Blog from Dr Sandra Neate from the NEU who spoke on this fascinating topic at the Edinburgh Event in June.
Our research at the Neuroepidemiology Unit has demonstrated many beneficial effects for physical and mental health outcomes for people with MS who adopt lifestyle modification. Our experience was that, having observed partners and other support people who attended the Overcoming Multiple Sclerosis (OMS) retreats/residential workshops, partners seemed to gain benefits from both attending the retreat and adopting lifestyle modification themselves. We thought this might be a good area to research.
In this current research we explored the experiences of partners of people with MS who had attended a retreat by interviewing 21 partners. Roughly half of the partners interviewed had also attended the retreat, and the other half had not.
Dr Keryn Taylor and I spoke with partners of people who had attended retreats from all over the world. We wanted to understand their experiences of the day to day practicalities of attempting to adopt the OMS recommended lifestyle changes, what steps they had taken in changing their own lives, and their reflections on how this had affected them as partners.
Results
Partners spoke of their motivations to adopt change. They wanted to support the person with MS but many also recognized the potential benefits to themselves and their families of making major changes.
There were several challenges to adopting lifestyle modification for partners, such as making significant dietary changes, learning to shop and cook differently, exercising, meditating and finding a “new normal” while trying to continue to manage their own life, work, and family. Some partners were completely on board with the changes and others found their own way and adopted changes in a way that worked for them.
Of great interest, many partners identified significant personal gains with their own health and well-being as well as that of the person with MS.
Beyond the practical, partners identified other aspects of adopting change. They found that ridding themselves of negative influences and relationships in their lives was crucial for success and nurturing positive relationships enhanced their lives. This extended to the choice of health care professionals where people sought to find those who provided support rather than negativity.
Conclusion
Partners who made major changes to their lives, such as changing careers and place of residence, to provide the person with MS and themselves a more sustainable, stress-free life, identified major rewards in their physical and mental well-being and a strengthening of relationships.
Adopting lifestyle modification may be challenging for all concerned but our partners described some important major benefits. We thank them for their enormous contribution to the body of research that is beginning to demonstrate that positive outcomes are possible for people with MS and their families.