Most Parkinson's patients know their illness won't improve

A generation of people with Parkinson’s in Scotland face an uncertain future knowing that their condition will never improve.

That’s unless urgent action is taken to take advantage of research developments that could lead to better treatments and stopping Parkinson’s drugs falling behind.

The stark warning comes from Parkinson’s UK, as the charity marks Parkinson’s Awareness Week by launching its first public appeal to raise funds on the 200th anniversary of the condition first being recognised.

The main drug people with Parkinson’s rely on – levodopa – hasn’t changed since the 1960s. While some new drugs have been developed, no current medication is able to slow down or stop the spread of the condition, leaving those affected with severely limited treatment options.

The demand for action comes as the charity reveals a widespread lack of awareness of the challenges people with Parkinson’s face in trying to manage their condition. The absence of effective medication means there is nothing to stop its progression and the worsening of symptoms that can make many every-day tasks impossible.

Parkinson’s UK’s ‘We Won’t Wait’ fundraising campaign will raise essential funds that will drive forward crucial developments in Parkinson’s research to pioneer more effective treatments that are desperately needed for the 11,000 people in Scotland currently living with the condition.

Living a full life with Parkinson's

Barry Moran lives in Glenachulish in the Highlands with his wife and young sons. Despite being diagnosed with Parkinson’s at the age of 39 in 2014 he has continued to work as a chef offshore on the rigs. Barry cooks for 150 workers during his 12-hour shifts.

Barry says: “My medication does make a difference but doesn’t completely stop my tremor, stiffness and back pain. More worrying is the effect my Parkinson’s is having on my ability to think as clearly as I used to be able to. I’ve run half marathons and the like in the past and I’m going to keep on doing that as there’s no doubt exercise makes a huge difference to my ability to deal with the condition. But I do notice that my right leg and foot feel heavy, numb and weak at times and that makes running difficult.

“My work is demanding but my employers have been terrifically supportive and understanding. They recognise that my Parkinson’s means I have good days and bad days. My biggest fear is that the symptoms progress to the point where my mobility becomes limited and I’m a burden to my family. Better treatments are one thing but what we really need is a cure for this frightening condition.”

Parkinson’s affects almost every area of a person’s life with a range of physical and ‘hidden’ symptoms including tremor, pain, sleep and mental health problems. The research highlights the 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 (17%); anxiety (40%); sleep problems, including insomnia and nightmares (30%).

Commenting on the launch of the charity’s first public fundraising campaign, Katherine Crawford, Scotland Director of Parkinson’s UK said: “200 years after the condition was first identified, people with Parkinson’s in Scotland are still waiting for an effective treatment that tackles the condition head on.

“It’s been more than fifty years since the last major drug breakthrough but Parkinson’s can still leave people struggling to do the simple things that most of us take for granted. That’s just not good enough for the 11,000 people in Scotland with the condition, so today we say we won’t wait any longer. That’s why Parkinson’s UK is harnessing the expertise of the research community and the support of those living with Parkinson’s to spearhead a new drive to deliver better treatments and a cure faster.

“But we can’t do this alone. That’s why we’re urgently asking people to donate whatever they can to support our vital research. We won’t stand by and let Parkinson’s treatments fall further behind.”