Old 03-23-2011, 10:14 PM #1 (permalink)
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Default Question about Mom's internal thermostat...

My Mom has Bulbar ALS diagnosed Aug. 2010 - 1st symptoms Jan. 2009. She has very limited mobility now and is in her power wheelchair, power recliner, or hospital bed almost all of the time now.

Lately, she has been indicating that she is HOT! She dresses very lightly with a light nightgown & short-sleeve robe and barefeet, but she keeps a light microfiber blanket across her lap, legs, & feet. She wants the AC on...and isn't completely comfortable until it is set somewhere around 65 degrees! (She lives in Louisiana, and yes, she already needs the AC on.) She has no infections, and was recently checked by her ALS specialist.
What is most perplexing is that she is a lady who for her entire life has always been COLD! This is a most confusing turn of events.

We have resorted to turning on a window unit in her bedroom while she is there, so that she doesn't have to cool the entire house with the central air and freeze everyone else. So far that has helped.

Does anyone else have this problem with their internal thermostat? Just wondering if there is something else we can do to help her.
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Old 03-23-2011, 11:12 PM #2 (permalink)
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Default Re: Question about Mom's internal thermostat...

Sounds like you are doing the right thing. I never know from one moment to the next if my husband will tell me he's hot or cold. The temp inside or out doesn't seem to matter.
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Old 03-24-2011, 12:41 AM #3 (permalink)
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Default Re: Question about Mom's internal thermostat...

Thank GOD my husband's internal thermostat has made him hot most of the time. I am 49 and couldn't possibly deal with it if he was cold all of the time. I've been hot for about two years. 68 degrees year round works for me!
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Old 03-24-2011, 09:01 AM #4 (permalink)
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Default Re: Question about Mom's internal thermostat...

As more and more muscles weaken and atrophy - the remaining muscles compensate and might be subject to multiple times the workload they were designed to support

PALS can get quite a workout tying to sit up, eating meals or just sitting and breathing.

That is why it's so critical to keep weight up - because we burn so many more calories doing basic things.

This might explain why your mom feels hot all the time.
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Old 03-24-2011, 09:09 AM #5 (permalink)
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Default Re: Question about Mom's internal thermostat...

just wanted to thank you for this thread. i had never heard of this being an issue with PALS before. I always thought that they usually were cold due to lack of mobility. I know my PALS is almost always cold, especially hands and feet.
I think I would still mention it to the doctor if you havent already though. Just to make sure nothing else is going on.
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Old 03-24-2011, 11:31 AM #6 (permalink)
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Default Re: Question about Mom's internal thermostat...

I'm with Liz, as someone who was always hot, I now find that my legs especially below the knees stay cold. Even with our warm Louisiana weather, I need the a/c on to keep from breaking into a sweat, but the legs are still cold! The joys of ALS
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Old 03-24-2011, 01:14 PM #7 (permalink)
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Default Re: Question about Mom's internal thermostat...

Yep, I used to be nearly always too warm. Now (sitting in power chair), I am also cold most of the time...yet if I try to do anything--reaching for something, for instance, I'm immediately hot. The feet themselves were hot before ALS (I speak of them as a separate entity; we aren't friends) but at least they have an excuse for being cold...

Your mother sounds as if she has autonomic dysfunction. l've heard of a few PALS who have ongoing problems far greater than my own, and not due to any obvious cause. Cold, yet always sweating was one woman's problem. I've never heard of anything which can be done about it.
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Old 03-24-2011, 07:18 PM #8 (permalink)
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Default Re: Question about Mom's internal thermostat...

The body's thermoregulation system is in four parts spread across the nervous systems, so for people with any neurological disease or disorder, temperature is "in play". I'm one of the kind who went from polar bear to sweatshirts in the summer sun, and I can sweat with a body temp of 93 degrees, but it swings both ways.

It is known to be increased by many of the meds people with spinal cord problems take: all the antispastics, for instance. I don't remember the full list, but almost every common spinal cord problem medicine produces thermoregulation trouble.

Before coming to this conclusion, my doc sent me for a full bloodwork panel to evaulate for other problems that could cause temperature issues, like thyroid issues. Blaming it on SCI is a diagnosis of exclusion.
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Old 03-24-2011, 08:05 PM #9 (permalink)
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Default Re: Question about Mom's internal thermostat...

Just today as I laid down on my bed for a nap my helper lady asked me if I wanted a blanket. I said I was fine with just my shirt and sweats and she couldn't believe it because she was cold. What can I say? I'm hot!
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Old 03-24-2011, 08:08 PM #10 (permalink)
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Default Re: Question about Mom's internal thermostat...

damn right you are, barry.
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Old 03-24-2011, 10:44 PM #11 (permalink)
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Default Re: Question about Mom's internal thermostat...

Thank you! to everyone for your comments - it really helps to know that my Mom isn't alone in what is happening.
She indicates that she feels Hot, but her legs, feet & hands are cold to the touch. She does stay quite busy with her reading and writing.
I have contacted her ALS Doc in Houston to review this situation, to see if it is possibly a side effect of meds, or progression of her ALS. We shall see....
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Old 03-27-2011, 12:22 PM #12 (permalink)
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Default Re: Question about Mom's internal thermostat...

yep, i agree, never in synch with others re temperature and legs and feet icy icy
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Old 03-27-2011, 01:35 PM #13 (permalink)
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Default Re: Question about Mom's internal thermostat...

I'm cold most of the time too. Slight wind just sucks the heat right out of me, even in summer.

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Old 03-27-2011, 02:07 PM #14 (permalink)
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Default Re: Question about Mom's internal thermostat...

My hands (finger tips to be percise) and feet and legs below the knee are always cold, even when my body is sweating! Another challenge to "adapt too". Don't you hate that term?
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