Monday, May 6, 2013

I’m An MS Activist

Mike Burns

You might call my wife, Kristi, and I a “Hollywood” power couple. I spent six years in the 80s (of my 20+ years in the industry) working on one of the most popular sitcoms of all time, “The Cosby Show.” Kristi is a professional voice-over artist, best known as “the voice of time” on the Food Network’s “Iron Chef America.” But… we no longer live in Los Angeles. In 2007, seeking a place that was quieter, slower and more family-friendly, we packed up our four kids in the car and moved to Spokane. Since I had been diagnosed with multiple sclerosis in 1997 and the LA heat had the potential to exacerbate my symptoms, we were also seeking cooler weather – we found it!

Immediately after my diagnosis, I took up video editing (a “sitting” profession) out of fear that I’d be dependent on a wheelchair within the coming year. I still do some editing and contribute to three video companies, but more and more I’m focused on raising my kids, fishing and speaking about what it’s like having MS at various local National MS Society events. I am not dependent on a wheelchair – I’m proud to say that my MS has been successfully controlled by treatment.
U.S. Representative Cathy McMorris Rodgers
and MS Activist Mike Burns

In the years we’ve lived in Washington, I’ve also found my way as an MS activist. Initially the Society invited me to the capital for a State Action Day; I really enjoyed meeting my representatives and I take pride in being a voice for people with MS. Though I’ve been fortunate that the disease hasn’t taken my ability to earn an income, others have not – this story needs to be told. So last month, I met with U.S. Representative Cathy McMorris Rodgers of Washington’s Fifth District while she was in town on recess. A local Society staff member and I presented her with an award as the Society’s Representative of the Year, its highest honor for public officials. Representative McMorris Rodgers is recognized as a leader on disability issues by members of both sides of the political aisle.

I started the meeting by talking about my experience with MS. Then we provided details on several important issues including the Lifespan Respite Care program (she supported the Lifespan Respite Care Reauthorization Act), funding for the Food & Drug Administration (which reviews each of the new MS treatments), and finally funding for medical research and some of the exciting current MS research – which seemed really important to Representative Rodgers – as it is to me. The Society staff member also encouraged Representative Rodgers to attend the Spokane Walk MS event.

It was wonderful to finally meet Representative Rodgers in person, as I’ve been in touch with her for several years through personalization of Action Alerts and other emails. That’s what activism is all about – building relationships so that we can call on our public officials when we need them. You can be an MS activist too, even without visiting your representative in person – it’s easy to sign up for the Society’s advocacy updates and action alerts and to get engaged via social media. What will you do to make your voice heard?

6 comments:

  1. Great article Mike. I like how you pointed out that MS can affect individuals and their ability to earn an income. As that happens, it can also happen to spouses to those have MS. My wife has RRMS and I have had to change jobs on a couple of occasions. Since I need to be at home regularly, I cannot pursue my former career anymore since it required a lot of travel. In addition, if it wasn't for FMLA, I would have probably have lost my current job. It's hard to balance a job, taking care of wife when she has a relapse, taking care of a house and 4 children. But I do what I need to do to take care of them. It's been hard, especially with employment gaps, but we have managed so far. Thank you for touching upon that.

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    1. Whoops! I mean I am NOT BOGGED DOWN ANYMORE!!! LOL

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  3. Mike, I was diagnose with PPMS just over four years ago. Prior to being diagnosed I was a stay at home mom for 12 years. Shortly after being diagnosed my marriage broke up, I went blind in one eye, and my mobility was greatly reduced. I live in Ca and because I haven't worked in years I'm not eligible for ssi. My only choice for a while was cash aid which amounted to under 700$ a month to support myself and three kids. People have such a small understanding of MS and especially the more rare forms. Something needs to be done about it. I'm an educated, strong woman who has a disease that I didn't ask for. Yet I have had the humiliation of not being able to support my own children. Please use that voice of yours to speak up for those of us who have the worst case scenario with this ugly disease.

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    1. It is really difficult, Mike, when healthy individuals who contributed to their country, cannot depend upon that country when they are in need; however there are many who mooch off the system when they have not contributed to it. Help needs to be given in your local environment, even if it is through government assistance. Sorry to say, this has not happened and with the man illegally holding the presidency of this country, it will never happen. So you do what you can, but then with 4 children, the edge of the cliff looks kinda good, but only to you as it does cause upset and anger with those you leave behind. I have had MS for a few years and have only my SS of $910 per month to live on. I have no one to share living cost and my only variable is the grocery store which has been replaced with the food bank. Even locally I find people are skittish about giving money to even those who are close friends, but will give to the local organizations. I feel for your problem and I wish I could help you, however my earning years are over and I talk every night to my God to take me home. It hurts a lot, it really does. Good Luck to you Mike, I have no answers.

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  4. I live in NYC, should I say more? : )
    Paid US taxes for over 35 years.

    I also do some digital work when I can and have assignments.

    Laurentiu (MS diagnosed in 2010, after a long struggle)

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