In 1988, when she was 50 years old, my wife, Willy, was diagnosed with Parkinson’s disease. It began with a light tremor in her left arm; that is the motor symptoms began with a tremor. Her Parkinson’s had, in fact, started earlier with heavy depression, but we didn’t know that then. Our GP, thinking it was a symptom of her age and because our children had left home, prescribed some pills. But when the symptoms didn’t disappear, Willy was referred to a psychiatrist who saw immediately what was wrong and referred her on to a neurologist. (In Holland we have over 700 neurologists who take care of Parkinson’s patients, and not the GP’s as in the UK.)
For the next two years, Willy’s daily life was not affected too much despite an increasing tremor, on her right as well as her left side, and some bradykinesia. But then the stairs in our house became more and more difficult for her to manage, and we moved to an apartment with a beautiful garden where we have now lived for 18 years.
In the last 20 years we have experienced the gradual progression of Parkinson’s, which is a continual parting with functions and the acceptance of limitations. Willy was a professional sports instructor and eventually she had to stop playing tennis, riding a bike, driving a car and walking any more than 100 meters. She is now in a wheelchair permanently and has to have daily help with almost everything, including showering, getting dressed and going to the toilet. In the scale of Hoehn and Yahr, I would place her on the level four-and-a-half out of five (five being worst). She is no longer able to carry out any housekeeping tasks or the hobbies that she enjoyed and watching television (preferably sports) is the only thing that she can do.
Medication
Medication started with anticholinergics, a MAO-B inhibitor and dopamine agonists with Levodopa being prescribed later. In 2000 Willy had a Deep Brain Stimulation operation in the subthalamus nucleus reducing the medication she needed to take by almost three quarters. Pulse generators were replaced with new ones in 2006 and the medication remains at almost the same level as before the operation. For the last couple of months she has been taking ‘liquid levodopa’ which is Sinemet (levodopa with carbidopa) dissolved in water with the help of ascorbine acid (vitamin C) which she drinks using a straw. She also continues to take medication for her depression.
Symptoms
The medication that Willy takes controls the tremor and bradykinesia well, but these symptoms are not the real problems that Parkinson’s brings to a person’s life and that of the family. It is the central nervous system and the psychological effects that have such an enormous impact.
Communication is nearly impossible. Writing and reading have not been possible for a long time. Speaking is very difficult as Willy’s voice has become very soft and her articulation is almost gone. When I ask her to repeat what she has said, because I couldn’t hear her, she has forgotten what she wanted to tell me.
Cognition is decreasing rapidly and she cannot use domestic utensils such as a microwave, oven or a coffee machine as she can’t remember what the buttons are for. Another real problem is her incontinence, urine and faeces, making constant care necessary. But it is her falling that causes so much fear and anguish. Luckily she has not broken anything yet and her bones are in good condition, thanks to her sporting days; but should she break a hip I do wonder if she will be able to remain at home. These are not the typical motor symptoms of Parkinson’s; they are not important any more. Communication, incontinence, dementia, depression and falling are.
Future
The future is not pleasant to look forward to and we have known that for some time now. 20 years of Parkinson’s is in itself remarkable and we know that things will never get any better; we can only expect more sorrow and more care. Willy will in time need more professional care than I am able to give and she will have to be referred to a nursing home.
Post Scriptum
I have tried to explain what Parkinson’s means to us in our daily life. Our whole life is Parkinson’s; there is hardly any room for anything else. You may think that my observations are a bit clinical and you may be right but it is my way of coping without becoming too emotional. I try to handle this as a professional carer and sometimes I succeed.
See also EPDA Plus Issue 2 & EPDA Plus Issue 4
