Cold Weather Torture!

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slopokahontas

Distinguished member
Joined
Sep 5, 2014
Messages
116
Reason
PALS
Diagnosis
08/2014
Country
US
State
Az
City
Tucson
I live in AZ and I'm already a wimp about child weather, however, since ALS cold is pure torture! Am I the only one? How do you all survive winters without knocking yourself out?
 
Look for fleece arm & leg protectors under or instead of clothes, at adaptive clothing sites.
Vasowraps for the legs if you can pay the freight.
Not sure if you're in a wheelchair -- outdoor blanket (nylon/fleece) up top, fleece ponchos/blankets pulled up all the way if so. Use bungee cords when you're out to keep everything wind/water (well, maybe not a concern in AZ:)-tight.
If you're still ambulatory, leggings/dance tights, etc. -- some are wool.
 
I bought my husband a zip up sherpa hoodie. We are in florida. He asked me when would he ever need that....well the other morning he wants to go out and its about 40 degrees. I help him get in layers...compression clothes are great if you can manage them and put on the sweatshirt. He was toasty.
 
My husband went for a second opinion. He complained to this doctor that he is cold all the time now. He told my husband this is not an ALS related issue. He also mentioned some pains in his legs and the nurse told my husband that ALS is a pain free disease. The first opinon said early stages of ALS and would most likely confirm diagnosis at next visit. This doctor said it was too soon to do another EMG. So really did not learn much from this visit.
 
We flew to Florida this week- despite my husband's concerns about the plane, taking his power wheelchair, etc. it was actually quite comical. He was in a line of 18 people in transport chairs! It was like a mass exodus of old people to the land of sunshine and warmth! Anyhow, the facilities supervisor personally met with us (I had called ahead!) and went over how to properly turn things off. (My original call to the airlines had them telling me The manual said they would take the battery out, store it in a wooden box, etc.). Anyhow, I took documentation and instructions from our PERMOBIL rep so we could instruct the supervisor on simply turning off a fuse. He was very helpful and allayed hubby's fears. The flight was great and we are now enjoying surf and sand in 70+ temperatures! So relieved it all worked out and hubby has his chair for more freedom.
 
I think I will hibernate this year. My symptoms only started last February but I have been having trouble with winter for a couple of years. Strangely enough my sister is too warm most of the time!
 
I find that it fluctuates for me. I can be burning up one minute, a few minutes later I'm freezing. I just dress light and keep a lap blanket handy. Doesn't matter what time of year or what the temp is. The cold does bother my arthritis a lot more though. I'm thinking that these docs forget that by the time we get to this age, ALS is not our only ailment. It's the one we're most concerned about but not the only one and these others in conjunction with ALS makes it that much harder.
 
Thankfully I can still walk! I too my kids trick or treating and dressed up as a fish. My soon called me the stiff fish! I keep getting Charlie horses even after taking baclofin. I hate that stuff, but figured it had to help. I will try some legging under my clothes. I want an electric blanket that's portable! Sounds heavenly! I already lug around my portable heater. I've never heard of vasowrap! Sounds dirty! But I'll look it up! I was tempted to leave my house in my footy pajamas yesterday!
 
I have lived on Colotado my whole life and I hate the winter. I think I am the only person born and raised in Colorado and never been skiing.
 
The key for me is not to get chilled since I begin shaking and have a tough time recovering. Our AZ mornings/evenings are deceptively cool, but it's awfully nice to sit out in the sun the rest of the day!
 
My husband went for a second opinion. He also mentioned some pains in his legs and the nurse told my husband that ALS is a pain free disease.

Pain free my a$$! When people say that about ALS I want to punch them in the throat. How I wish that for one week they could experience what I feel, because I assure you it is not 'pain free!'

I have cramps everywhere (my 'favorite' is the tongue) and have had cramps in my eyes lately! Pain free... sheesh...
 
Have any of you tried extra magnesium for the cramps? It sure helped me. I get 150% in my six Boost, and add MgCl to that until I have loose bowels.
 
we have a space heater in my husband's office all winter. he keeps a blanket over his legs and hates the cold. our house is a sauna!
 
Have any of you tried extra magnesium for the cramps? It sure helped me. I get 150% in my six Boost, and add MgCl to that until I have loose bowels.

my dr started me on what i think is baclofen. so many meds i can't keep up with. but no cramps so far. :?:
 
we had a 4 degree wc this morning and getting colder
 
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