Keeping up appearances?

By Meg Pinfield November 11, 2011

One of Ivan’s favourite TV programmes is ‘Keeping up Appearances’, with Patricia Routledge playing the awful Hyacinth Bucket (“pronounced bouquet”). He loves her ridiculous attempts to be correct in dress and behaviour for every occasion.

Perhaps his own upbringing has something to do with this; his mother had a posh dress shop, and used to be very cross if Ivan came home with torn or dirty clothes after being out playing.

He has always considered inward personal qualities more important than outward show. He never judges a sausage by its skin. When he was a senior catering manager, who needed to be smart at all hours of the day and evening, he relied on washable suits, drip-dry shirts, and a spare pair of polished shoes so that he could quickly change and smarten up if need be.

Gradually, with the onset of Parkinson’s disease (PD), he has simplified his wardrobe further. Nowadays he relies on jogging pants, polo shirts, baggy socks, and zip-up, slipper-like boots – whatever the occasion! This certainly helps me, and the other carers, when assisting him to dress and undress. It also means that he can retain some independence and take himself to the loo. [...] continue the story

Parkyman’s Story

By Parkyman

My own experience of Parkinson’s disease began at an early age. Maybe even at birth. My Grandfather had been on the Somme in 1916 and was caught in a massive shell blast. To cut a long story short, he was invalided out and sent home. He was diagnosed with a myriad of neurological disorders including, in 1925, Parkinson’s. It’s a sobering thought, that he received no dedicated treatment until the start of the NHS in 1948.

My Father, from the age of eight, along with my Grandmother, were on permanent “suicide watch”, and my father was often called out of school to run down to the local station and along the railway lines to take my Granddad home.  Now the problems we have had with my own Father and maybe even some of the wider problems in the Family, can, I believe be attributed to the trauma suffered by him during those awful days.

My earliest recollection of the disease, was when we had been on a visit to my Grandparents. I had got used to his shuffling gait and his mask of a face, but I whispered to my mum, “What`s wrong with Granddad , Mum?” and she whispered back, [...] continue the story

Breaking the code of silence

By Sheryl Jedlinski

Fear of where PD will lead us limits contact with people in advanced stages of the disease.

When diagnosed with Parkinson’s disease, I had many questions and fears but couldn’t bring myself to seek help from a support group or attend a patient education symposium. My need for answers was not nearly as great as my fear of seeing others in advanced disease stages and thinking how that could be me someday. I never imagined that I might also meet people who were doing well despite living with Parkinson’s for many years.

For a long time, I believed I was the only person with Parkinson’s who avoided those in advanced disease stages. I felt guilty about this and hoped others would not one day find me too scary to look at. These feelings are the white elephant in the room that no one acknowledges, though we all have them. Sharing our feelings and fears, and helping each other get past these is essential to weakening PD’s hold on us.

Over time, I developed a coping strategy that enabled me to attend symposiums. My husband and I would arrive late and sit in the back where all I could see were people’s [...] continue the story

Tom Shannon: The Painter and the Pendulum

TED visits Tom Shannon in his Manhattan studio for an intimate look at his science-inspired art. An eye-opening, personal conversation with John Hockenberry reveals how nature’s forces – and the onset of Parkinson’s tremors – interact in his life and craft. Tom Shannon’s mixed-material sculpture seems to levitate – often it actually does – thanks to powerful magnets and clever arrangements of suspension wire.

Curb Your Enthusiasm – Larry confronts Michael J. Fox (Season 8 Ep. 10)

Larry doesn’t believe that everything Michael J. Fox does is because of his Parkinson’s.