View Full Version : What is it really like to have Parkinson's

15-Apr-13, 16:25
Support week starting today will aim to change public attitudes of discrimination etc.
NHS Highland is supporting this year’s Parkinson’s Awareness Week which will aim to change public attitudes to the condition by showing that many people with the condition face daily discrimination and hostility.
The idea behind the campaign, which came from a person with Parkinson’s, is to look at some of the realities of living with Parkinson’s and help the public to better understand the condition and what life is like for those with it.
Sharon Sutherland, Parkinson’s Nurse Specialist for NHS Highland, explained that with one person every hour in the UK diagnosed with Parkinson’s and an expected 28% rise in people diagnosed with the condition by 2020 she is keen for people to understand more about it and the effect it has on people.
She said: “Parkinson’s is a degenerative neurological condition, for which there currently is no cure. The main symptoms of the condition are tremor, slowness of movement and muscle stiffness – and these can get worse over time.
“Eating, getting dressed or using a phone or computer are simple everyday tasks which many of us do without thinking twice. For someone with Parkinson’s they can be difficult or frustrating.
“On top of the symptoms affecting movement they can also often experience problems such as tiredness, pain, depression and constipation. As it is a fluctuating condition symptoms can change day to day.”
Ms Sutherland explained that physical therapies such as physiotherapy, speech and language therapy and occupational therapy are all important when it comes to managing Parkinson’s.
Medication is the main treatment but these can also have side effects.
Parkinson’s Awareness Week 2013 will expose some of the realities of living with Parkinson’s and we hope to instigate a change of attitude by helping the public to understand the challenges of living with the condition.
Ms Sutherland said: “Can you imagine your body not doing what you told it to? To deal with people staring or tutting when you struggle to get out the right change at a supermarket till? Or how life would be if you were scared to leave the house for fear of freezing to the spot or losing balance and tripping over?
“People with Parkinson’s tell us that a general lack of public understanding can have a huge impact. Along with the stares and uncomfortable looks that they face when out in public, people with Parkinson’s have found themselves in some shocking situations because people don’t understand the condition.
“We regularly hear that people with Parkinson’s are mistaken for being drunk and refused taxis or bar service.”
A survey carried out last year by Parkinson’s UK found that found one in ten people would feel annoyed, embarrassed or uncomfortable if they encountered someone with a tremor – one of the main symptoms of Parkinson’s.
Ms Sutherland explained that by having a better understanding you will be more prepared when you meet someone with Parkinson’s.
She said: “By finding out basic information about what it’s like to live with the condition you’ll know more about it and what to expect.
“Simple gestures like avoiding staring or making judgements can go a long way, as can having patience if someone is taking their time in front of you in a supermarket queue.
“It’s important to understand that communicating for those affected can be difficult. Talking isn’t always easy but listen carefully, you’ll hear them and if they don’t smile it’s not that they are being unfriendly, they can’t move their face.
“Parkinson’s affects all kinds of people. Many are raising families, working or volunteering in spite of the obstacles they face. A little understanding would make life a lot easier.”
For more information about how to get involved, just go to parkinsons.org.uk/myshoe