Sunday, October 29, 2006

Hard Times

As I was walking over to a building I saw my reflection in one of its many windows. I gave myself a funny look. Who was this withered looking girl hobbling down the sidewalk? Surely this girl couldn’t be me. I tried to shake the image from my head and kept on walking, refusing to look at any more windows.

Finally I made it into the building. I was there to see a Shakespeare play (Julius Caesar) with a bunch of other people from my school. I soon located my group and waited to be led into the theater. Suddenly I was reminded…stairs. Theaters tend to have stairs! I maneuvered my way over to one of the head teachers (all of the school faculty know about my CMT). I told him that I was expecting stairs in the theater and asked him to make sure I survived them. He was very kind and happy to oblige, and explained that you had to go downstairs to get into the theater. This was great news! Going down stairs is so much easier! For some reason at the time my brain didn’t make the connection that this meant I’d have to go back up the stairs when the play was over.

The play finished. I’d enjoyed it. Then the realization of the “stair-situation” struck. Uh-oh. I was only four rows from the bottom too. As a man called out the schools one by one to leave the theater, I scanned my eyes up the stairs; the stairs weren’t too high, but there were a lot of them. Then I heard my school’s name called. I made it up a few stairs and then my legs just quit--I couldn’t do it. Luckily one of my school’s head faculty saw my dilemma and came over to assist me. I don’t know what I would have done without her, maybe I would have had to crawl up the stairs. She let me lean on her and almost pulled me up the stairs one by one--it was still a long trek, and I swear I heard some guys a bit of a way behind us saying “MOOOVE!”. She said I’m a real trooper.

So I made it through, but it was very emotionally and physically frustrating/stressful.

I cried myself to sleep last night. I’m scared. My walking is continually getting worse, and to be honest, I worry about how much longer I’ll be able to walk at all “reliably”. Today I couldn’t walk without pain. I feel like I’m just watching my body disintegrate more and more each day. Today I also got some excruciating chest pains, that lasted well over an hour. They started in several places around my chest/upper stomach, and then settled in the middle of the top of my diaphragm. It felt like someone was stabbing me with a knife over and over, and some trouble breathing came with it. I honestly don’t know what it was from. It could be CMT, as I’ve heard several times that CMT can cause breathing difficulties and chest pain. Either way, they worry me.

I’m starting to look for a really good CMT doctor. If anyone knows of one, please let me know. I’m looking for someone who will really work with me, and knows what they’re talking about. I’ll be doing a lot of research on doctors and I’ll post any interesting results I find.

12 Comments:

At 3:30 PM, Anonymous Anonymous said...

Char, if you have not yet done it, it is definitely time for AFO's. They limit shoe choices, that's a fact, but the falls and stair problems are much less with them.

Now let me tell you what happened to me a couple of years ago, even with the AFO's. I laugh now, but at the time it was scary. My aunt and I went to see Harvey Korman and Tim Conway (from the old Carol Burnette Show). It was at a theatre and our seats were in the balcony. Yikes! I called in advance and asked about elevators and was promised there were some. Guess what? No elevators! I had to take an escalator..."UP" was great, "DOWN" was not. My knees buckled, my feet went out from under me and I fell flat on my butt on the "down" escalator, leaving my aunt to yell "help, somebody help!" at the top of her lungs. Several people ran to my rescue, just as I was having mental pictures of being sucked in at the bottom of the thing! Give me a set of stairs any day -- one step at a time is better than decending an escalator on my back.

In the future, pay no attention to the people behind you. Take those steps slow and easy & be safe... and stay away from escalators!! :-)

 
At 3:39 PM, Blogger Char said...

Bonnie,

I definitely plan to try them out sometime soon. If they could help with that, it seems it'd surely be worth it.

Aww, that would be scary! I guess you learned something though, stay away from elevators!
CMT definitely gives us some "funny" (later at least) stories to tell.
Thanks for sharing :)

I try not to, but there's part of me that can't help but feel bad/be embarassed. I guess I do just have to focus on getting up safely.

 
At 3:49 PM, Blogger Char said...

Oh, and Bonnie, I have a question for you and any other AFO users. I realized that one reason I have trouble walking in shoes is that I've started walking on the sides of my feet, so I kind of fall off my shoes (making it impossible to stay standing). Do you know if AFOs would do anything for this?

 
At 3:57 PM, Anonymous Anonymous said...

AFO's definitely help me in that. I don't wear my shoes over the way I did before. (That was caused by the same problem you have with walking on the sides of your feet.)

 
At 4:00 PM, Blogger Char said...

That's very good to hear.
So you don't wear shoes with them..?

 
At 4:08 PM, Anonymous Anonymous said...

LOL! Sure I wear shoes with them. The thing is, the AFO's tend to hold my foot in place better, so that they don't turn over. My problem with them is that when I first take them off the muscles in my feet and legs feel like they are "relaxing" and that can be a bit painful for a short time, but it doesn't last too long.

 
At 4:13 PM, Blogger Char said...

Oops, I misunderstood :-p
I see. They definitely seem like they have a lot of advantages.
It's probably a lot of "work" for them to be in the positions the AFOs keep them in.
Thank you for the info :)

 
At 7:06 PM, Anonymous Anonymous said...

Char,
So nice that you have this blog. I'm 25, found out I had CMT at the age of 18 and unfortunately, it doesn't seem to get easier to deal with. I was sitting here reading your blog and thinking about how it honestly sounds exactly what I would write. I do have AFO's, but I don't wear them. I wear boots because they seem to give me enough support....think about explaining why you're wearing boots when its 80 degrees outside!!
Anyway, thanks for being so honest about the way you feel...Its refreshing to read about someone who feels the same way as you do

 
At 3:31 AM, Blogger Char said...

Hi, I'm glad you found my blog :)

People have been asking me why I'm still wearing sandals in 40 degree weather! - so I totally understand.
Have you found a specific brand of boots works well?

Thank you, I hope to hear from you again.

 
At 9:41 PM, Anonymous Anonymous said...

I was sitting here trying to think of something profound to write. Something intelligent and filled with answers to questions. Something to express how totally proud I am of you and how much I value our friendship. You're changing MY life now, and only for the better!
Unfortunately, all I have is words of encouragement...nothing tangible, no magic solutions, nothing profound...

 
At 1:51 PM, Blogger Char said...

Aww, that is so sweet and lovely!

Thank you so much :)

Words of encouragement are like magic.

 
At 10:28 PM, Anonymous Anonymous said...

I too have AFO's, I have had them for 5 years and they really have helped a lot, until this past year when my health took a big dump.

I have a lot of trouble with stairs now, in fact I have a couple of friends and family members that I can no longer go to their houses, because of the stairs. Those old farm houses are terrible for stairs and no handrails to help.

I don't know where in Mich. you live, but I'm just across Mich. line in Toledo, OH area. I have a wonderful neurologist and also there is a MDA clinic @ Toledo Hospital Drs. building and that neurologist is very nice and knowledgeable.

Connie

 

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