Christmas is a time for reflection and to spend it with friends and family.
#ThinkSocial
I went for a long run yesterday that allowed me to reflect on a good year for Barts-MS and for people living with multiple sclerosis (pwMS). We are making unprecedented advances in the treatment of MS. PwMS are being diagnosed earlier, treated earlier and are less disabled than before. We are seeing a drop off in the number of pwMS entering the so-called secondary progressive stage of the disease, i.e. less walking sticks and fewer wheelchairs.
Despite these incredible advances, there are a lot of people who have missed the boat and have had their lives turned upside down by MS. We know MS is a very stigmatizing disease and leads to social isolation and loneliness. A recent study showed that 3 out of 5 pwMS described themselves as being lonely. If you know someone with MS, please pick-up the phone and call them and have a chat. Visit them and/or make arrangements to take them for a walk. Socialise and make them feel loved and wanted. Christmas is a time for sharing and being together.
Twenty-nineteen is going to be the year of thinking social (#ThinkSocial). We are launching several initiatives and research projects exploring how we can ‘maximise’ and ‘expand’ the social capital of pwMS. I am convinced that pwMS who have large social networks do better than pwMS who don’t.
Twas the night
Before Christmas
When all through the house
Not a creature was stirring
Not even a mouse
The stockings all hung
By the chimney with care
In hopes
That St. Nicholas
Soon would be there
The children were nestled
All safe in their beds
While visions of sugarplums
Danced in their heads
And mom in her kerchief
And I in my cap,
Had just settled down
For a long winter’s nap
When out on the lawn
There arose such a clatter
I sprang from my bed
To see what was the matter
Away to the window
I flew like a flash
Tore open the shutters
And threw up the sash
The moon on the breast
Of the new fallen snow
Gave the lustre
Of midday
To object below
When what
To my wandering eyes
Should appear
But a miniature sleigh
And eight tiny reindeer
With a little ol driver
So lively and quick
I knew in a moment
It must be St. Nick
More rapid than eagles
His courses they came
As he whistled
And shouted
And called
Them by name
Now dasher
Now dancer
Now prancer
Now vixen
On Comet
On Cupid
On Donder
An Blitzen
To the top
Of the porch
To the top
Of the wall
Now dash-away
Dash-away
Dash-away all
As dry leaves
Before the wild
Hurricane fly
When they meet
With an obstacle
Mount to the sky
So up
To the housetop
The courses
They flew
With a sleigh
Full of toys
And St. Nicholas too
And then
In a twinkling
I heard on the roof
The prancing
And pawing
Of each little hoof
As I drew in my head
And was turning around
Down the chimney
St. Nicholas
Came with a bound
He was dressed
All in fur
From his head
To his foot
And his clothes
Were all tarnished
With ashes and soot
A bundle of toys
He had flung
On his back
And he looked
Like a peddler
Just opening
His pack
His eyes
How they twinkle
His dimples how merry
His cheeks
Were like roses
His nose like a cherry
His drawl little mouth
Was drawn up like a bow
And the beard of his chin
Was a white as the snow
The stump of his pipe
He held tight
In his teeth
And the smoke it
Encircled his head
Like a wreath
He had a broad face
And a round little belly
That shook when he laughed
Like a bowl full of jelly
He was chubby and plump
A right jolly old elf
I laughed when I saw him
In spite of myself
A wink of his eye
And a twist of his head
Soon gave me to know
I had nothing to dread
He spoke not a word
But went straight
To his work
And filled
All the stockings
Then turned
With a jerk
An laying a finger
Along side his nose
An giving a nod
Up the chimney
He rose
He sprang
To his sleigh
To his team
Gave a whistle
An away
They all flew
Like the down
Of a thistle
But I heard him exclaim
As he drove out of sight
Happy Christmas to all
And to all a good night
Hmmm
Merry Christmas from Barts-MS!
Fingers crossed that some useful things come from these initiatives and research projects as I'm convinced of the value of them.Wanna pick you up tho ProfG on your assertion where it references 'a large social network' Social support research says that perceived support – the belief that love and caring is potentially available is more important than actual support. Strikingly Cohen and Wills (1980s I think) asserted that the most important indicator of social support was if someone reported having a single intimate relationship with another in whom they could confide.I do not want to play down in anyway the experience of loneliness for PwMS but make, I hope, the valid point that perception can also be pertinent. It's Boxing Day and I'm alone. Husband and son are with family. It was thanks to watching Aaron Boster's 'Multiple Sclerosis Holiday Hacks(2018)' that I have been able to be alone and to be comfortable with it. I knew I'd need quiet time (downtime) after the demands of Xmas Day, but it felt like a horrible idea to not head off this morning for a second day of family time. After watching the Aaron vid I was able to see it as a positive.Thanks to the Bart's team for the Blog as an important part of my social network.Enjoy the festive period!
Re: "… perception can also be pertinent"I agree, but perception may still be social capital. You have your contacts and extended family to call upon if something happens. Not having them makes you poorer.
Re: "… the Blog as an important part of my social network…."This is something we want to explore. Does engaging with PPI (patient-public initiatives) increase your social capital and does it improve your quality of life?
This is taking taking me back to my qualification/ training days. I've had to google to be confident of whether I want to refer to Bridging or Bonding Social Captial.So, yes: knowing that bridging s.c enables different groups or individuals to share and exchange information etc to the benefit of all, regardless of vital differences such as class, race etc, the Blog can be defined in this way. Clearly, it is largely one-way traffic: experts post and we consume what's been written. However, there is a sufficient degree of reciprocation that allows this to be a form of SC. This doesn't dispute any potential negatives, but as the feedback to the Blog shows for example: I'm not the one PwMS who accesses the Blog daily and credits it with a huge contribution to the quality of my life!
I spent Christmas day alone and have MS. It was my second Christmas day alone and I was fine. I see Christmas a huge part as consumer festival and that makes me disheartened. I went out this morning and the piles of plastic wrapping for food etc, out for the rubbish collection is terrible,the poor planet. For me its not about increasing my social capital to cope with being alone, it's about understanding my state of mind and keeping busy. More than 50% of the UK population has no religion, according to the Guardian in September 2017, a study found.