Parkinson’s UK

Leave a comment Posted on April 10, 2017April 10, 2017 Parkinson's Disease

Donna’s Story: Third Generation of Parkinson’s in the family and fears for her Daughter’s future

Parkinson’s UK We Won’t Wait Campaign: Donna’s story

To mark the beginning of Parkinson’s Awareness Week (10th-16th April) a new campaign has revealed a shocking lack of awareness surrounding the challenges those with Parkinson’s face trying to manage their condition.

The We Won’t Wait campaign has been launched today to highlight the urgent need to unlock the next step of research developments that could pave the way to better treatments for Parkinson’s. The main treatment hasn’t changed in 50 years, with no current medication available to slow down or stop the condition’s spread.

Our video features Donna, the third generation of women in her family to have Parkinson’s, with both her mother and grandmother diagnosed before her. Donna is committed to supporting research into the condition to find a cure, as she worries for her own daughter’s potential future diagnosis.

Donna is trying to avoid taking medication for as long as possible, as the side effects experienced by her mother were ‘devastating’ to see first-hand. They included hallucinations and forgetting who some of her closest family members were. Donna’s mother is now in a coma in hospital.

Donna was told in November 2016 by a private practice neurologist that she almost certainly has Parkinson’s. She is still awaiting a DAT scan via the NHS to confirm or deny her worst fears.

Parkinson’s affects almost every area of a person’s life with a range of physical and ‘hidden’ symptoms that include tremor, pain, sleep and mental health problems. Worryingly, there is a lack of public understanding of the day-to-day reality of living with the condition, with only a minority of people associating Parkinson’s with bladder or bowel problems (20%), anxiety (38%) and sleep problems, including insomnia and nightmares (32%).

The Parkinson’s UK ‘We Won’t Wait’ campaign aims to raise essential funds and awareness that will drive forward developments in Parkinson’s research and will hopefully help find more effective treatments that are desperately needed for the 127,000 people currently living with the condition.

Leave a comment Posted on April 24, 2015April 23, 2015 Parkinson's Disease, Patient Talk

Parkinson’s Awareness Week 2015 – New research show discrimination against people with Parkinson’s Disease.

Parkinson’s UK

As you may know this week is Parkinson’s Awareness Week. Parkinson’s affects 127,000 people in the UK. With 46% experiencing depression and 62% suffering from anxiety as a result of their condition according to British Charity Parkinson’s UK.

Parkinson’s disease is a neurological condition in which part of the brain becomes progressively damaged over many years. The main symptoms of Parkinson’s disease are:

tremor ( that is involuntary shaking of particular parts of the body
slow movement
stiff and inflexible muscles

So, of course, day to day life presents many challenges anyhow for somebody with Parkinson’s disease but Doctors suggest that insensitive public reactions could be impact on people with Parkinson’s mental health.

Professor David Burn, Parkinson’s UK Clinical Director and Consultant Neurologist, warned:

“It’s devastating to see the added burden thoughtless reactions from the public are having on people with Parkinson’s.

“Patients I see in the clinic are already battling a myriad of neurological symptoms including anxiety, depression and insomnia. The last thing they need is to feel like a zoo exhibit when they step out of their front door.

“It’s a situation where simple kindness and old-fashioned manners can actually have a life-changing impact on people with Parkinson’s. Understanding, patience and empathy can make the difference to someone with Parkinson’s as to whether they feel imprisoned in their own home, or confident to go out in public.”

Research suggested revealed the knock-on effects of public humiliation on people with Parkinson’s. Almost 1 in 5 (19%) who had experienced discrimination and negative reactions would rather skip a meal and go hungry than venture out to the shops, and 15% admitted they feel trapped inside their homes because of these reactions.

For previous coverage of Parkinson’s Awareness Week please have a look at this post here.

Leave a comment Posted on April 10, 2013 Patient Talk

Jane Asher President of Parkinson’s UK tells us about Parkinson’s Awareness Week and the latest research

Jane Asher

Parkinson’s: facing discrimination and prejudice – a Web TV show

Show date: 15^th April

Show time: 2pm

Every hour someone in the UK is told they have Parkinson’s, yet new research shows almost half of those with the condition face regular discrimination.

From verbal abuse, being mistaken for being drunk, to being ignored, hung up on and at worst arrested, a new study paints a bleak picture of the misunderstanding around Parkinson’s.

In light of this, charity Parkinson’s UK is launching a campaign to increase awareness of the condition following a new report which shows people with Parkinson’s are being unfairly and regularly discriminated against by institutions, work places, members of the public and even their own friends.

parkinson’s disease

The ‘Changing Attitudes’ campaign marks the start of Parkinson’s Awareness Week and the study makes for worrying reading, considering one in every 500 people has Parkinson’s and every hour someone is diagnosed.

So why are people with Parkinson’s facing so much discrimination in this day and age?

What is the ‘Changing Attitudes’ campaign and how can people support it?

Join our live webTV show where Steve Ford, CEO of Parkinson’s UK and Jane Asher, president of the charity will reveal the findings of the research. Also joining us is Mark Worsfold who has been on the receiving end of the most horrific discrimination when he attended the London Olympics last year.