Cold Weather Relief

[tripete]

I have noticed that if I am outside in Cold Weather (below freezing) my breathing, legs, and hands all feel better. If I stay out in it for hours and then come back in my faciculation will be crazy intense. The relief from being outside is so good though that it seems worth it. It is possible that the faciculations are just from standing for hours though (my worked has required me to be with clients for three hours at a time outside doing training), as I also am extremely fatigued after doing so.

I was wondering if anyone else has experienced this, or if there have been any studies done on the effects of coldness on ALS. I am considering taking a cold bath each night and seeing what the results might be.

 

[Nikki J]

Opposite here. Cold makes me worse but as they say PALS are like snowflakes each of us is unique!

 

[davbo49]

i don't feel any different in the cold. the thing is now i am cold all the time.

 

[Trixie80]

I too feel stronger in the cold and weaker when really warm.

 

[gooseberry]

Hubby struggles mightily in the heat. Feels quite a bit better when he is cool but not cold.

 

[Nikki J]

Maybe we should define cold? I mean less than freezing. It is zero Fahrenheit today and moving is tough

 

[affected]

Chris found the cold made everything harder.

 

[Diane H]

Way back when they used a hot tub test to diagnose neuromuscular diseases and Multiple sclerosis. Put the patient in a warm bath and if he was a limp ragdoll when fished out he had some disease affecting nerve transmission. PALS who do better warm are probably those with more spasticity problems. All I know is that we have a high of 1 degree and I am not going out!

 

[affected]

That is really interesting Diane!

Chris indeed had a lot of spasticity ...

 

[Trixie80]

Long before i had any symptoms of als, actually for as long as i can remember, i would get out of a hot tub and feel like a rag doll. Have had to keep mine at 99 or 100 to be enjoyable. I didnt realize that the two maybe or may not be connected, who knows. On another note I also have limited spasticity if any.

 

[vzandt]

Cold turns my guy into a spastic tin man. Not good...not good at all.

 

[Barbie]

We have to keep our house warm all the time. He hates the summer heat--after the weather goes up to the 80's he never goes outside, and conversely he can't deal with the cold either. back when he could walk he would turn into a tin man if he was out in the cold!

 

[swalker]

I have always liked the cold, but now find it makes things much more difficult. I especially find that my hands don't work as well when they are cold.

On the other hand, the hot tub does wonders for me.

Steve

 

[CaptainPlanet]

Breathing wise, I'd have to absolutely agree with you here. Living in SoCal, even in the winter there are a lot of warm/hot days. Being at FVC of low 70's I am very sensitive to the thickness/breatheability of the air, and when it's warm it's much harder to breathe. When the sun goes down and the cold starts to nip, my breathing comfort increases considerably. I'm a new man by about 9pm. I like to go outside and sit for a good hour and breathe that easy air. We also get quite a breeze being close to the water so I make sure my nose is opposite the direction of it. It's like a natural low strength BiPap. Wonderful.

 

[CaptainPlanet]

I guess not like a BiPap (I haven't gotten one yet so I don't know) but the breeze helps my weak diaphragm draw in that cool air. Instead I will say it's ike sticking your head out a car window going very slow heheh..