In The Spotlight
Parkinson’s population is diverse and includes those from all walks of life; this increasingly visible group must be understood, accepted and supported.
“PD is a slow but inevitable process. It’s hard living with PD on a daily basis. The difficulty facing people with it is that they never quite know ‘Can I or can’t I do this today?’ That’s what makes normal, everyday life more and more difficult, because, for example, you can drive perfectly well for five minutes and then suddenly not be able to do something you thought you could do.”
Steve Ford Executive Director of PD of UK…”I am delighted Helen Mirren is showing her support for our Fair Care for Parkinson’s campaign and understands the need to change attitudes to Parkinson’s – among the public, healthcare professionals and in government. So often people’s symptoms are misunderstood and people are treated without respect.”
December 21, 2015…Legendary singer Linda Ronstadt made a rare public appearance in the South Bay Area.
3 years have passed since Ronstadt went public with her Parkinson’s diagnosis. Monday night, she gave an update on how she’s dealing with the disease to a sold out crowd at the California Theater in San Jose.
” Thank you for showing up to hear me talk instead of sing — I never know if you are going to show up to hear me speak,” said Ronstadt. “I can’t sing anymore. That’s that. I can still sing in my brain but I can’t sing. It’s just the way it is. If you’re going to have Parkinson’s you better have a sense of humor. Because somebody wants to surprise you with Mr. Toad’s wild ride — you wake up in the morning and you have this collection of symptoms, you don’t know what’s going to show up.”
Steve Ford continues…”We are delighted to welcome our newest celebrity supporter to the Parkinson’s UK fold – actor Michael Fox.
He’s played the role of footman Andrew Parker in Downton Abbey for the last two seasons. His other films include Marvellous with Toby Jones and Good People with Kate Hudson and Anna Friel.
Michael’s supporting us because his maternal aunt was diagnosed with Parkinson’s in her 40s.
It’s a cause that’s very close to my heart. I’ve seen first-hand how Parkinson’s can affect the whole family, not just the person living with the condition.
“I became interested in the work of the charity after speaking to Laura ‘Lady Edith’ Carmichael while we were filming Downton.
Laura Carmichael of Downton Abbey
“Laura’s grandmother also had Parkinson’s, and Laura’s been a supporter for some time.
“I attended the annual research lecture last month, which was eye opening. It was fascinating to hear about the groundbreaking research Parkinson’s UK is funding and how it’s changing lives for people with Parkinson’s.
“I’m looking forward to working with the charity to bring forward the day when no-one fears Parkinson’s.”
We are particularly delighted to now have both Downton Abbey upstairs and downstairs represented in our VIP ‘team’.
Laura’s grandparents lived through the Second World War but she says: “I really thought about Nanna a lot during the First World War Land Army storyline. Both my grandmothers had a whale of a time during the second war. Nanna was in the Land Army and then became a Wren, she had a fantastic experience.”
As a member of the Women’s Royal Naval Service her grandmother Mary travelled the world and met the man who would become Laura’s grandfather.
“After the war she carried on working with ships in various different jobs and then in a department store,” Laura says. “Wartime opened up so many opportunities for women.”
Her grandmother was a big part of Laura’s life as she grew up. She lived near the family home in Southampton and would often look after Laura and her siblings Amy and Olivia while their mother Sarah worked as an NHS radiographer.
Laura was in her teens and still dreaming of drama school when her grandmother was diagnosed with Parkinson’s disease. Over the next seven years the fiercely independent woman who had always been so full of fun began to slip away, and Mary became more dependent on those around her.
Parkinson’s disease is a progressive neurological condition that affects about one in 500 people. Nerve cells in the brain die and this depletes levels of the chemical messenger dopamine. This leads to muscle stiffness, tremors or slowed movement. Symptoms get steadily worse until old age or another health problem such as an infection intervenes.
Mary was 85 when she died.
Laura recalls: “Initially the changes were quite subtle, I think that’s often the case. Nanna had a friend who also had Parkinson’s and she noticed that her handwriting was becoming similar to her friend’s. That’s how she became aware of it.
“She lived on her own after being widowed and was incredibly active. She would go into schools to hear children read and volunteered for charities and I think she was very nervous of losing that freedom.”
Laura says: “Nanna passed away when I was 22, and her Parkinson’s was a big part of our lives as a family. It is very unifying when something like that happens to a family. You bond through it.”
Indeed it is still a large part of the family’s life. Since then, Laura’s mother Sarah, 53, has raised more than £6,000 for Parkinson’s UK by walking the Inca Trail. The charity supports families living with Parkinson’s by training specialist nurses but it is also looking forward to a time when there might be a cure for the condition.
The first trial to test a promising growth factor which may help regenerate brain cells has just begun and scientists at Cambridge University recently discovered the tipping point where a protein in the brain becomes toxic and triggers Parkinson’s.
Lead author of the study Dr Celine Galvagnion says: “Finding a cure for Parkinson’s depends on our ability to understand it. This provides us with a likely explanation of how the initial steps lead to Parkinson’s.