On the evening of 17 July our very own Ryan from the MS-UK Helpline attended and supported an evening run by Julie Webster and Helen Willis, the MS nurses from Broomfield Hospital in Chelmsford and three of the local MS Society branches. In this blog, Ryan tells us all about it…
It was really good to be working together with the Local MS community, MS clinical services and the MS Society. We always enjoy these partnership events and hope that there will be many more to come.
The event was aimed at people who had attended a ‘Getting to Grips’ course in the last few years. The Getting to Grips course is a valuable introduction to all things multiple sclerosis for people who are newly diagnosed. The content of the original course usually includes connecting people to the local MS community and MS clinical services, and gives talks and information on symptom management, diet, lifestyle, welfare rights and employment issues. Many of the local MS Society branches run courses either the same (or very similar in nature) which are tailored to a specific area. If you are newly diagnosed with MS and want to know if there is a ‘Getting to Grips’ course running near you, contact your local MS Society branch.
The session I attended was an informal follow up bringing prior participants together to gain further information and support. There were approximately 50 people in attendance who were a mix of people with MS, family members, friends and allies. The evening had a strong emphasis on self-management, wellness, lifestyle and diet.
There was a presentation from a local man living with MS that gave a personal perspective about living well with secondary progressive MS, he talked openly and honestly about his journey so far, sharing the things that he has tried over time and the strategies he uses now to self-mange his symptoms.
I then spoke about ‘Exercise and Wellness’, giving information on the proven benefits of exercise for people with MS, the types of exercise and activity that people can do, tips on getting exercise right and how to access support locally. I also talked about ‘wellness’ and the importance of having a holistic approach, ensuring that consideration has been given to physical, mental, social and emotional wellbeing.
To highlight the importance of this holistic approach, which thankfully many clinicians and MS professionals are now taking on board, I spoke about the ‘MS Brain Health’ Initiative. The MS Brain Health initiative is an international partnership of clinicians and organisations calling for change in the management of MS. The initiative has emerged from a new evidence-based international report that recommends strategies to increase lifelong ‘brain health’. The strategy gives tips for ‘six ways to a brain-healthy lifestyle’ which very much reflects the holistic approach to gain a better quality of life in the longer term. I also talked about MS-UK’s wellness studio Josephs Court and the range of support on offer to support people with a neurological condition in Essex.
The group then had talks that gave further personal perspectives of living with the effects of MS. We heard from a family member, who spoke from the heart and gave an open and frank insight into the shared journey that families undertake after a diagnosis of MS, as well as an incredibly inspirational story about one man’s mission towards fitness post diagnosis, which included cycling from Essex to the south of France! It was great to hear from people living life to the full.
Overall the evening was incredibly interesting with the great outcome of connecting members of the MS community, giving insights into living with MS and ensuring people had up to date and trusted information.