‘We Won’t Wait’ is the message from people with Parkinson’s as they call for new and better treatments for the condition.
It was 200 years ago that Dr James Parkinson first recognised the condition and documented his findings in An Essay on the Shaking Palsy.
Despite all those years of research, there is still no cure and the condition is barely managed by medical treatments.
The efforts of Dr Parkinson will be recognised today on World Parkinson’s Day, which marks his birthday. Organisations and individuals will unite to raise awareness of Parkinson’s and raise money for research.
The Worthing and district branch of Parkinson’s UK always joins in with the national Parkinson’s Awareness Week, which this year sees the launch of a new campaign to raise the profile of Parkinson’s and to accelerate the pace of research into new and better treatments for the condition, as well as raising funds for more research.
Rod Herod, a volunteer for Parkinson’s UK and a committee member for the Worthing group, said: “People with Parkinson’s need a breakthrough and everyone involved with the charity is uniting behind the theme, which is We Won’t Wait – it’s time for a new treatment.
“The search intensifies and in Worthing, the main activity takes place the week after PAW, due to Easter holidays.”
The group, which now includes a sub group in Washington, has 270 members, of which 90-plus regularly attend the monthly meetings.
Other activities includes two different levels of exercise classes, dance exercise, monthly lunch club, outings, speech therapy classes, art classes, outings and discussion sessions for people with Parkinson’s to share thoughts and experiences, plus coffee mornings for carers.
Rod said: “To provide for all these activities, we have a committee of ten people to organise fundraising events throughout the year and these include tin collections in local stores, sponsored walks and cycle rides, seasonal fayres, stamp collecting, race nights, etc.”
Volunteers will be manning information tables and collection points at Asda in Ferring and Haskins Roundstone Garden Centre from 10.30am to 4.30pm on Friday, April 21, and Saturday, April 22.
Rod said: “There will be people with Parkinson’s, carers and volunteer helpers at these points standing by to answer any questions that members of the public may have.
“We invite people to come and chat with us when they have done the shopping.”
There will also be an information point at Southlands Hospital, Shoreham on Monday, April 24.
About eight years ago, Rod was diagnosed with Parkinson’s after experiencing a persistent tremor in his left arm on exertion.
“The consultant neurologist made a speedy diagnosis - I had only just walked across the carpet in his consulting room when he told me I had Parkinson’s,” he said.
“Later, when I had recovered from the shock of this news, I looked up Parkinson’s on the internet.”
Parkinson’s is a progressive neurological condition affecting people who do not have enough of a chemical called dopamine in their system because specific nerve cells that produce this neuro transmitter deep in the brain have died.
Without dopamine, movement becomes slower, so it takes longer to perform simple tasks such as eating, getting dressed, using a phone or computer.
Every hour someone is told they have Parkinson’s. On average one person in every 500 has the condition, which is about 127,000 in the UK.
The main symptoms are tremor, muscle stiffness and slowness of movement. Other symptoms affect everyday life, including tiredness, pain, depression and constipation.
Parkinson’s does not directly cause death but symptoms worsen over time and there is no cure, so treatments are aimed at lessening the impact on everyday life.
Medication is the main treatment and the drugs work by restoring the level of dopamine in the brain, or mimicking its actions, but they do have side effects, such as abnormal involuntary movements and impulsive and compulsive behaviour.
Deep brain stimulation is another option, where electrodes are implanted deep into the specific area of the brain and are connected to a small battery located under the skin of the chest. The unit activates electric signals that stimulates the brain.
Physical therapies such as physiotherapy, speech and language therapy, and occupational therapy play an important role in the management of Parkinson’s.
The lead charitable organisation in the search for a cure and providing support is Parkinson’s UK. Since 1969, more than £80 million has been invested in groundbreaking research.
Parkinson’s UK also provides the organisational structure for support at a local level, so that no one ever has to face Parkinson’s alone.
For further information on the support available at a national level, phone the free confidential helpline 0808 800 0303 or visit www.parkinsons.org.uk
For information on activity in this area, telephone Margaret Stewart on 01903 779097.
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