A fantastic blog by PAMIS Accessible Leisure Worker, Andrew Smart, about the Ultra Marathon he is running to raise awareness of profound and multiple learning disabilities (PMLD). Some wonderful family carers have shared their own poetry and stories with Andrew to help give people a better understanding of PMLD. Thank you to the families who shared these stories.
On 22 October this year I will be running the Ultra Tour of Edinburgh, the 34 mile race will be my first Ultra Marathon. The race is a combination of road and trail running around Edinburgh city centre, the Pentland Hills and back around the city to finish at Murrayfield Stadium.
I am doing this to test myself both physically and mentally and through this challenge I would also like to take the opportunity to help raise awareness for people with profound and multiple learning disabilities (PMLD) and their family carers.
Having raised money in 2016 I would like to ask people to please take some time to read the information below on PMLD as well as the stories and poetry told by family carers.
What is PMLD?
People with PMLD are a group of individuals with learning disabilities in the profound range and have a number of complex healthcare needs. Their disabilities can present challenges for them and those providing care. A diagnosis of a profound and multiple learning disability is used when someone has more than one disability, with the most significant being a learning disability.
Many people diagnosed with PMLD will also have a sensory or physical disability, or mental health difficulties. People with PMLD need a carer or carers to help them with most areas of everyday life.
However, PAMIS recognise that profound also means deep, intense, wise and requiring great insight or knowledge. Although many people with PMLD have significant disabilities, they are also teachers, facilitators and can make a great contribution to our lives.
Being All Right
There are days when I wonder what’s wrong with me
There’s not really anything much you can see
But it often catches me quite unawares
When I’m out shopping or drying my hair.
It’s not contagious but I’ve not found a cure
Just one of those things that you have to endure
I do smile a lot but behind the façade
At times I just feel so unbearably sad
What is this dire condition I hear you say
You seem to have managed to hide it away?
You worked hard all those years and now you’ve retired
What about those arty new skills you’ve acquired?
You’ve changed your lifestyle, you eat quinoa and grains
You’re seen beachcombing for hours, even in the rain
You’ve been known to write poetry on the train
Oh! For goodness sake you’ve become such a pain
So anyway… back to the point. I’ve digressed.
That’s just displacement, is what Freud would have said
Why is it so hard to say what’s still hurting?
Classic behavioural avoidance coping!
I was stunned to learn, my malaise has its own name
It turns out chronic sorrow’s the name of the game
Just a few words will tell all you need to know
Guilt about yesterday and fear for tomorrow
I could tell you about the thoughts that haunt my nights
Pondering the imponderables; the fears and the doubts
About the things I didn’t do, but should have done
And the things that I did, that I shouldn’t have done
I wonder whether it might be all about guilt
And how to be forgiven for our perceived fault
But no one else thinks that we’ve done anything wrong
So we’ll have to forgive ourselves all on our own
But hang on a minute. Just listen to me
Life hasn’t all been doom, gloom and misery
So much has been lost but much more has been found
So many silver linings I could recount
Only Lauren thinks that my singing’s great music
Or laughs at my dancing and other daft antics
My food’s not fine dining but she eats every crumb
She can only say one word, but that word is mum.
Would I change anything? Well of course I would
But that line of thought does no one any good
No; that’s not a route that I want to go down
We’ll just do our utmost to make this life count
Lauren is a person with a mind of her own
Life’s an adventure; a journey to the unknown
So who cares if her label is PMLD?
She’ll always be my bairn and that’s all right with me
A Carers Point of View
Being a carer for me is a rollercoaster of emotions. The highs when something is achieved which you never thought possible, to the constant battles to fulfil a disabled person’s life and not wanting them to miss out on opportunities like everyone else. Then there’s dealing with all the paperwork, appointments, deliveries, prescriptions. It really becomes overwhelming at times. My son turns 16 in October and having PAMIS in our lives, with Andrew organising his fantastic activities which we all look forward to attending as a family, to Maureen being there with a listening ear to guide you through some of the harder times, really makes a massive difference to us and for me being a carer.
I am only a Mum!
I am only a Mum! What is a Mum? There are as many answers as there are people but generally a mum is everything to everyone and for Mums of children and adults with PMLD that job title includes so much more. As can be imagined by all that I need to take when I go out with my son.
A quick look in my copious handbag might raise a few questions. Amongst the usual essentials you will generally find, a packet of baby wipes, and tissues (mop-ups); spare batteries; charger for communication device (talker); Allan keys and screw-drivers (emergency wheelchair repairs); spare cartons of soya drink and juice; spare fidget cubes and an I-pad and that is just for starters. A minimum of three bags are hooked on the back of the wheelchair, one for emergency medical equipment; one with spare clothes, pads and changing items and a third for the talker.
Getting into our WAV or Wheelchair Accessible Vehicle is another lengthy process, using the tail lift up into the vehicle my son can travel safely and comfortably in his wheelchair, this however needs to be secured with four separate clamps and legally required 3 point seatbelt. The first time I did this myself it took me 27 minutes, nowadays I have it down to a nifty 7 or 8 minutes with my sons co-operation. Better – but still not quick enough to be bank robbers!
I frequently joke that we move house every time we go away – our adapted transit van is packed with everything from a mobile hoist and charger unit, positioning cushions, feed pump, stand, feeds and equipment for gastronomy feeds, enough supplies of medicines and medical equipment to set up a small filed hospital; huge packets of large size incontinence pads, multi-packs of wipes, creams and cotton wool. Waterproof sheets, disposable bed pads, wheelchair charger, and cool-box with ice -packs for medications that has to be kept in the fridge. And that is just the additional extras before we get started on the duplicate amounts of clothing, entertainment and the usual things one takes on holiday.
Doesn’t matter if it is for one night or our annual holiday we still look like we are moving house. Who needs brain training when faced with the challenge of fitting it all into the car while still allowing for wheelchair access right through the car.
Our family, that is my son and I have a very different life to most and there are many ups and downs but the path is made significantly easier by Andrew and his colleagues from PAMIS.
From organising activities like wheelchair skating and dancing, hydrotherapy swim sessions and school holiday activities. My son has ‘ridden’ a bike in his powerchair, enjoyed the benefits of rebound therapy, indulged in his passion for handling snakes and made some lovely friends.
I have been supported through difficult times, enjoyed my sons pleasure in being able to participate in these activities and many more, ‘normal’ for anyone else, but extraordinary for him; and I too have made many friends – friends who understand why I need a shopping sized handbag!
Thank you to everyone at PAMIS and happy running Andrew.