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Monday, July 2, 2012

Reflections on Multiple Sclerosis, an Enigma

It's my fifth year anniversary of living with the knowledge that I am diagnosed with multiple sclerosis. If you've read my book, you know that I'd had symptoms of something long before I had a diagnosis. I'm going to feature this book for this week, and offer the discount I've been offering week by week for other books of mine. But I first want to talk about multiple sclerosis: not about the diagnosis, and not about the "treatments." I want to talk about the disease itself, and about some of the people who are involved in the fight against it.

Recent news articles have revealed that Jack Osbourne has been diagnosed, and that his mother, Sharon, has shared her feelings about her son's diagnosis. People Magazine ran a headline on its cover, quoting her as saying "I will not let my son die!"  That headline misrepresents multiple sclerosis as a killer; while some who have primary progressive multiple sclerosis do, in the end, die of complications involving their autonomic systems such as breathing, the disease does not "strike young people down" and immediately cause death. It does strike them down in terms of mobility and other critical life functions. For many people with multiple sclerosis (sometimes referred to as PWMS in the literature) vision is a susceptible loss, in some cases permanent but in many more transient. The utter unpredictability of multiple sclerosis damage and symptoms is what provokes anxiety and depression in those who have it, and those conditions also cause a host of others: insomnia, loss of appetite or emotional over-eating and weight gain, loss of self-worth and initiative, and often loss of employment and income.
Types of MS
Types of MS (Photo credit: Wikipedia)

Another person in the news is Mitt Romney's wife, Ann, who has lived with multiple sclerosis for a long time, and has spoken of her challenges in physically keeping up with the presidential campaign. She has also borne some criticism for making multiple sclerosis look easy.

For both of these PWMS, money and lifestyle certainly are factors in choosing their treatments, while many others are struggling to make ends meet, having lost their chosen employments due to weaknesses that stem from the symptoms of multiple sclerosis. The expense of treatments is high, and differs in the United States depending on an individual's health insurance policy's caps and co-pays.

To whom do PWMS turn for advocacy, assistance, and advice? The National Multiple Sclerosis Society has run campaigns for years in an effort to raise money for research funding. They also fund advertisements to raise awareness for multiple sclerosis, and maintain a website that hosts videos offering explanations of the symptoms via interviews with patients and doctors alike.

I learned recently that forty-five  years ago, while I was a senior in high school and then a freshman in college, Barbra Streisand made a video on behalf of people with multiple sclerosis. I then checked on Facebook, but found she has moved on to support Women's Heart Health. There are others who are working to raise awareness of multiple sclerosis and of the need for funding toward a cure.

I'll post more this week on multiple sclerosis. It is an enigma: no one understands the cause and so their 'treatments' are all a shot in the dark (pardon the pun.) But I want to remind you that you can buy Multiple Sclerosis an Enigma for half price at my webstore this week. Getting it there guarantees that you will receive an autographed copy (personalized if you wish). It will also be half price at CreateSpace (with the discount code of Y8CV2CHT), and at Smashwords (their discount code is CZ73A)

And here is a recent review of Multiple Sclerosis an Enigma, posted at our page at Facebook:

From Catherine Mahoney:

"This story is a honest look inside the world of a multiple sclerosis patient and woman trying to adjust to the MonSter.It is a good beginner's guide about plotting through the world of auto immune diseases.

She is honest and refreshing sharing her thoughts with the readers and tells the pros and cons of this vague disease. She has a strong support system and knows how to advocate to the physicians for the treatment all ill individuals deserved.

I like the upbeat positive attitude she is developing along her journey to transform her life from a Type A personality to a mellow lady with I do not care attitude and lives for each day.

She was brave enough to put in the Almighty's hands and release herself from Western medication and looking for an better approach to deal with the symptoms of loss muscle and cognitive capabilities.

She explains how it affects her and her husband and the adjustments they made to learn how to dance and not be furious with a personal storm some of us experience everyday.

Kudos for sharing your experiences and trials with others who might have just received the news "You have MS". This is a good book to start to comes to terms with the diagnosis of any autoimmune condition."
Thank you, Catherine!

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