Article: Bye-bye nerves
Do you know NF is often times very emotional? Mom bought some mooncakes yesterday. Green Tea flavor, my favorite. I have been looking forward to Mooncake Festival, but when I finally munched on a slice, I was saddened by the fact that it tasted nothing more than plain paste.
A blog reader recently said she would buy me some and asked what flavor I’d like. I said Green Tea. But now, it is better for her to bless someone else.
Every year, I must learn to let go something.
When I eat ice-cream, I enjoy the cold, creamy texture, but not the sweetness.
When I eat cream puff, I taste the creamy diary texture, but not the sweetness.
When I drink Ice Lemon Tea, I drink to sooth my thirst, without tasting the sweetness.
When I drink coffee, I add sugar for extra energy. It changes the coffee aroma, but I cannot taste the sweetness.
And now… no more mooncakes.
I cannot tolerate much salt either.
I must remind myself that this is already a lot better. I could taste nothing at all last November.
My Aunt Ivy was very brave. She could taste nothing at all after chemotherapy. She never complained, but I could see she was sad.
These days, I am often reminded of my Aunt Ivy. My life is becoming so much like hers.
The nerves are such a unique creation. My inability to taste well is caused by nerve damages in the brain, not at the tongue. Similarly, I fall because of nerve damages in the spine, not the legs. It has to do with nerve impulse interruptions, from brain, spinal cord, peripheral nerves, and finally to the muscles, that I cannot even break my fall. So please don’t ask me to use a cane, because people who use a cane to walk have healthy nerves.
It hasn’t crossed your mind that a lot of mental processes take place in order to benefit from using a cane has it? When you fall down while holding a walking stick, the stick itself does not save you, your ability to break the fall does.
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” When you fall down while holding a walking stick, the stick itself does not save you, your ability to break the fall does. ”
wow..great words friend.
I really miss you Yvoone lol. had great Sunday with you.
Take care dear!
I miss you too! We should do something someday.
I understood how you feel absolutely. Even when the most delicious food put in front of me also no use because I couldn’t taste anything. Feel like crying also. So torturing.
We have to learn to accept it and not look back.
Dear Yvonne,
I wouldn’t write off the utility of a cane (properly fitted) without trying it. I realize it can be annoying for anyone to assume there’s some magic fix when our bodies just give out at times. For the longer haul, though, a cane gives us an extra, dependable point of contact so that the muscles and nerves that are still functional may pick up some of the slack of those that aren’t. It takes time and practice, of course, for our brains to adapt and re-adapt, but why not be open to the possibility, rather than outright dismissing it? I agree with you that it takes a lot of mental work for a cane, or anything, to assist with mobility. That’s why practice and repetition are so important; to facilitate efficiency and effectiveness. (Yes, it’s exhausting… and rewarding.) Considering the lack of success in anything breaking falls, I think it’s best to aim to prevent falls. It’s certainly not any kind of instant fix. I believe you will discover methods to compensate for nerve/signalling interruptions. I have extensive muscle wasting and severe NF2 and appreciate the individualized adjustments we have the opportunity to explore experientially. I don’t mean to detract from the feelings you have and respect your decisions for yourself, I just want to encourage you to keep the open mind that’s gotten you this far so you may discover whatever works. I root for you!
Thanks for sharing your perspectives and travel experiences! Great pics, too. Wish you all the best!
Hugs, Jamie
Hie Jamie. Thanks for sharing your perspective too. Maybe every NF condition is different, but I am otherwise okay walking if not for the sudden lack of limb control when it happens. And when it happens, we fall no matter what we are holding on to. And since I don’t need walking aid in my everyday life, it’s odd to use one now. In the times when I fell, I was often holding onto something, but that did not stop me from falling.