At Barts-MS we #ThinkSocial. We hypothesise that MS is like other chronic diseases and is affected by social capital and the social determinants of disease (SDOD). In short, if you have high social capital you will have a better outcome and if you have a favourable social profile you will also do better regardless of the type of MS you have. We are now actively researching these issues and have posted about them in the past and review them in this short video.
We hypothesise that you can increase your social capital by adopting practices to maintain and develop new relationships. These reciprocal relationships help you develop resilience to cope with chronic diseases such as MS. To this end, we are pleased to be involved with Oceans of Hope; a sailing charity that will ‘change the perceptions of multiple sclerosis by showing what is possible when people with a chronic disease are empowered to conquer their individual challenges, by engaging people whose lives are touched by MS and developing networks as a foundation for life-changing behaviours’.
Saúl Reyes, our Social Capital ECTRIMS fellow, Sue Radford (MS Brain Health) and I are in Edinburgh today to support Oceans of Hope and to celebrate what they are doing for people with MS. Sailing in the open ocean may seem quite extreme, but you could launch and run your own initiatives locally.
A lot of you were quite upset by my post of a patient of mine who is socially isolated and living on a diet of tea & toast. As a medical practitioner working in the NHS as it is currently configured I am relatively powerless to change this lady’s trajectory. This is why we need social prescribing and initiatives like Oceans of Hope, which promise to change things.
I envisage a future when social prescribing will be part and parcel of the holistic MS service we provide and we will have much less social isolation and more importantly better MS outcomes and happier MSers. Or am I wrong?
People with MS socially isolate when they are cognitively compramised. Cognition is social currency and no one likes to say this but the less of it you have, the less loved you are. If something as traumatic as MS hits you in your 20’s, when you’re supposed to be in your prime, you don’t form new connections like your peers. Your health declines, you are flakey with your ability and times to go out, your finances dwindle, you disappear and no one asks where you went because they simply cannot relate. This is the harsh reality.
I don’t see how “social prescription ” would help in any way to give MSers back any semblance of a normal life. You want people to be social, you need to give them the functionality to do so.
Besides medication, discipline, no alcohol consumption, exercise that induces lactic acid, therapy, and decreasing inflammation using NSAIDs have been shown to help remyelination and decreases inflammation. Prescribe that.
I think in Theory it’s a good thought. We moved to Virginia after living in Vermont for 40 years. Our decision mostly related to unaffordable Taxes, expenses and a pension cut short by having to retire early. The difficulty of a move has been difficult but good. We lost friends except by phone. Have friends here and relatives. I looked into Adult Day center and it was mostly bingo and more elderly people like who I used to Case manage. I am on Twitter and have conversations, Church, prayers, Sharing Images, Music, Art, Opinions on Twitter. For me it’s better than going out. I can do it from any room, no pressure, no schedule, no car travel. Virtual connections. Church parking lots empty except for Sunday morning. Internet is open 24/7. I used to meet people at work, when younger in a bar. No more of that. I hope Science doesn’t devalue social media. It has faults, but it’s My go to for now.
What about differences in education, ethnicity and culture?
Prof G – do you still parkrun? The use of parkrunning in social prescribing is going from strength to strength. There are over 800 parkrunners in the U.K. with MS and we have gathered over 230 of us into a supportive community on FB using the #Run4MS tag you initially promoted. We have amazingly speedy runners and ultra-runners, mid pack joggers, walkers, wheelers and volunteers – all supporting and inspiring one another – in our running, in managing our MS and in celebrating all those achievements, big and small, which make us proud. I generally feel I have good social capital (I work full time, I’m newly married and I have supportive friends and family) – but even with that the weight of the MS diagnosis is isolating. This community- and it’s shared hopes for a healthy, happy future- has really helped me.
Pop by and say hello!
Yes, I do still do parkruns and did one last Saturday. I ran a PB in 20:32 (1st in my age class). I agree with you and promote couch-2-five and parkruns all the time.
Hi-5 on a very speedy PB!
The MS Soc are “taking over” Gladstone parkrun on 19 Oct if you fancy a spot of north west London tourism! We had a great MS Trust takeover at Letchworth last year too.
Link to the group below if anyone else is keen to learn more about participating in parkrun with MS
https://www.facebook.com/groups/parkrun.for.people.with.multiple.sclerosis
Hi-5 on an amazingly speedy PB!
The MS Soc are “taking over” Gladstone parkrun on 19 October if you fancy a spot of North West London tourism? The MS Trust takeover of Letchworth parkrun last year was fab!
Link below to the FB group if anyone is interested in learning more about parkrun for people affected by MS.
https://www.facebook.com/groups/parkrun.for.people.with.multiple.sclerosis
My 17 year old Daughter was just diagnosed with MS. And my daughter and I are still trying to come to terms that she has this disease. Im reading and learning about MS. I as a mother feel scared.