News - September 2019


Recent Newsletters can be found at our 2020 newsletters web page 

MAN BELIEVES PLAYING PIANO SLOWS EFFECTS OF PARKINSONS – Edited from ClassicFM.Com August 2019  
Derick Davies, 74, was diagnosed with the progressive neurological disorder in 2008 and experienced tremors for a number of years. But since teaching himself to play the piano, the disease progressed at a slower pace than doctors expected.

“I took it up because I need to help my coordination,” Davies says. “As you can see, I have got a tremor. When I play the piano, it gets better. This is with practice, of course! When I touch the keys, it goes quite magically, really. But it’s very, very hard work. It’s the hardest thing I’ve ever done in my life. But it’s been worth it.”

Can music help people with Parkinson’s?  
Parkinson’s is thought to be linked to a chemical called dopamine, which is lacking in the brains of people living with the disorder. On its website, Parkinson’s UK, although it recognises “there isn’t a one-size-fits-all approach”, advocates music and exercise as helpful stimulants for people living with Parkinson’s:

“Music can help us stay focused on a particular activity, encourage rhythmic movements, or increase our enthusiasm with a stronger beat or faster pace.”

A piece of research in leading neurology journal Frontiers in Neurology also recommends music as a rehabilitative tool for Parkinson’s, saying “rhythm has a crucial role in rehabilitation, enhancing connections between the motor and auditory systems.”

Parkinson’s UK has called for more research in the area.

Derick says I want to prove to others that they can do something similar, depending on how bad they are. I’ve been 12 years with the disease now, and I find these 12 years have been the happiest of my life. It’s about determination, and be optimistic about your results, and you will achieve. The power of the brain is incredible. Mind over matter. Be positive, not negative – that’s the way forward with Parkinson’s.” www.classicfm.com/music-news/pianist-parkinsons-disease/

FREE COMMUNITY FIRST AID TRAINING - BRITISH RED CROSS / SURREY PREPARED    
Surrey Prepared and the British Red Cross are offering residents in Surrey, who have an interest in supporting their community, a chance to learn first aid skills which could help save a life. Suitable for beginners or those with existing knowledge, these relaxed and informal sessions are designed to give people the confidence and ability to react immediately to an incident, injury or illness.

Please book from one of the following two-hour sessions at the venue nearest to you:

• Reigate Tuesday 17 September 2019 – 18:30-20:30. Location to be confirmed.

• Chertsey Wednesday 23 October 2019– 18:30-20:30pm. Location to be confirmed www.eventbrite.co.uk/e/free-community-first-aid-training-british-red-cross-surrey-prepared-tickets-63980574621?lang=en-gb&locale=en_GB&view=domo

ACTION FOR HAPPINESS - EXPLORING WHAT MATTERS COURSE  
Exploring What Matters is a secular, science-based course for people who want to learn how to live happily and spread happiness to those around them.

It was created by the Action for Happiness charity to help people tune in to what really matters in life, connect with people around them and find small ways to start taking action.

On the course you will:

Meet with like-minded people to explore what really matters in life and find new ways of looking at things.

Enjoy expert videos, mindfulness exercises and a handbook full of resources to help you break big ideas into manageable chunks.

Take time each week to think of small actions you can take to create happiness for yourself and those around you.

People find it really valuable and often refer to what they learn on the course as life-changing.

The course will run for 8 weeks on Thursdays from 7pm till 9pm from 5th September to 24th October inclusive at Marianne’s Community Café, Unit 4, 2-10 Thames Street, Staines, TW18 4SD

The course is run by local volunteers and based on donations - so please feel free to give whatever you can afford 😊

Please note: this course is not group therapy, if you are experiencing severe challenges at the moment we recommend seeking alternative professional support.

The course is valued at £10 per week plus £10 for the course book (£90 total). But if you're struggling right now, please feel free to give whatever you can (e.g. £5). Everyone is welcome and we trust you to offer what is right for you. www.eventbrite.co.uk/e/the-action-for-happiness-course-staines-upon-thames-5-sep-2019-tickets-64418384121 

‘YOU DON’T LOOK SICK’ – A series published in Metro.co.uk telling the stories of people with invisible illness and disabilities.  
Chris Stennett, 26, from Felixstowe, Suffolk, has Facioscapulohumeral Muscular Dystrophy (FSHD) which is a genetic muscle-wasting condition that causes muscles to weaken and waste over time leading to increasing disability. It affects the muscles of the limb, shoulders and face and the level of impact varies between people with the condition. Currently the condition, which affects around 2,500 people in the UK, has no cure and there is limited research into it.

Chris had spent years wondering what was happening to his shoulders and he was eventually diagnosed in January 2019 through a physical assessment. He also had a genetic test to confirm his diagnosis in April 2019.

For years people would say things like ‘pull your shoulders back’ or tell him he has bad posture. He explains: ‘These are things I have heard repeatedly all my adult life. Now I know it was for good reason ‘I realised about six years ago that my chest muscles had vanished as well as any kind of scapular stability in my back, and that I was getting a lot of impingement in my shoulders.

I went to physio but the typical exercises for bad posture made my issues worse so I went without and managed it myself with less pain and improved strength over time, but still without having “proper posture” or chest strength / size.

Having played rugby for 13 years, and with the accompanying tremors in my shoulders and arms, I always assumed that my shoulders or neck had taken a hit somewhere and damaged nerves to certain muscles, or that I had simply trained myself into a less-than-ideal state.’ Chris suffered a third dislocation in his shoulder area in 2018 and went to a physio. There he was referred to a neurologist and was eventually diagnosed with the condition.

Between 10 to 20% of people with FSHD eventually need to use a wheelchair as the muscles weaken more and more but others don’t even realise they have the condition until they are well into old age – the impact it has varies hugely from person to person.

Chris has found support through talking about his condition online in support groups for people with FSHD, but he has found it much more difficult to discuss it in real life. He adds: ‘Talking to other people online definitely helped me overcome the shock of the diagnosis – they get it. ‘We have a great online “family”, that support one another emotionally and answer curiosities.

I got the electrolyte tip from this platform which helps a huge deal. ‘In real life, some people have said they have never noticed, which is odd because my posture is horrible. ‘Me “coming out” as such with this disability to somebody who is not either close to me, a healthcare professional or someone else with FSHD, is only something I have done very recently. The only reason I did was to highlight why I am raising money for Muscular Dystrophy UK, before this I was still dealing with it personally.’ metro.co.uk/2019/07/28/dont-look-sick-thought-just-bad-posture-found-muscles-wasting-away-10462807/

DEMENTIA AWARENESS WORKSHOPS  
People across Spelthorne now have the opportunity to find out more about dementia, thanks to a series of free workshops over the Autumn.

The local specialist provider of personal care in the home, Avidity Care, has set itself the challenge of hosting Dementia Awareness Workshops in six different locations across the community over September/October.

Managing Director of Avidity Care, Harpreet Rajasansi, said:

“One in four people will be affected by dementia in their lifetimes, which is why it’s important to work with individuals and their families to try and make life much easier for those who have it.

With the specialist services we provide at Avidity Care we are determined to do just that with these Autumn Dementia Awareness Sessions.”

Are you part of a community group, work with a housing provider, school or social club, or an individual who just wants to find out more about dementia? Would you like Avidity Care to visit your organisation to host a Dementia Awareness Workshop during the Autumn? If so, get in touch. Telephone 01784 559 762. Email: community@aviditycare.co.uk

UPGRADED SERVICE FOR BUS USERS IN NORTH SPELTHORNE. From 10 August Carlone Buses will be upgrading their 442 service to serve those between Stanwell and Heathrow Terminal 5. This includes a new Sunday Service. The new timetable can be viewed on their website: www.carlonelimited.co.uk

The new services came about as a result of a petition to the Spelthorne Joint Committee and negotiations between the County Council, Heathrow and Carlone Buses. If you have a local issue you would like to raise with the Joint Committee, more information is available on the website: www.surreycc.gov.uk/spelthorne

WE ARE LOOKING FOR NEW VOLUNTEERS!  
Cruse Bereavement Care was founded in 1959 and is a national charity providing free advice, information and support to adults, young people and children who are struggling to cope with grief arising from bereavement, whenever or however the death occurred.

We always need more volunteers to meet the constant demand for our services. None of what Cruse achieves would be possible without the passion, dedication and skills of our volunteers.

We are currently recruiting for our next annual intake, the training for which will begin in January 2020.

If you think you have the skills and empathy to work with those who are bereaved and are interested in joining our team of committed and enthusiastic volunteers, we’d love to hear from you!

Please visit www.cruse.org.uk/get-help/local-services/south/surrey-north/volunteering where you can download our information leaflet and application form.

You can also read about our volunteers and some of the people they have helped.

‘I CAN’T TAKE YOUR DOG I’VE GOT AN ALLERGY’ – TAXI DRIVER TAKEN TO COURT FOR REFUSING TO TAKE GUIDE DOG - Edited from  www.bbc.co.uk/news/disability-47136278 February 2019  
Discrimination against people with assistance dogs happens more often than you might imagine, and it never gets easier. BBC journalist Damon Rose tells his own story.

‘Transport for London (TfL) took a mini cab driver to court for refusing to take my guide dog, and I was due to be the witness. The driver pleaded not guilty but, five minutes before the trial was due to start, he changed his plea to guilty. I won, I'm very pleased.

Over the years, I became fed up - as driver after driver refused to carry me and my dog. I took to getting my iPhone out sometimes to film as I attempted to make journeys. And then, one morning in May last year, I captured one such refusal on video.

The driver greets me in a friendly manner and then he spots the dog. "Oh I'm sorry sir, I am allergic to dogs," he says.

I've learned that taxi drivers can't just say they're allergic and drive away. They need proof of their allergy because many would rather not carry a dog, perhaps not understanding that assistance dogs are highly trained and won't jump all over the seats like an excitable puppy.

The Equality Act 2010 states that taxi and minicab drivers must carry assistance dogs unless they have genuine health reasons not to do so. Local authorities will provide a driver with an exemption certificate if they give proof from an appropriately qualified medic. The certificates should then be available to show to an assistance dog owner on demand.

The ability to read the certificates is, of course, a bit of an issue for many guide dog owners - but my plan was to capture his paperwork on film and show it to a colleague later. So, I asked for his exemption certificate. The video shows him hunting through papers in his car and finding nothing - but he assures me he has an allergy and urges: "You can check with my GP."

"I'm getting sneezy because I'm staying near the dog," he says. "This is going to put me in danger of my health, and surely you don't really want that do you?" And indeed, I really wouldn't want him to be harmed if he did genuinely have an allergy. But was he being harmed? Or was I being wronged?

"If it's such a big health issue for you, you would have got an exemption certificate," you hear me say on the video.

While being questioned in court, the driver maintained he had an allergy but, nine months on from the incident, was still unable to provide proof. The driver worked for Uber but does not any more.

If you open the Uber app, go to the menu, click on Help then Accessibility, you'll see that Uber provides a specific space for assistance dog owners to report any issues arising when using the Uber partners taxi: "I want to report a service animal issue".

A survey of more than 1,000 assistance dog owners, conducted by Guide Dogs in spring 2015, found that 75% had been refused access to a restaurant, shop or taxi because they had an assistance dog with them.

My video footage helped me to get justice in this case.

FESTIVAL ORGANISERS CHANGE POLICY FOR DISABLED GIG-GOERS - Edited from www.bbc.co.uk/news/disability- 48853562 July 2019 
Virginie Assal had bought a seated ticket in December 2018 to see Janelle Monae perform at Castlefield Bowl in Manchester. She requested a seat away from the crowd and was told "that it was fine". But when she looked at the festival's website in June she saw that seats for mobility impaired people could no longer be assured.

Ms Assal has scoliosis, a serious back condition, which means she cannot stand for long periods. She also cannot risk being in a crowded area in case she gets hurt. She does not use a wheelchair but is mobility-impaired.

The Manchester International Festival (MIF) website said those who had already expressed they needed "access seating", or a wheelchair space, would receive a wristband allowing them into the access area.

When Ms Assal messaged MIF, it replied: "We will have an accessible seating area available for the performance. As we have limited capacity, we'd advise turning up early as the seating area will be first come first served."

It emerged only 12 reservable places were to be made available, for wheelchair-users only. A further 40 access seats were to be made available but could not be reserved.

Ms Assal complained to the festival organisers about its change of policy. She felt she could not have attended the gig with confidence in case she couldn't sit down. And, if she did get a seat, she would feel bad for potentially stopping another disabled person from sitting.

However, after the BBC reported her story on MIF apologised. It clarified that Ms Assal would be guaranteed a seat. It was sorry if the advice given was "at any point was confusing".

In a statement, MIF said it considered access a "key priority". "We work hard to ensure our events are as accessible as possible. MIF does not manage this particular space and although it is a standing event, we have worked closely with the external team to ensure there are accessible positions."

It asked that everyone booking tickets for an MIF event "make us aware of their access requirements when they book". It says it has increased the capacity of Castlefield Bowl to meet demand."

Ms Assal said she was "on the whole pleased and grateful. "It's a win, it's better.