her doctor’s advice and the medication prescribed for her.
, I hope the reader will enjoy my view of Parkinsons, and will excuse any flippancy that might be offensive to some.
Here we go, take a deep breath before you start!
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Parkinsons in a Nutshell- an epic poem Dear Bronwen, I’ve recently heard that you’ve been diagnosed with Parkinson's, I am so sorry. I’d like to meet up with you so we can chat; the main thing is that you don’t worry. I hope that this letter will help you to see, that although life will change, you will cope as long as you take the most positive view, never lose faith and don’t mope. To explain what it’s like to have Parkinson’s is not easy, I’m sure you’ll believe. Each day is a challenge to conquer the beast: which, often is hard to achieve. One day I feel almost as normal as when I was free of PD, then the next I’m fidgeting, writhing and stammering: a seemingly drunk lady. What first must be said and be understood is 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 are slowed, reactions take longer, that’s true. Life isn’t easy, nor as secure, but if I can cope, so will you!
I can’t easily plan to go out with a friend as I don’t know how long it will be before movement slows down and my strength disappears: this feeling is awful, believe me. One moment I look pretty normal, and can join in the action with ease, but the next I’m struck down, I’m unable to move as my body has gone into freeze!
I try to look good: I like to dress well, and when I am feeling A1, which isn’t that often, I’m sorry to say, I enjoy a good laugh and some fun. Friends often remark that I look very well, but they see just my outer display, for reality’s different: they don’t know the truth: I avoid them on a bad day!
I count myself lucky for I’m not half as bad as many who have this complaint. I don’t have the tremor, the incessant shaking; it’s enough to test even a saint! I’m able to do the most personal things myself, so I don’t feel the pain that many must feel if they need personal care: that must be a terrible strain.
The brain is the most precious part of our being, but faults in it sometimes appear. In Parks, the main reason is Dopamine shortage, what causes this loss is not clear, but without it the body refuses to move because muscles receive no commands, so tablets are taken to make up these losses: there are so many different brands. To be controlled by the drugs that we need is a bind and a major intrusion: you have to take care that you take the right dose or you’ll have problems found in profusion. It would be far worse if there were no relief, the alternative does not bear thinking. There would be no life, no freedom from pain; one’s world would be constantly shrinking.
You’d think that drugs taken at regular hours would work in predictable style. But often they don’t, and are slow to kick in, causing pain which removes every smile. It’s really a puzzle why some days my body is able to move without strain, yet the next it will either refuse to perform or refuse to keep still, yet again.
When working their best, the drugs bring relief, there’s a tranquil feeling of peace. When fading, I feel a significant slowing, a lack of response: movements cease. Rigidity may accompany this OFF, it’s a stiffness unpleasant to bear, waiting return of the next ON takes patience: when relief comes at last; peace is there!
But there are two sides to a coin, as you know; the drugs can have adverse effect: too large a dose may cause shaking and writhing, that you soon learn you have to accept as an awful experience that takes its own course: it cannot be stopped at one’s will. But when it recedes, a feeling sublime brings relief to the body, now still.
It’s not easy to cope, knowing that I have changed into someone who cannot control my mouth which now opens and spills out saliva, or my eyes that will up and down roll. To feel I should make no attempt to converse for in trying I speak as if drunk This makes it so hard to spend time with others and my life is like that of a monk! It’s humiliating to be so afflicted, to know that I often look 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’re quite young, full of energy; 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 the 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 and for forty long.years I’ve been changing from 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. I know that you’re worried about your condition, I urge you, have positive sights. Although 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!
With best wishes,
From your old school friend,
Val
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