I recently received a question from a health care journey follower with progressive Multiple Sclerosis asking me a profound question. To paraphrase here is essentially what she asked:
I am a 55 year old woman with progressive MS. I’ve tried numerous disease modifying drugs and either not tolerated them or not benefited from them. I eat well, I exercise regularly and I try to remain positive but I don’t know what else to do. Please provide some advice on what I should do.
Until yesterday I did not know how to answer this question without the usual platitudes. Perhaps I was just feeling down; after all, it is easy to let this disease bring you down when you see people every day wanting answers to questions for which there are none, as of yet. But then I received a copy of Louisa Kasdon’s recent article in the Boston Globe about her trip to China with her husband Michael. Follow the link below to the article and once your read it, you will know what to do.
Michael, who is confined to a scooter with primary progressive MS, used to be a patient of mine in Boston. Louisa and Michael are brilliant, witty, resourceful and lucky to have the means to live well. But these characteristics do not define their success with life or with MS by any means. Despite their own setbacks and tragedies - and we all experience them in life- Michael and Louisa are defined by their dedication to living, savoring every day and every experience. By living within the moment and savoring those moments and relationships, they maintain an optimism and a hopefulness about life that is an inspiration to us all. When Michael was under my care, a typical visit to the clinic usually began with both Louisa and Michael querying me about my family, my health and my happiness, often ending with an invitation to dinner, which I always accepted given Louisa’s exceptionable abilities as a chef and hostess. It was only after they were satisfied that all was well with their doctor that we could proceed with a discussion of Michael’s MS related problems. Following my evaluation, Michael, who is a physicist and engineer, would provide suggestions on inventions or gadgets that could benefit people with physical limitations. I can almost imagine Louisa and Michael inviting the four star general in their story to lunch so they could further discuss ways to help open the exposition they were visiting to more disabled visitors. So read it and try to emulate Michael and Louisa, as I try every day.
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