The Derby Telegraph has recently highlighted the case of one of our members, Robin Mitchell, who has been judged fit to return to work in 18 months. This is despite the fact that Robin had to retire from his position as a data administrator in 2008 because of his Parkinson's. Something which his former boss says was entirely necessary.
Robin now faces being re-tested to make sure he can still receive Employment and Support Allowance (ESA), after already having been assessed in 2009 and 2010. In addition, he has now been told that his ESA will become income-related at the end of April 2012, which could mean he will only receive around half the amount he currently does.
This follows a recent article in the Daily Mirror, which shows that across the country 440 people with Parkinson's will have to undergo repeated assessments for ESA, as Robin has done.
The information came from a parliamentary question, asked by the Labour MP, Tom Greatrex, who has been championing the cause of one of his constituents who has Parkinson's.
We need an end to the revolving door of assessments that people with Parkinson's are subjected to. Instead, the government need to give people, like Robin, the support they need.
We are working to influence the benefits system to ensure that it takes into account the needs of people with a long term, fluctuating conditions such as Parkinson's.
Have you been assessed as fit for work, when you know your Parkinson's prevents you from doing so? Or do you care for someone with Parkinson's and work alongside?
Tell us your stories by emailing campaigns@parkinsons.org.uk.
Supporting Brain Awareness Week
We're proud to be supporting Brain Awareness Week - the global campaign to raise awareness of the progress and benefits of brain research - which starts today (12-18 March).
Your brain is amazing. It contains around 100 billion nerve cells which connect and talk to each other through 100 trillion synapses. This 3lb jelly-like mass inside your head is responsible for controlling almost everything you do - from walking and talking, to storing memories and creating our thoughts and feelings.
But in people with Parkinson's, the nerve cells that produce dopamine stop working and die. These nerve cells, found in the part of the brain that controls movement, are lost gradually, and it's only after about 70% of the nerve cells have died that the symptoms of Parkinson's begin to appear.
We don't know why this happens or crucially how to prevent it. But Parkinson's UK-funded research is leading the way to unravelling the secret world of the Parkinson's brain.
Every March, in Brain Awareness Week, hundreds of universities, charities and research organisations around the world join forces to celebrate the brain through events for people of all ages. And there are events happening up and down the UK this week including open days at neuroscience labs, exhibitions, lectures and workshops.
Our director of research and innovation, Dr Kieran Breen, will be speaking about the creative talents of people with Parkinson's at 'Arts for the brain' - at the Midlands Art Centre in Birmingham this Thursday, 15 March.
And don't forget that Parkinson's Awareness Week is also fast approaching (16-22 April) and we'll be holding events all around the UK and talking about our work to find a cure. We hope to see you there!
Your brain is amazing. It contains around 100 billion nerve cells which connect and talk to each other through 100 trillion synapses. This 3lb jelly-like mass inside your head is responsible for controlling almost everything you do - from walking and talking, to storing memories and creating our thoughts and feelings.
But in people with Parkinson's, the nerve cells that produce dopamine stop working and die. These nerve cells, found in the part of the brain that controls movement, are lost gradually, and it's only after about 70% of the nerve cells have died that the symptoms of Parkinson's begin to appear.
We don't know why this happens or crucially how to prevent it. But Parkinson's UK-funded research is leading the way to unravelling the secret world of the Parkinson's brain.
Every March, in Brain Awareness Week, hundreds of universities, charities and research organisations around the world join forces to celebrate the brain through events for people of all ages. And there are events happening up and down the UK this week including open days at neuroscience labs, exhibitions, lectures and workshops.
Our director of research and innovation, Dr Kieran Breen, will be speaking about the creative talents of people with Parkinson's at 'Arts for the brain' - at the Midlands Art Centre in Birmingham this Thursday, 15 March.
And don't forget that Parkinson's Awareness Week is also fast approaching (16-22 April) and we'll be holding events all around the UK and talking about our work to find a cure. We hope to see you there!
Parkinson's drug shortages: an update
You may have seen some recent news articles concerning shortages of Parkinson's drugs – Simemet and Azilect. We have been working to clarify the situation by contacting the manufacturers so we can reassure people who may be affected.
Many of you will remember the global shortage of Sinemet in 2010 and the fantastic support that so many people with Parkinson's and their families and carers gave to our campaign.
We have been monitoring the situation since then and have recently been made aware that some people have had problems getting hold of half Sinemet (62.5mg or 12.5/50mg).
We contacted MSD (who manufacture Sinemet) who confirmed there is no shortage but there is a back-log of orders, which may cause some disruption until June 2012. Pharmacists who are having trouble fulfilling orders of Sinemet should contact MSD customer services on 01992 462094.
Azilect was also mentioned as being one of the drugs in short supply. The manufacturer, Lundbeck/ Teva, has confirmed there is plenty of stock but it is held centrally in order to regulate the supply.
Pharmacists are rationed to a certain number packets at a time but this can be increased, if the number of prescriptions they receive increases.
Pharmacists who require more than this number need to contact their Alliance Healthcare Service Centre or Lundbeck customer services on 01908 462094.
We will be monitoring the supply of all Parkinson's drugs carefully over the coming months and will make sure we keep everyone updated. We are committed to making sure people with Parkinson’s have access to the medication they need.
If you've been affected by drug shortages, tell our campaigns team about your experiences on campaigns@parkinsons.org.uk or 020 7963 9349.
Many of you will remember the global shortage of Sinemet in 2010 and the fantastic support that so many people with Parkinson's and their families and carers gave to our campaign.
We have been monitoring the situation since then and have recently been made aware that some people have had problems getting hold of half Sinemet (62.5mg or 12.5/50mg).
We contacted MSD (who manufacture Sinemet) who confirmed there is no shortage but there is a back-log of orders, which may cause some disruption until June 2012. Pharmacists who are having trouble fulfilling orders of Sinemet should contact MSD customer services on 01992 462094.
Azilect was also mentioned as being one of the drugs in short supply. The manufacturer, Lundbeck/ Teva, has confirmed there is plenty of stock but it is held centrally in order to regulate the supply.
Pharmacists are rationed to a certain number packets at a time but this can be increased, if the number of prescriptions they receive increases.
Pharmacists who require more than this number need to contact their Alliance Healthcare Service Centre or Lundbeck customer services on 01908 462094.
We will be monitoring the supply of all Parkinson's drugs carefully over the coming months and will make sure we keep everyone updated. We are committed to making sure people with Parkinson’s have access to the medication they need.
If you've been affected by drug shortages, tell our campaigns team about your experiences on campaigns@parkinsons.org.uk or 020 7963 9349.
Parkinson's awakens hidden creative talents
Research published this week in the European Journal of Neurology has shed new light on the relationship between Parkinson's and creativity.
We hear from many people with Parkinson's who suddenly discover new creative hobbies after being diagnosed – including everything from drawing and creative writing, to sculpture and photography.
Our annual Mervyn Peake Awards celebrate the creative talents of people with Parkinson's and we receive hundreds of art, poetry and photography entries every year.
And the 'creative corner' on our forum is a popular place for people with Parkinson's to meet to share their poetry and stories.
The key to this new-found creativity may be a chemical messenger in the brain called dopamine.
People with Parkinson's don't have enough dopamine because nerve cells in their brain have died. And Parkinson's drugs, like levodopa and dopamine agonists, work by replacing or mimicking the action of dopamine. This helps to manage the movement symptoms of Parkinson's. But dopamine also plays other roles inside the brain, including creativity.
In this new research study, Italian researchers studied 36 people with Parkinson's - half had taken up new artistic hobbies since being diagnosed and the other half hadn't - and compared them to people without the condition.
The findings suggest that for some people, taking Parkinson's drugs can trigger the discovery of a new artistic interest but the 'ability' was probably there all along.
Have you discovered a new creative interest since being diagnosed with Parkinson's? Share your thoughts below or email us at pr@parkinsons.org.uk.
We hear from many people with Parkinson's who suddenly discover new creative hobbies after being diagnosed – including everything from drawing and creative writing, to sculpture and photography.
Our annual Mervyn Peake Awards celebrate the creative talents of people with Parkinson's and we receive hundreds of art, poetry and photography entries every year.
And the 'creative corner' on our forum is a popular place for people with Parkinson's to meet to share their poetry and stories.
The key to this new-found creativity may be a chemical messenger in the brain called dopamine.
People with Parkinson's don't have enough dopamine because nerve cells in their brain have died. And Parkinson's drugs, like levodopa and dopamine agonists, work by replacing or mimicking the action of dopamine. This helps to manage the movement symptoms of Parkinson's. But dopamine also plays other roles inside the brain, including creativity.
In this new research study, Italian researchers studied 36 people with Parkinson's - half had taken up new artistic hobbies since being diagnosed and the other half hadn't - and compared them to people without the condition.
The findings suggest that for some people, taking Parkinson's drugs can trigger the discovery of a new artistic interest but the 'ability' was probably there all along.
Have you discovered a new creative interest since being diagnosed with Parkinson's? Share your thoughts below or email us at pr@parkinsons.org.uk.
'In sickness and in health' Carers Week 2012 survey
The Carers Week survey for 2012 is out now. We need your help to make sure carers of people with Parkinson's are represented.Please complete the Carers Week survey by the end of March.
The theme of Carers Week is 'In sickness and in health' and it's taking place 18-24 June.
The results from this national survey will help highlight the impact of social care cuts on the 6 million unpaid carers across the UK, particularly on carers' health and wellbeing.
Carers of people with Parkinson's have been telling us how much tougher they've been finding their caring role recently because of cuts to services. But we need an accurate picture of caring in the UK.
If you need a paper copy of the survey please email rebecca.couper@carersuk.org or call Donna, our social policy and campaigns officer, on 020 7963 9307 . Don't forget to tell other carers about the survey too.
Carers Week is a UK-wide awareness week to help bring the public's attention on carers and the issues they face. Parkinson's UK is one of 7 national partners this year.
Recent research showed that unpaid carers save the Government £119billion pounds a year, yet receive little support themselves. We think carers need more support and the replies to the survey will help build further evidence to present to politicians. The survey results will be released in Carers Week.
Carers Week is also a great opportunity for our local groups to organise events for carers or join in with other events happening locally.
Register any Parkinson's events you're planning on the Carers Week website and they will send you the materials to help you plan and promote your event. Carers Week events across the UK will be listed on the Carers Week website nearer the time.
We know that time is precious when you're a carer. But please do take time to complete the Carers Week survey if you can, to make sure people affected by Parkinson's are represented.
If you'd like to tell us your experiences of being a carer, email us at campaigns@parkinsons.org.uk
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