This Story of the Month to Jason Liversidge. Jason has Motor Neurone Disease (MND) but doesn’t let anything stop him from accomplishing new challenges.
When you’re diagnosed with MND, you become aware of the many affects the disease can have on your body. It affects the nerves in brain and spinal cord. Some people can experience mental and physical difficulties, both of which affect an individual differently to another.
Some of the symptoms can include:
Muscle weakness
Emotional problems
Difficulty swallowing
Breathing problems
The disease affects up to 55,000 adults in the UK – Motor Neurone Disease Association
On Tuesday 18th July, Jason reached 3560 feet as he travelled to the summit of Mount Snowdon in his wheelchair. That’s impressive to say the least. He has inspired many people across the UK and we found his accomplishment to be our most inspired story this month.
Cumbria might not sound the ideal place for easy walks and accessible venues. There are challenging peaks, extensive lakes and frequent rivers leaving very few level spaces. But the coastal strip is a different matter with several little gems well worth a visit. And Ravenglass is my favourite!
It’s a tiny fishing port with a huge enclosed natural harbor which originally attracted the Romans with its shelter for their galleys en route to the Scottish wars.
The village is tiny. There’s one wide street with quaint cottages either side, many signed – Post Office, Reading Room, Station House and so on. They have relics of the past like the ancient petrol pump.
There’s a large central car park, well disguised, with plenty of blue badge parking, from which there are smooth paths to all parts of the village which you can explore to your hearts content.
Driving to the car park you will have already seen the boats at anchor in the bay and now you can actually access the beach at the end of the village down the concrete slope provided for the boats. The beach here is rough but hard with sand and stones giving a decent level surface for a little exploration to admire the scenery check the tides and spot the abundant wildlife.
After your exertions there are plenty of accessible cafes, pubs and restaurants to suit all tastes.
Another path from the car park will take you to the miniature railway only minutes away. Admittedly this path is a bit of a push as it goes over the “proper” railway. So, you could drive round to the Station car park where you will find more blue badge parking.
Now you can easily explore the Station, the trains, the shop, the cafe, and the museum. All of which are accessible with toilets. This used to be a proper working line taking miners a few miles inland to their work. It’s now a tourist route all the way with accessible carriages on the trains.
Get a ticket then enjoy the beautiful scenic route which has several stops you can explore, particularly at the end of the line where you have to get off while they swap the locomotive from one end to the other before the return trip. You can explore for as long as you want and catch a later train. If you’re lucky you will see foxes, badgers and rabbits together with a wealth of bird life along the route.
As if that’s not enough, back at base another smooth, flat path will take you to the remains of the old Roman Bath House once standing alongside the huge Roman fort (since demolished). This is a lovely undemanding walk with plenty of shade from the trees with views through to fields and to the sea. The remains are just alongside the path and can be reached on hard grass. Apparently these are the tallest Roman wall ruins in England.
If you want to make a weekend of it then visit Muncaster Castle only a minutes drive away.
They are very accessibly minded here. So, you can have fancy afternoon tea in the sumptuous castle, walk through the woods, around the gardens, see a falconry display, join in with the heron feeding maybe catch a medieval fayre. There’s something here for everyone. You can even rent an accessible cottage onsite.
I can thoroughly recommend Ravenglass and Muncaster for any disabled person wanting a cracking day out (family optional).
If this has whetted your appetite, you’ll need an accessible vehicle to get you there in the first place and to move around once there so why not contact Mobility Nationwide to find the perfect second-hand mobility vehicle for your needs.
You can also view their infographic below:
Would you like to share your favourite accessible attractions on our blog? Send an email to: info@disabledliving.co.uk
This guest blog is by Patrick Samuel, an artist with Asperger’s Syndrome, who discusses Art Therapy.
As a child I was hyperactive, and I think my mom recognized that early on. It was her who showed me how peaceful and rewarding drawing and painting could be.
We did a lot of arts and crafts sessions together. There was a lot of cutting and sticking, making decorations and things to hang around the house.
Unfortunately, between 1996 and 2016, I didn’t draw or paint at all. I forgot how. As hard as I tried to ignore the limitations Asperger’s placed on me, I was simply becoming less and less able to cope with the demands and pressures of adulthood. As a result, 2016 was the worst year of my life. It became much worse in September when I started teacher training. It eventually became clear that I was not getting the right support.
I let matters get worse and by December I was in hospital with an overdose, having attempted suicide for the second time in my life. My diagnosis, care plan, treatment plan, assessments and psychiatric evaluations followed. It’s all been very helpful, but I would not have gotten it if it I wasn’t willing to take responsibility for my actions. I had to face up to my limitations, accept my difference and not blindly ignore it.
The thing that played a big part in this turnaround of my destructive life was the start of my daily art therapy, which began one evening in December 2016.
On that first day, my carer placed an empty A3 drawing pad on my lap, perhaps frustrated at my endless silence. There was the complete inability to put my thoughts into words, or express my emotions and the lack of social imagination to be able to communicate precisely what I was thinking. I just didn’t want to talk anymore.
He told me to just draw what I was feeling. I hadn’t drawn in 20 years because I’d forgotten how… 40 minutes later I finished a self-portrait. Half of my face with rotting flesh and bone protruding, it reflected everything I was feeling, or rather not feeling. I was dead from the inside out and fed up of trying to hide it. This is who I was. In that moment, I actually felt something – a little feeling of release. And I was done for the day.
The next day I drew again. And so it went. Day after day. Slowly at first. Each day I’d complete a picture. Eventually they weren’t self-portraits anymore as I started to look beyond myself. I started to draw my dog and other animals. Forests and fields. Then other portraits. Then the moon, the stars, planets, galaxies, other universes, dimensions, portals. I was traveling, exploring…
The point is, Art Therapy is helping me to stop focusing on myself and looking inward.
It’s enabling me to look up and beyond. It’s given me the power to dream again, to envision a future me who could use these experiences to build something of a life that could help and inspire others. Art Therapy is a chance to use my Asperger’s for good, rather than the harm I’d been causing to myself and others.
Art Therapy is also helping me build social skills. I don’t just want to create art, I want to share it and I want to keep doing it for as long as I live now. In a short space of time I’ve secured over a dozen sponsors. I’ve also reached out to other artists and they’ve kindly donated many of their materials!
And they’re all keen to see how I’m developing as an artist and learning for the first time to manage my Asperger’s. It’s given me a topic to talk about that others can relate to and for the first time as well, I’m conversing with my neighbours.
My art is now taking me to festivals where I exhibit my work and can put into practice the social skills and coping mechanisms I’d been learning during my counselling with Mind. I now have my first solo exhibition coming up in November at the Dugdale Centre, titled ‘Escape and Return’.
What Art Therapy has also done is help me get to the bottom of problems and identify issues that I’ve been unable to access in other ways. There were a lot of questions about myself and my behaviour that I couldn’t understand or answer until I was first able to draw those pictures because that’s how my brain works – in pictures – not words.
People ask me what they should do and how they can get started because they don’t have the skills and abilities to create anything that can compare to other people’s work. I tell them what my carer said to me, “Draw what you feel”. Abilities, skills, technical know-how, none of these matters in that moment.
Draw what you feel and what comes from that is an honest representation of what you’re thinking and feeling. It’s all the things you couldn’t say before. It’s all the thoughts that were rustling through your head that wouldn’t settle before. It’s all the pain and hurt you couldn’t let go of. It’s all the anger you’ve been holding onto. It’s all the joy that comes with that sense of release.
Lastly, Art Therapy helps me go from strength to strength and blossom with skills I forgot I had, and learn new ones too; social skills, and technical skills. And coping mechanisms. I’m still awkward and nervous in conversations, I still find eye contact painful and fidget while talking, but at least I’m talking again.
Art for an autism exhibition
I never thought I’d be doing festivals or setting up an art stall somewhere or preparing exhibitions at galleries, but they’re social exercises as well and I’m meeting so many wonderful people and am able to put forward something positive and inspiring about autism and Asperger’s with my art and the story of my journey so far.
I used to say to an autistic girl I worked with for two years that I was there to help her find her super powers. Along the way I realized she was already amazing as she was, but watching her bloom with the benefits of Art Therapy, acquire so much confidence in herself and master so many social skills…the irony was that it took me so long to discover it in myself; that art and Asperger’s were my super powers all along.
To hear more about Patrick please visit his website.
We were pleased to welcome Jan from Sensory Kraft to our premises on Wednesday 19 July. Jan’s background involves marketing in a multi-sensory environment so we were very much looking forward to hearing about how Somna products benefit people, in particular those with sensory needs.
Information about Somna
Somna are a Swedish company who develop and provide research for cognitive products. They have many retailers across the world including: Sensory Calm, Sensory Bound, and O Neill Healthcare Ltd.
Somna products are available to the public.
Here is some research which has been shared by Somna and Sensory Kraft:
Insomnia is a common occurrence in today’s society and can have a negative impact on physiological and psychological and social well-being. There is therefore a need for simple, effective solutions to increase sleep quality. – Ackerley R, Badre G, Olausson H (2015), Positive Side Effects of a Weighted Blanket on Insomnia. J Sleep Med Disord 2(3): 1022
“Carrying out their research, they found that, the awareness of the body’s boundaries combined with oxycontin often had an anxiolytic effect on the participants.” – Björkdahl, A. (2015)
About the products
Weighted Gillet
To begin, we were presented with a child’s weighted gillet. This product is available in kids and adults sizes in a choice of 4 different colours for both male and females.
Afterwards, we were presented with products where members of staff began to feel more involved to try out the products (as the child’s gillet was too small to try on but we did get to feel the texture and weight of this item).
Somna Comforter Heavy Duty
This product is heavier than the regular Somna Comforter. Weighing 15kg, its deep grey fabric is strong and easy to maintain keeping it clean. The zips allow the comforter to be opened so that it can be split into two parts making it easier for washing.
Somna Comforter
Jan explained that, the Somna Comforter Heavy Duty is able to warm and cool the body accordingly. The deep pressure therapy allows a relaxing sensation and these can easily be stored in our living rooms. They are available in different sizes (4, 5, and 7) and are really beneficial for people who suffer from insomnia. The Somna Comforter is smaller than the Heavy Duty. It can be used on your lap or to wrap around your shoulders.
Somna Blanket
This Somna Blanket comes with a wash bag and washing instructions. This product provides a sense of safety and comfort. It is guaranteed to give you a relaxing, peaceful night’s sleep.
Somna Comforter Active
This product lies on your lap. Jan said:
The Somna Comforter Active has received brilliant feedback especially with its pocket feature.
Somna Collar
This product goes around your neck. We learnt that the Somna Collar can increase body awareness and improve posture.
Angela, from Disabled Living said:
This reduces my neck pain from when I’ve been at my desk.
All of Somna’s products are available to view on their website.
Disabled Living has been awarded £58,400 from the Heritage Lottery Fund (HLF) for an exciting project From Donkeys to Innovators that celebrates its rich and unique 120 year history.
Made possible by money raised by National Lottery players, the project focuses on the charity’s history from its establishment as an organisation teaching children to be kind to animals into its current day role working with disabled people to provide innovative advice and information.
From Donkeys to Innovators celebrates the lives of the people involved with Disabled Living sharing their stories and contribution to the charity’s past. It also provides an opportunity for the public to learn more about Manchester’s social history as the charity has links with the city’s economic, cultural and health heritage, involving diverse community organisations and institutions.
Importantly, the voices of disabled people will be recognised, preserved and celebrated, documenting an important part of disability heritage.
Having nearly lost all of its archive in a fire in recent years, one key element of the project will be to ensure that the charity’s stories are preserved for the future by digitising all materials. This will also mean that the rich and vibrant stories can be viewed and shared with the general public.
Young disabled people will be involved in making their own film reflecting on being disabled in the past compared to their own experiences today. They will use Disabled Living’s archives to gain an understanding of how disabled people lived years ago.
This is where we would like to hear from you…
We would like to talk to young people (14-25 years) who have a disability or additional needs who would like to be involved in making a film by interviewing older disabled people about their experiences when they were children. We are looking for six young people who live, ideally in the North West of England who could travel to Manchester for filming.
This project is funded by the Heritage Lottery Fund.
For further information about any of the above please contact Disabled Living on 0161 214 4590 or email; debra.evans@disabledliving.co.uk
Chris shares his experience at Bluedot festival. It’s that time of year again – festival season. Sun, rain, mud, huge crowds – what could be more exciting for a wheelchair user?
Doesn’t immediately spring to mind as your best bet – acres of bumpy, tufty grass between car park and arena, maybe rain, sinking up to your axles in mud, no access to toilets, queues everywhere, can’t get anywhere near the bar or the burgers and generally getting trampled all the time by hordes of able bods rushing to the front who haven’t seen you way down there.
A bit different from the image of sitting in a grassy field without a care in the world, listening to the gorgeous music, watching all your favourite groups! What could possibly go wrong?
I’ve been out of touch for too long on this sort of scene – my first festival was Knebworth in the seventies and it really was all about sitting in a field all day. I remember queuing up for early morning entry with some of my fellow revellers, choosing a spot halfway up the hill with a brilliant view and not moving an inch until 2.00 am. the next day! Certainly wouldn’t advise that approach now.
Well… worry not. This can all be sorted and a great time is there for the taking
Consider Bluedot – a new festival based around Jodrell Bank. Besides three days of great music there’s a slant towards science with all the public facilities at Jodrell available, lots of temporary stuff as well, guest speakers, international links, demonstrations – all themed around us (the Bluedot of earth from space), and all very accessible indeed.
I could only go for one day and I knew who I wanted to see so I purchased my day ticket months ago. A very clear link on the festival website sent me to loads of accessibility info where I could download an email to get me a parking space near to the actual festival entrance and a free companion ticket if needed (I didn’t as my companion was unavoidably required elsewhere so I went ahead alone).
In general, always head for the festival website itself first, don’t go to Ticketmaster, Ticketline etc. They will sell tickets to you of course but as soon as you look for accessible tickets or advice on accessibility or similar they will send you to the venue website, so don’t waste your time.
So, the big day arrived. On reaching Jodrell Bank, I looked for the specific car park mentioned on the email, found it easily (very well signed) and then saw cars as far as the eye could see! Disaster! Miles to push on the grass! On my own! Oh gee!
But no, on production of my email at the gate I was told to drive straight to the front where plenty of space was still being kept available next to the festival entrance. Every steward knew what to do.
After a quick push to the entrance where my ticket was checked I was told to go the access reception tent to get a wrist band which would allow me access to the viewing platform and to the portable but accessible toilets. Wow!
Whilst queuing at the access reception I then noticed lots of signage:
Did I want accessible camping? (died and gone to heaven – what consideration, and a first for me)
Did I want a quiet area for camping? (not really – but could work for some)
Did I want any help with hearing loops? (Maybe afterwards!)
Did I want viewing platform access? (Oh yes – bring it on!)
Did I need to know where the accessible toilets were located? (Absolutely!)
Did I want advice on types of food available, gluten free, vegan, vegetarian? (not my bag but I know it goes on)
So now I can expect consideration over appropriate parking, a dedicated viewing platform, accessible toilets, low counters at the food and drink outlets – the list goes on and on.
Having relaxed, I wandered around looking at what was on offer. Hard, smooth grass and proper tarmacked paths made progress easy and good site planning meant you always seemed to have space. There was so much food and so many events. Eventually, I settled for a steak wrap and a coffee before wandering across to the viewing platform. There was plenty of help available if needed.
There were accessible toilets behind the viewing platform itself so I chose my spot and settled in. Absolutely brilliant!
Regular festival goers tell me I can find all these things around the country, and hearing impaired discos, silent discos, sensory discos… It’s all becoming mainstream now so don’t hold back.
Bluedot was also very family friendly so the vibe was tremendous. Wandering around all day nobody gave me a second look. If I stopped somewhere passers by would occasionally ask if I needed help but not intrusively. It all felt relaxed and comfortable. I never felt isolated or out of place. Lots of staff and volunteers were available to help everyone, but no-one in your face.
Next year I think I’ll just have to do the accessible camping – I owe it to myself!
So, give it a try, it’s not all Glastonbury and the mud, what have you got to lose? If you spot a festival you fancy, go straight to their website and look for anything to do with access – a link, direct info, an email address, a phone number and follow it up. You owe it to yourself!
Would you like to share your experience of an accessible festival with us? Get in touch by sending an email to: info@disabledliving.co.uk for the chance to feature on Disabled Living’s blog.
Throughout this week we have been sharing some questions on social media to help you think about your healthy or unhealthy lifestyle. As Health Information Week is 3 – 9 July, we are going to share our top 5 steps to a healthy lifestyle. It’s not just a healthy diet and exercise that’s involved, which is what some people believe it to be.
It is essential that quality information is provided to people to enable them to better manage their health and wellbeing and make fully informed decisions about their treatment and care. Library and Knowledge specialists are uniquely positioned to underpin this vital agenda, working in partnership with clinical staff and other information providers.
Patrick Mitchell, Regional Director – South of England, Health Education England (HEE)
Stay hydrated
Whether you’re at home, in education, work, on a day out, or wherever, it is so important to stay hydrated. Think about all of the brain fuel you’re using, especially if you’re concentrating on a project or you’re busy with work. Fluids in our body help to maintain many functions such as the heart, brain, and muscles. Click here to see what the NHS recommends on the types of fluid intakes and amounts.
Have a balanced diet
A balanced diet, it can mean one thing to one person, and something completely different to another. Today, we live in a world where there’s so much controversy as to what’s actually healthy for us. However, we can eat the foods we enjoy as long as we don’t over indulge. Do you have a diet which includes nutrients from all of the food groups?
Sometimes, it’s worth considering if you really need that snack! Many of us mistake thirst for hunger at times too.
Exercise and keep active
The thought of exercise might seem like a lot of effort, however the after effect is known to boost your happiness levels. Many of us can feel accomplished when we reach goals we never knew our strength could reach. Keeping active can boost our metabolism and reduce many health risks such as heart disease. Advice from the NHS about how to stay healthy as a disabled person can be found here.
Think positively
All of the above can give you a boost to help you to approach life with more energy and enthusiasm. Thinking positively enables you to do more of the things you love and think less about the things that are worrying you. If something is on your mind, you could: find someone to talk to, explore different remedies, or find a hobby to occupy you.
Have enough sleep
You may be wondering what ‘enough’ sleep is. Some of us need the standard 8 hours of sleep while others need more, or even less. If you are constantly waking up tired especially knowing you have a long, busy day ahead, you may need to get some more sleep. Sleep can help to boost your mental wellbeing and help you to concentrate with whatever the day throws at you.
If there’s one thing you do this week, evaluate how healthy your lifestyle is, and if improvements can be made, make a start with one of these steps to see how it can make an impact on your health.
On Tuesday 4 July, Disabled Living hosted our very own 1940’s Dementia Tea Dance in coordination with Health Information Week. The aim of this event was to kick-start our celebrations for providing 120 years of service.
The event was for people with dementia and their carers to enjoy an afternoon filled with music by The Daisies. Many of our guests got into the celebratory spirit as they danced and sang to songs from the 1940’s, 50’s, and 60’s.
Disabled Living hired The Daisies to perform at a 1940’s themed tea dance for people with dementia, their relatives and carers. This event was to mark the start of Disabled Living celebrating 120 years of providing services.
Debra Evans, Chief Executive of Disabled Living said:
It was essential we had a very interactive and upbeat performance as photographs and videos which we taken on the day will be used for social media and our website. In addition, Disabled Living have been awarded Heritage Lottery Funding for a range of projects showcasing our history and this event will be captured within elements of these projects.
Our guests and staff absolutely loved the show The Daisies put on; their compilation of tracks was spot on, with an extremely polished and professional performance.
We were delighted to have representatives from Slater and Gordon Lawyers who came along to provide people with advice about wills, trusts and mental capacity issues. To ensure our guests, relatives and carers had up to date knowledge on the range of services available to support people with dementia we also welcomed our colleagues from the Alzheimer’s Society.
To fit into the 1940’s theme, we had vintage posters displayed around the room including ‘We Can Do It!’ and ‘Dig for Victory’.
Tea was served in our vintage tea pots and cakes were displayed on these lovely vibrant floral two-tier cake stands. The whole selection of food enjoyed by all included sandwiches, cakes, scones and of course, plenty of cups of tea and coffee. The china plates, cups and saucers made a wonderful contribution to our 1940’s theme.
Thank you to Le Mange Tout for your catering service – you never disappoint us.
Our guests also had the chance to experience our multi-sensory rooms to get a feel for the vibrant and relaxed atmosphere that they have to offer.
Members of staff happily joined in with the 1940’s theme and wore clothing which represented that era. Many of the female members of staff wore 1940’s cocktail dresses, polka-dot dresses, and another included a land girl outfit, with our hair styled in waves, curls, and rolls. Lawrence our caretaker suited up for the occasion too!
We would like to thank IAS, De Brook Lodge (Ideal Care Homes), all of our guests and members of staff who joined us to kick-start our celebrations for 120 years of providing services and being part of this special occasion.
A guide to alcoholism and dementia by Oliver Clark. This post also includes an infographic {showing|detailing|outlining the long-term effects of alcohol on the brain.
