Jewish Care support group share their stories of living with MS30 May 2019
On World MS Day, 30 May 2019, the global MS community are highlighting the unseen issues that are seriously impacting the lives of millions. Everyday people living with Multiple Sclerosis, to date a lifelong chronic condition, are coping with its impact on their lives.
Set up 14 years ago by a group of like-minded people, JEMS is one of Jewish Care’s peer to peer support groups for anyone in the Jewish community with a diagnosis of Multiple Sclerosis (MS), together with their family members, who could be their spouse, partner, child or someone caring for a family member with MS. The JEMS group provides people going through similar experiences with an opportunity to connect and gain practical and emotional support so that those living with MS and those close to them, do not have to struggle alone. The group meets on the first Wednesday evening of the month at a venue in NW London.
The symptoms of MS differ widely from person to person and it is a neurological condition affecting the brain and spinal cord. The myelin coating protecting nerves are damaged, causing a range of symptoms which differ from person to person.
One member of JEMS, Fiona Elias, 34 is a, mum of two girls, aged 6 and 2, and a Community Programmer for Jewish Care who has been attending the JEMS group for several years. After showing signs of MS in 2006, her formal diagnosis in the UK was confirmed after the birth of her second daughter in 2016.
“Everyone at the JEMS group is so supportive, we’ve made friends and stay in touch with one another. As someone with MS it’s been so important to me to have the group.
“People are so warm and open but it’s such a varied collection of individuals, at all ages and stages of the disease, who’ve been brought together by having MS. Everyone shares what’s been helpful to them and the speakers are brilliant.
“It’s so important that people living with hidden diseases like MS can talk openly about their conditions as so many people can be left struggling alone.”
During the 10 years that Fiona’s diagnosis was not confirmed in the UK and was therefore untreated, her condition gradually declined affecting all areas of her life. In an indeterminate amount of time she knew it could progress to the point that she would need to use a wheelchair all the time. She recently underwent a new treatment, Hematopoietic Stem Cell Transplantation, crowdfunding for the cost of her treatment at A.A. Maximov hospital in Moscow, since the treatment is not widely available in the UK.
Sylvie Chronick, who is in her 60’s was diagnosed with MS 20+ years ago and has been going to the group for approximately 10 years. She has met people of all ages and backgrounds who are at different stages of the disease. “When I was first told I had MS I felt devastated and experienced depression. I also feared for the future”, says Sylvie. “You need acceptance before you can see a way to help yourself. Going to JEMS helped me as the group enable each other to cope better by sharing experiences, be that emotional or practical.”
The group is open to carers as well as people living with MS. Sylvie’s husband, Jeff says, “At first I was sceptical about going to a support group but now I would say to anyone, try it. You have nothing to lose and a lot to gain. MS affects people in such different ways but having the support of such an incredible group has been invaluable to both myself and my wife.”
John Stillitz, 62, has been living with MS since he was 30, but it was nearly 30 years later when he was formally diagnosed. That was 10 years ago. John says, “JEMS is tremendously comforting and we seem to get so much benefit from the group. We encourage each other to be more optimistic about the future. Everyone seems to leave for home feeling so much deal better than when they arrived.
“Having MS is really one of the most difficult things to talk about outside the group but within the privacy of JEMS, we can relax and share concerns, new opportunities and treatments that may have come our way.”
JEMS is facilitated by Trisha Ward, together with colleagues from the Community Support and Social Work Team at Jewish Care. She explains “The idea behind JEMS is to provide a safe setting, where confidentiality is respected, to share experiences and concerns and hear from invited experts to the sessions. There is tremendous variability living day-to-day with MS, and this can have a massive practical and emotional impact on lives, families and relationships.
“JEMS consists of all ages and stages, living with what has been, to date, a chronic lifelong condition. We frequently hear how new members feel empowered by the group, encouraging them to strive to get to the right specialists, treatments and where required, that all important funding. Above all, the group’s emphasis is to live life as well as possible.”
The group invite speakers from a wide variety of organisations to discuss issues ranging from welfare rights and accessibility, nutrition, therapeutic treatments, mental health, mindfulness, neuroplasticity, pacing for fatigue and the impact of MS on families, children and carers. They also invite medical specialists and researchers to hear of latest innovative treatments both here and abroad.