I am so excited!

I just received an email from someone who actually saw my television interview about CMT on my local news channel 13, WNYT. My TV debut aired on December 19, at approximately 8:45 am on a Sunday morning. I thought, who’s going to be up that early on a Sunday morning watching TV, other than my family and a few close friends, whom I alerted to this momentous occasion. I planned on being in Florida and needed someone to tape it. 

Public speaking in any form is my worst nightmare to the extent that, I almost dropped out of pharmacy college in freshman year after learning of the assigned speeches, to be delivered in front of the entire English class. To make matters worse, the professor videotaped these dreaded ramblings for our viewing pleasure on the next day. I suppose the intent of forcing me to watch my cringe worthy attempt in addressing the class was to learn from my mistakes. However, seeing myself visibly shaking with my head down making no eye contact, and hearing this feeble, high-pitched, mousey squeak in place of the voice I expected, stole any remaining confidence within.

So, why did I agree to this interview? It took 47 years before I was diagnosed with CMT, even though my symptoms began in childhood. Although CMT is the most commonly inherited peripheral neuropathy, most people, including the medical community, have never heard of it. Also, Tom, retired from the media business, who I met at the Upstate NY CMT meetings, helped set up the interview with his connections to health reporter, Benita Zahn.

I emailed Benita requesting an idea of possible questions she might ask, so that I could prepare.  Benita emailed back, “Don’t worry! We’ll just sit down and have a conversation.” So, I practiced presenting an overview of CMT, mentioning symptoms that were challenging me. I even persuaded my friend Christine to phone me, interviewing me pretending to be Benita. It did not go well. With visions of that disastrous performance in freshman English still haunting me, I quickly became tongue-tied tripping over my words.

Nevertheless, this interview was too significant to screw up. It was crucial to me not to look like a nervous nitwit. More importantly, I owed it to Tom and my CMT group to do a good job getting the information out there.

Of course reviews from family and friends as expected were complimentary. I however, noticed my silly grin when discussing falling on my face and my nonstop tapping foot betraying my nervousness.

Now, a few weeks later the stress of speaking on TV has subsided, and receiving the email, mentioning the interview asking for information, encourages me. Already I’m thinking I know I will do better next time. http://www.wnyt.com/article/10112/

 

Fibromyalgia

This article on adapting to  fibromyalgia,  written by my sister, Jana Murrell-Maxfield, gives advice that works for CMT as well.

 

Adapting  to Fibromyalgia

Over time, I changed my focus from trying to find out what was ‘wrong’ with me and what made me feel worse to discovering what helps me to feel better and incorporating more of that into my life. I put my problem solving abilities to new use, finding new ways to do things to better meet my needs and adapt to life with fibromyalgia.

 

Practical Solutions

I found that different types of activity, mental and physical, had different degrees of effect on my health. For example, certain kinds of kitchen work, like standing and chopping lots of veggies, are harder on me than others. The longer I stand in place or the more repetitive my movements are, the more quickly I experience pain and fatigue. But I can space the activity out and not chop all that I need at one time. Or I can take some work out of my standing-room-only kitchen to do sitting comfortably on the sofa.

read more

reprinted with permission of author Jana Murrell-Maxfiled


 

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Gallery | This entry was posted in Charcot-Marie-Tooth disease, Health CMT, neuromuscular disease, peripheral neuropathy and tagged . Bookmark the permalink.

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