Tuesday, February 7, 2012

Post 46 - Some Things I'd Like to Change

Having MSA means adapting to many life-altering changes – all of which require varying degrees of effort on the patient’s part. Some of these changes alter one’s life in the extreme - like difficulty swallowing, while others - like being easily startled, amount to nothing more than inconveniences. Whether major or minor, each symptom – and the patient’s response to it, has a life-changing effect. While I’m aware of many changes I’ve had to make over the past few years, there are several I wish would have turned out differently.

First, I really wish I had better balance, at least good enough to allow me to take a walk without the risk of falling. I really miss one of life’s little pleasures, especially since my condo, and, in fact, the whole city is so conducive to walking. It’s just not the same in a powered scooter or wheelchair.

Next, I’d like my voice back the way it was. Right now I’ve been reduced to a series of mostly unintelligible grunts and other noises. I can be understood, but it really takes a lot of very tiring effort to do so.

I also want my penmanship back, especially my signature which is now just about unrecognizable. I used to pride myself on my legible and neat handwriting – now it’s nothing but chicken scratch that even I can’t understand.

I would really appreciate some more manual dexterity. I’d really like to tie my shoes again and button my shirts without relying so much on Fran (who never complains or makes me feel disabled). Maybe I’d even be able to type one of these posts without making so many mistakes and taking so long time to correct it.

I’d like to change lots of other things while I’m at it but they’ll have to wait for another time – I don’t want to seem too greedy.

Lastly, Happy Valentine’s Day to all the wonderful girls in my life!

3 comments:

  1. Difficulty swallowing, oof. I've experienced that and it can make eating pretty difficult. I went online and read that sometimes warm water was easier to trigger the gag reflex than cold water (not sure if true) or that deliberately swallowing helped. I'm still trying to see what types of foods make this easier. Maybe you can write about the adaptations that have helped, for future readers?

    Sending a hug of support through the intarwebs. You're dealing with something completely out of your control so gracefully and still with appreciation and honor. That's beautiful.

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  2. Happy Valentine's Day to the best dad in the whole wide world! No, make that the entire galaxy.

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  3. Hi Steve, I 'discovered' your blog this morning and just want to say hallo to a fellow MSA blogger. I also share that symptom of being startled easily -jump out of my skin when the phone rings etc! Regards, Sonja
    http://msainsouthafricawithsonja.blogspot.com/

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