Over the past few weeks, we have learned from Jane’s story that life with MS can be unpredictable and challenging at times. This week we look at Jane, now 25 years since her diagnosis, as she shares the community of support that helped her each step of the way.

Secondary Progressive MS

Twenty years after her diagnosis, Jane’s symptoms were worse and she was recovering less between attacks. She now had Secondary Progressive MS (SPMS), a different course of the disease than she was diagnosed with initially.

Ninety percent of people diagnosed with Relapsing-Remitting MS will develop SPMS within 25 years. SPMS is characterized by less recovery following attacks; persistently worsening functioning during and between attacks; and/or fewer attacks accompanied by progressive disability.

Accessing resources through the MS Society

Though Jane’s employer was supportive, she eventually decided to leave work due to cognitive issues. Unfortunately, her husband was then laid off and they had no income or health insurance. When Jane contacted the local MS Chapter for help, the Information Specialist recommended care management services through the Home LINKS Program to help her access local programs that could provide support.

With input from Jane and her husband, the Care Manager created a “care plan” which identified issues including:
• Financial concerns
• Insurance
• Occupational therapy evaluation
• Wheelchair
• Isolation

The care manager worked with Jane and her husband for several months researching programs, helping with applications, and stabilizing their situation. Jane also applied to the Chapter’s Financial Assistance Program to help pay for vehicle modifications, which increased her independence.

Becoming involved

Once their situation was stabilized, Jane wanted to get more involved with the National MS Society. After such a stressful year, she had fun with her family at the Chapter’s Holiday Party and her daughter was able to meet other teens who have a parent with MS.

Dawn Russo
Dawn Russo, Senior Program Manager of the Greater New England Chapter of the National Multiple Sclerosis (MS) Society, guest Blogger

Motivated by this feeling of community, Jane reached out to friends and created a team for the MS Walk. Her team now has 20 members and enjoys a great day walking together to fight MS. Jane feels optimistic knowing she is helping to contribute to the almost 325 individual research projects worldwide supported by the Society.

Next week we will introduce the wealth of resources available on our website at www.msnewengland.org . You will also learn more about how you can join us as we move forward toward a world free of MS.