Utter bewilderment after being diagnosed with early onset Parkinson’s led Ann Andrews to write a book to help others with the disease.
Ann Andrews recalls the day she was told she had Parkinson’s disease by a somewhat abrupt neurologist, was sent home with a booklet and a drug prescription, and felt utterly bewildered. “You think, ‘What does this mean? Does it mean I’m going to be paralysed? Is this serious or not?’ “Most people I know with Parkinson’s have mixed feelings about the day they were diagnosed. Some burst into tears. Others just went home and wondered what they were supposed to do.”
Andrews, a petite, striking-looking and immaculately groomed woman, had an eclectic career behind her (teaching deaf children, counselling, working as a television and theatre producer) when she was diagnosed with Parkinson’s 12 years ago. Aged 59, she qualified for the category of “early onset Parkinson’s”, yet most of the reading material was aimed at the caregivers of elderly people with an advanced stage of the disease. “It was all about special spoons, or special sipping cups and walking aids,” she recalls. “I found it all quite chilling … it all implied that you were virtually out of it already.”
This is partly what prompted her to write her book, Positively Parkinson’s, aimed at those with the disease who still have some control over their body, brain and lives and would like to maintain as much of that as possible. It’s a slender but information-packed book – what you want to know about the disease, the drugs, the recent research.
It includes personal and moving accounts from those diagnosed with Parkinson’s while relatively young. It is filled with sensible advice on its impact on work and relationships, and includes all sorts of suggestions for the small things that can make life more tolerable: how to look after your feet and teeth, yoga exercises for curling toes, why you should try to smile on the inside, even if your facial muscles won’t follow. It is informed by personal, and often grim, experience. There is nothing rose-tinted or prescriptive about it.
Parkinson’s is a degenerative disorder of the central nervous system, resulting from the death of dopamine-containing cells in the substantia nigra, part of the mid-brain that controls movement. Readers may be familiar with the tremor, the most well-known sign of the disorder, but those suffering from it often struggle to move much at all – their limbs, facial muscles, eyelids, vocal cords.
“Parkinson’s reduces you,” says Andrews. “Not just in your brain and in your feelings about yourself. It reduces you in every way. Your steps become smaller, your movements become smaller, even your voice becomes smaller.”
Still, you might as well make the best of things, which is the unsentimental approach Andrews takes in her book. And one of the best things she did soon after diagnosis was a course in speech therapy, as people with Parkinson’s often find they don’t have normal control over the muscles of their larynx, vocal cords and lungs. Andrews remembers her voice changing before she was diagnosed. “I’d be at a dinner party and I’d go to say something and my voice would come out and like this …” – she fakes a soft and highly pitched voice – “and I’d be so embarrassed. It was as if somebody else had taken over my voice box.”
Andrews was fortunate enough to be able to do a Lee Silverman Voice Treatment (LSVT) programme, designed specifically for people with Parkinson’s, which taught her how to speak more loudly than she thought she was speaking. She continues to practise the vocal exercises every day, usually in the shower or the car. “You have to think you’re an opera singer.” She couldn’t be more grateful to the speech therapist. “I think I owe my voice to her.”
Of course, not everyone with Parkinson’s will find a therapist trained in LSVT living nearby, but as Andrews points out in the book, it is always worth asking. “I’ve tried to cover a whole spectrum of the things that I have found out about, because that’s the hard part for a lot of people. Knowing what is available. But you have to ask. If you don’t ask, you won’t get that sort of help.”
Positively Parkinson’s will also be useful for those who know people with Parkinson’s. A word of advice: don’t tell people with Parkinson’s about the cure apparently just around the corner. Most likely they will have read all about it, and besides, it probably isn’t just around the corner. “I’m practical and realistic,” says Andrews, “but not always optimistic.”
POSITIVELY PARKINSON'S by Ann Andrews (Calico Publishing, $35) available now. Email Calico Publishing at firstname.lastname@example.org.