Old 03-12-2018, 04:04 PM #1 (permalink)
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Default Lastest aggravation

Lastest aggravation for me is the “ itch”.

Seems like just when I git close to any kind of comfort the infamous “ itch” appears.
Usually in places I can not git at and so another cry for help .

This nightmare never lets up and certainly not for my cals who is a saint!
I am at the mercy of a good scratcher.
Anybody else like this?
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Old 03-12-2018, 04:21 PM #2 (permalink)
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Default Re: Lastest aggravation

I think this is one of the cruelest parts of ALS. It seems so trivial but it drives you crazy. Yes my sister had this and it was miserable. One thing that slightly lessened the issue was exfoliating . Getting rid of those dead skin cells can help. You can’t do that everywhere of course but every little bit of relief counts
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Old 03-12-2018, 04:25 PM #3 (permalink)
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Default Re: Lastest aggravation

Hehe, my boyfriend is just warming up to be aggravated by this, too. Bad for him, I scratch with the sloppy abandon of a labrador. Congratulations to your saint!

Nikki, that's so true. The small stuff matters and will really impact on quality of life. I don't know how my PALS does it, I'd be a screaming fury. I scratched my face maybe four times just writing this post.
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Old 03-12-2018, 04:31 PM #4 (permalink)
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Default Re: Lastest aggravation

To CALS: I have some exfoliation gloves that I use in the shower. You can get them on Amazon but the better ones are at Bed Bath & Beyond. I think these are a must for me now. Last summer I never recovered from days in the sun and pool. My legs dried out so now I need to exfoliate them while wet, then apply coconut oil and cover the oil with unscented lotion to seal the moisture in. When I go a day without doing this, the dry skin starts coming back. It does itch.

For a disease of the motor neurons, there is sure a lot of sensory issues to deal with.
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Old 03-12-2018, 04:32 PM #5 (permalink)
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Default Re: Lastest aggravation

Nothing worse than waking up in the middle of the night to itching on your feet and not being able to scratch. Do I wake my husband or tough it out?
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Old 03-12-2018, 04:39 PM #6 (permalink)
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Default Re: Lastest aggravation

I use a cheap exfoliate glove myself for years and started to scrub my PALS with it too when taking showers. More dexterity in the fingers than with a washcloth is another plus. So far I've not been woken because of itchyness. Either it works or he's a good one at toughing it out.
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Old 03-12-2018, 06:38 PM #7 (permalink)
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Default Re: Lastest aggravation

Quote:
Originally Posted by chally View Post
Lastest aggravation for me is the “ itch”.

Seems like just when I git close to any kind of comfort the infamous “ itch” appears.
Usually in places I can not git at and so another cry for help .

This nightmare never lets up and certainly not for my cals who is a saint!
I am at the mercy of a good scratcher.
Anybody else like this?
Whadda do when your manberries or turdcutter itches?
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Old 03-12-2018, 06:50 PM #8 (permalink)
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Default Re: Lastest aggravation

Moisturise, Moisturise, Moisturise !

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Old 03-12-2018, 09:05 PM #9 (permalink)
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Default Re: Lastest aggravation

Hey mark,
Corn cobs for the turdcutter and “ happy endings for Johnston “
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Old 03-12-2018, 09:09 PM #10 (permalink)
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Default Re: Lastest aggravation

Definitely there is a skin issue with ALS and we still don't know why.

For my Chris - the dry itchy patches of skin started a year before his bulbar issues and you had to know what amazing soft skin he had (really you can make jokes but it's true)

I too don't know how I would be if I couldn't scratch itches, I was always very happy to do this for Chris.

The exfoliators are great and important as is moisturising but carefully so you don't get the other skin issue that is so common with ALS which is fungal infections. So you have to keep the skin moist but avoid creases remaining damp
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Old 03-13-2018, 09:14 AM #11 (permalink)
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Default Re: Lastest aggravation

Chally, have you checked the side effects on your meds? Matt has the same problem at times, and I finally figured out that it's the Oxycodone. He can take one dose, but if he does more than that in a day the itching is horrible. I'm sure there are other meds that have that same side effect. If you don't have dry scaly skin, it might be a medication.

Please give Beth my best. She is a wonderful woman. You are a wonderful team.

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