Monday, June 22, 2009

MS 101

My fellow Ambassadors and I were given a kind of an informational boot camp in MS. Believe me, just when you think you have heard/read it all...

I never feel the need to not listen. I always learn something; even if it is another view on something I'd learned. The most important thing to know about MS is that its affects are different with each patient. The most common "same" symptom, fatigue, is even different from one to an other. The symptoms you have are based on where you have your troubles in the nervous system. If you are walking now, the diagnosis does not mean you will be in a wheelchair soon. If you have eye issues it does not mean the issue will not remit. Stay positive and work with your professional, and the MS Foundation and MS Society to learn all you can about staying as good as you can. They have pamphlets, chat room, and hundreds of resources for answers.

In this last group conference we talked about the different types of MS, and the many medicines we know have to help slow the progression. There is no cure. But everyone in high standings medically agrees, "Start an MS medicine as soon as you are diagnosed." Some even start patients while awaiting a confirmation (to be on the safe side). These are the Rebifs, Copaxones, Beta Seron and Avonex for example.

Did you know there are four, and a debated fifth, type of Multiple Sclerosis? The most common is Relapsing Remitting. This is when the various symptoms come and go and you can take symptom medicines to assist with many. You must discuss each symptom with your neurologist to determine if it is "normal" of MS related then work out a medical or physical plan to help you.

Then there is Secondary Progressive. Here the symptoms flare up more frequently and can be more severe - but again, there are medicines to help ease the effects.

Third is Primary progressive. This is much harder to function with and thankfully affects only about 10% of MS patients.

The fourth is Progressive Relapsing, a serious version that is low in numbers; 5% of patients.

The debating fifth is called Benign. This is when symptoms related to MS come on and then disappear for years. It is considered a "retrospective diagnosis."

More to come

Wednesday, May 27, 2009

Becoming an advocate

Recently I was honored by being chosen as one of The Multiple Sclerosis Foundation (MSF) Ambassadors. We are a group of ten spread out across the US. We will help spread the word about the MSF resources and I will be helping the newly diagnosed find the many resources available to them. The big plan is trying to show MS patients how you can live - even thrive - with an MS diagnosis. My hope is to get the communication started and help others to adapt as comfortably as possible to the new life.

The Multiple Sclerosis Foundation has helped me tremendously. I am so happy to return the favor; or at least try to. As announcements were made about new Ambassadors we were each interviewed by the MSF. Here is mine:

I am now retired due to MS. I am unable to keep a structured work schedule. I was however able to work on Gone With The Wind extras for Warner Bros. 70th Anni Edition due out at the end of this year. My boss at Leva FilmWorks (the company that produces for many of the WB dvd collections) knows I have MS and allocates the time needed for my issues. I in turn, strive to be sure to get exactly what he's asked for from interviewees. So far so good. The infusion of funds helped with the wickedly high medical costs. Plus the work helped my self esteem. The gig also reminded me I made the right decision to leave "the biz." I could not maintain that schedule. As it was I spent a week recouping post shoot!

As I hung up with the MSF on the first Ambassador meet & greet call, I smiled at what this next chapter will bring as far as life memories. Sure I can't do this and that. But I can do. And I chose to.

I have MS, but I am still me and still thriving - if not striving.