My dad has been suffering from Parkinson’s disease since he was 59 years old. He is now approaching his 76th birthday and has been living in his family home until now. This would not be possible without the total commitment of his full-time carer: his wife; my mum; the 24-hour unpaid home assistant, who takes no sick days, holidays or leave of absence. Ever.
Every day she cooks for him, helps him with his daily activities, counts and administers 16 tablets, brings him for a walk or to the local community centre, props him up comfortably, and often, in his armchair, reads to him and puts him to bed.
During the night he begins to hallucinate. In 2013 he was diagnosed with another condition, called Lewy body dementia. Sometimes he sees children in the trees outside their window, or sometimes people are at the front door and he needs to go down to them. Mum reassures him and puts him back to bed.
Each year hundreds of people in Ireland are diagnosed with Parkinson’s disease. Each person will present with different symptoms and will choose a different course of treatment individual to them.
My dad is treating his condition with a variety of medications, targeting the tremors, hallucinations and sleepless nights that bring their own side effects. His speech has slowed and become less coherent, his walking is now showing signs of the inevitable shuffle gait (his steps are shorter and quicker), and falls are more likely. His flexibility and range of joint movements are also diminishing. The deterioration of these motor functions are due to the loss of dopamine-producing brain cells.
He has tried other methods of relieving the symptoms, including spending intervals in a decompression chamber that belonged to a diving-instructor friend of his. These were actually very effective, as oxygenating the blood is enough to give most people a feel-good factor. But there is no cure for the disease. Improving the quality of life for the sufferer is what most people aim for.
Dad attends a physiotherapy session in the local community centre once a week, and enjoys the tea-and-sympathy afterwards more than he enjoys any of the activities. But this is really important to keep him active. Visits to the neurologist are biannual now, and the public health nurse is keeping an eye on what my parents need now, and in the future. My siblings and I try to fill in any of the remaining gaps.
The Parkinson’s Association of Ireland offers amazing support and information. And Dementia Ireland has helped us to understand the little things that we never knew – or, in my case, had forgotten – about dementia. This is the main reason we have kept Dad at home for so long: his long-term memory is so much better equipped to living in an environment that he recognises from the past. His limited short-term memory makes daily tasks difficult, and our goal is to ensure he gets confused as little as possible.
Muhammad Ali and Michael J Fox are both known for having the disease, and both were diagnosed at a relatively early age. Robin Williams was also in the early stages of Parkinson’s before his death.
The fine-tuning of stem cell science is likely to come way too late for my dad, but it does offer hope to sufferers in the not-too-distant future. The use of cannabis to treat Parkinson’s is now legal in some states in the US, although much more research is needed to prove its effectiveness. It is unlikely that this treatment will be available during my dad’s lifetime.
For now we are happy that he is still in his own home with the love and support of his wife and family and the community around him. And we hope he is happy and feels our love.
World Parkinson's Day is on April 11th. See parkinsons.ie
