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[cancer] Hand, hand, fingers, thumb - Lakeshore
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Jay Lake
Date: 2010-07-13 05:44
Subject: [cancer] Hand, hand, fingers, thumb
Security: Public
Tags:cancer, health, personal
My oncologist had warned me that even as I was recovering, my peripheral neuropathy might get worse. Apparently the nerve damage associated with PN is slow to occur, and slower to heal. As in, something between years and lifetime, for some patients.

My cold sensitivity has mildly improved, which is a related issue. I no longer get the bone-in-throat sense of choking from foods or fluids at refrigerator temperatures. Ice cream and other freezer temperature foods are still very difficult, mostly because my back teeth and lower jaw still retain their painful sensitivity. In other words, I can consume cold foods if I don't have to masticate them with my molars. Thankfully, my overall ability to taste has largely (but not fully) returned, and my mouth sensitivity is receding rapidly.

Likewise, my sense of my core temperature is improving a bit. My body simply doesn't feel as cold, and I'm starting to notice when I'm warm. My feet have not improved, but neither have they worsened. Still cold and numb, still have a bit of trouble balancing and walking.

But my hands. Ah, my hands. They have continued to degrade. The sense of being freezing cold is very nearly constant, unless I have them under running hot water. My fine motor control has gotten fairly poor. I make an incredible number of typos from simply not hitting the key I intended. I have to try two or three times to dial telephone numbers, especially conference calls with entry codes, because my finger doesn't hit the right phone buttons. I click on the wrong icons on both the Mac and the PC, launching unwanted applications because my mouse control is increasingly lousy. Also finger and hand strength has faded, a lot. I can no longer open jars except with significant difficulty, nor can I manage flip-tops on toothpaste and lotion tubes.

I'm still typing, which is the most critical thing, but this loss of hand functionality is starting to make me batty. Everything else is either holding the line or improving, but hands are going to hell in their own private handbasket. And it's damned icy there.

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Eva Whitley
User: wouldyoueva
Date: 2010-07-13 13:19 (UTC)
Subject: (no subject)
Is some kind of occupational therapy an option for you? It sounds like things needed to be modded for you.
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Jay Lake
User: jaylake
Date: 2010-07-13 13:25 (UTC)
Subject: (no subject)
Depends on how much worse this hand thing gets. I'm still functional, but approaching borderline on a lot of issues.
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e_bourne
User: e_bourne
Date: 2010-07-13 14:28 (UTC)
Subject: (no subject)
Everyone's stupid neuropothy is different. However, shat we have learned is that, now that Mark is walking more, he is experiencing more neuropothy in his feet than he did when he wasn't able to walk so much. Go figure.

It may be your hands are reacting the same way. You just banged out a hell of a lot of words. A hell of a lot of typing on top of day job. A lot of hand work. That could be stimulating the nerves more, which is causing you to feel it (not feel it) more.

I don't know if that's it. It just sounds similar to what we're experiencing on the foot side as Mark is now walking more and doing more strenuous walking (hills, woods) as well.

We believe it will go away. He is better now that he was. But dude, I hate to say it (cringe) it took a freaking year to get to this point. And he still isn't able to life his arms over his head very well.
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Jay Lake
User: jaylake
Date: 2010-07-13 15:23 (UTC)
Subject: (no subject)
Yeah, I've been told recovery could take a couple of year, or this may be permanent. I know you can imagine my pleasure at this prospect.
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Jay Lake
User: jaylake
Date: 2010-07-14 14:11 (UTC)
Subject: (no subject)
Long and slow, like good sex or a bad meal. Sigh.
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Keikaimalu
User: keikaimalu
Date: 2010-07-13 15:13 (UTC)
Subject: (no subject)
Bummer -- sorry to hear it.

Have you ever tried speech recognition software for writing? I used Dragon NaturallySpeaking for a while a few years back, partly because I wanted to improve my diction while reading aloud, and partly because I was able to write a bit faster that way (even though I'm a fairly fast typist). I wonder if something like that might be useful for a while for you. Accuracy is nowhere near 100%, but if you get a version that has a playback feature, you can figure out what you actually said and correct speak-o's that way.

I hope the hands improve soon.
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Jay Lake
User: jaylake
Date: 2010-07-13 15:20 (UTC)
Subject: (no subject)
As I said to mindyklasky below, the problem with dictation is that I don't talk *anything* like I write fiction. I wouldn't be surprised if a brain scan showed two active language centers for me, one in speech, one in fiction writing. (My business writing is much closer to my spoken style.) So dictation would essentially be a whole new type of writing for me. Which if I need to, I will, but I'd prefer not to.
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Mindy Klasky
User: mindyklasky
Date: 2010-07-13 15:13 (UTC)
Subject: (no subject)
To the extent that your post is a reference point, and not a request for suggestions - I'm sorry that you're experiencing these problems. If you're looking for some suggestions...

I'm sure you've already thought of this, but would a speech-activated system like Dragon help? And/or some specialized tools for people with sensory impairment?

(Our local medical supply store had a number of adaptive implements which proved invaluable for a relative suffering from diabetic neuropathy - things like better grippers for opening bottles, telephones with large-sized buttons, computer mice with a variety of different configurations and buttons...)
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Jay Lake
User: jaylake
Date: 2010-07-13 15:20 (UTC)
Subject: (no subject)
The problem with dictation is that I don't talk *anything* like I write fiction. I wouldn't be surprised if a brain scan showed two active language centers for me, one in speech, one in fiction writing. (My business writing is much closer to my spoken style.) So dictation would essentially be a whole new type of writing for me. Which if I need to, I will, but I'd prefer not to.
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User: joycemocha
Date: 2010-07-13 15:27 (UTC)
Subject: (no subject)
I have a horse liniment gel that might be helpful. I'll loan it to you today, if you like. It may or may not help--it was very helpful to me during the winter.
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Lawrence M. Schoen: LEGO
User: klingonguy
Date: 2010-07-13 15:33 (UTC)
Subject: (no subject)
Keyword:LEGO
The cruel irony (which other people are too sensitive to post, but hey, we all have our niches to fill) is that if only you could masticate more, the resulting hair growth on your palms would keep them warm.
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Ramblin_Phyl
User: ramblin_phyl
Date: 2010-07-13 15:59 (UTC)
Subject: (no subject)
Don't know if hot wax dip is too dangerous because you can't sent went it's too hot, but I find it helps relax the bone deep cold of arthritis on winter mornings.

there is always the last resort of voice recognition software, which I use mostly in the winter. It's slow and takes time to learn your voice and style. The more you use it the faster it gets. Still requires editing and hand formatting of some things like smart quotes.

Sometimes I just have to stop a moment, take a deep breath, and try again in a more deliberate style.

In all, it sucks when your writer mind is faster and more coherent than our bodies and interaction with tools allows.
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martianmooncrab
User: martianmooncrab
Date: 2010-07-13 18:09 (UTC)
Subject: (no subject)
There are some really cool openers, I have a couple for popping the seal on a jar, which helps a lot.
Plus Black&Decker has the most kickass electric jar opener ever.
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Jay Lake
User: jaylake
Date: 2010-07-13 18:12 (UTC)
Subject: (no subject)
Linkies, by chance, on any of those products?
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martianmooncrab
User: martianmooncrab
Date: 2010-07-13 18:52 (UTC)
Subject: (no subject)
this site has a bunch of tips, plus it shows the jar popper

http://yawa.arthritisnsw.org.au/hints.html

and for the Black n Decker

http://www.aging-parents-and-elder-care.com/shopping/elderly_kitchen_aids_1.html
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Msconduct
User: msconduct
Date: 2010-07-13 23:20 (UTC)
Subject: (no subject)
I don't know how you feel about acupuncture, and I'm sure it's annoying when people shove miracle cures at you, but I will mention this just in case: one of the things acupuncture is recommended for is for dealing with the fallout of chemo. A friend, who hadn't had chemo but who had problems with core temperature and also with nerve damage following an accident, had excellent results with this. Her intense inner cold normalised with three treatments and she regained normal feeling in the numb patch on the top of her head which had been there for more than five years (her neurologist had told her that after three years you don't get any further feeling back). This study in the European Journal of Neurology found acupuncture had significant benefits for subjects with peripheral neuropathy:

http://www.ncbi.nlm.nih.gov/pubmed/17355547

If acupuncture's not your thing, it's not, but I would hate not to mention for your consideration something that might help.
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