On being ill

Zelda (right) with her sister Norma (left) and cousins Cynthia and Mona, in the garden of the residential care home where she spent the last 7 years of her life.

Pride comes before a fall. All my life I had taken pride in my good health. Until I was in my forties i had never had anything other than the usual childhood maladies. But then I began to have gynaecological problems. They were finally resolved by having a hysterectomy, from which I recovered quickly and easily and had not further health problems. I expected, therefore, to tay active and well to a very old age.
I had never been one to dwell on ill-health, and indeed felt little sympathy toward those who complained of aches and pains. I didn't find other people's illnesses easy to contend with. Then Parkinson's disease struck me and now I have more understanding of others' suffering.
Jerry died in October 1983 and by the end of that same year my hand started shaking in the familiar parkisons manner of pill-rolling. When I went to see the neurology consultant, the clinic was full of long-term sufferers, the sight of whom made me fearful of my own future. Many could only shuffle along with heads bowed down and expressionaless faces. Others were in wheelchairs with head and limbs shaking and writhing, mouths oen and dribbling. in one sense seeing the worst early on was to the good. It made me more determined to make the most of what active life I had left. It made me face up to reality with no false hopes.
At first I decided not to take the pills offered me because I realised the amount of time they could effectively help me was finite. The later I started on them the longer I could be helped, so I struggled on. It was not long, however, before I realised that I could not type well enough any more and that was essential for my work. My fingers became clenched and would not work properly. My handwriting got smaller and smaller and almost impossible to read. i gave in and took the pills. Their effect was almost miraculous. They did not help my handwriting but they did free my clenched fingers and to a certain degree controlled the shake. Unfortunately there were side effects, a feeling of queasiness, nightmares, and an odd but painful effect on my toes. I suffered badly with cramp and my big toe tended to shoot up stiffly.
I joined the Parkinsons Disease Society and was asked to start a local group for Islington and Hackney sufferers. With their help a venue was found and we got ourselves organised, having speakers on subjects related to our problems. But I found that such a group was more helpful to the carers than the sufferers, who were no longer able to benefit either from the information or the socialising. Confined to their wheelchairs, and with their senses impaired, they found little pleasure from others' company it seemed. For the women carers, however, it was a night out. We laid on transport for them and gave them light refreshments. They were able to shar experiences with the other carers and enjoy a chat quite happily. there was only one woman sufferer beside myslef, and she was cared for by her son.
As a new sufferer I could find little help from such a group and, in fact, it made me feel depressed, so I left it in the good hands of the society and soe of the carers. But that experience gave me an insight into the problems and needs of carers, which I put to good use o the Islington Carers Committee.
Partly to put myself more at ease and partly to make others more aware of the disease, I always inform an audience, if I am speaking in public, that I am a Parkinsons sufferer. Doing that has enabled people to come up and ask me questions or to tell me of some of their relatives who suffer from the disease. Some young women have even asked me to meet with their mothers who are sufferers and are very depressed. They hope that I can talk them out of it.
I have tried not to allow parkinsons to stop me from any activity. I walk and swim and try to remember to do some exercises each evening. When alone I do quite a lot of dancing to tapes I like, or to Top of the Pops. But I get very tired and very stiff after a lot of exertion. It can be quite painful and i have to admit I get a little depressed at times. I keep going as much as I can and on the whole it hasn't interfered too much with the way I like to live, but the future does worry me.
Recently I joined in the hospital's experiment with some different pills. Initially their control of the shake was remarkable and I was very happy despite the greater side effects of sickness, bad dreams, cramps and writhing. My friends had a good giggle when I told them what I dreamed - the nightmare was that I was in bed with a young lover and was just about to climax when the door was flung open and my two daughters appeared. My daughters tell me not to worry as they would approve not disapprove. When I asked what nightmares others had, I was told they usually dreamed of savage animals.
Now however, my body's response to that new drug is not as good as before. I realise i have to be grateful for small mercies, but it is hard to live with no real hope for a good future.
No hope? Well, people are always trying to comfort me with tales of new cures being found and alternative treatments that can help. The one thing that the doctors and consultants have made me understand is that they know very little about Parkinsons and that each sufferer is unique in syptoms and response to treatment. In general medicine is a hit and miss business, not an exact science. They do not even know the cause of Parkinsons, though they now think it may be environmental.
The pills they give me try to replace the natural dopamine lost to my body through certain brain cells dying. That controls some of the symptoms but does nothing to stop the disease's course. I am lucky in that my deterioration is slow. However, there is one treatment suggested for the terrible cramps I suffer which I can approve of. Quinine is the prescription but the doctor says that tonic water is the best form to take it in - and especially with a little Gin in it. Can't be bad.

[Comment from Sue - Zelda carried on coping with the disease into her late seventies but increasingly fell over, often injuring herself badly. The pills she took brought on hallucinations and her mental health began to suffer. She moved for a while to live with my sister Joan, and then with her friend Stan, but they both realised that the unequal struggle of caring for her, when she barely slept at night and could not tell hallucination from reality, was beyond them. With great regret, we found a residential care home for her in 2005 and she ended her days there.]