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    • #23026
      Dagmar Munn

        For those of us living in the Northern Hemisphere, the approaching colder weather can worsen our ALS-related symptoms. The cold temperature can negatively affect breathing, movement, speaking, etc.

        For me, being in a cold draft or emerging from a warm car into cold air can immediately tense up my neck and jaw muscles. This starts a domino effect through my body as each muscle group becomes tense as well. Any movement at this point is a strain. I’ve since learned to dress in layers and always have a small, warm scarf with me. Sometimes I don’t need it, but when I do, I’m thankful it was there to help prevent the nasty effects of tense muscles.

        How does being in cold temperatures affect your ALS symptoms? What do you do to prevent this from happening?

      • #23049
        Len Jax

          Hi Dagmar,

          I used to shovel snow pre-ALS in Minnesota without a coat, just with a hat and gloves, because I would get overheated. Now I live in Missouri, which is temperate by my standards. If I go outside in the fall/winter, I wear a coat, hat, and gloves. If I get a chill, my jaws clamp tightly together, and I get stiff as a board and cannot move. It then takes quite a while to warm up. As the disease has progressed, I have noticed myself getting a chill in the house if the temp is under 73. If that happens, I heat a corn bag in the microwave and get under a blanket to warm up. Feels lovely and provides comfort for an hour or so.

          • #23065
            Dagmar Munn

              Len Jax, I share that “jaw clench” – – isn’t it awful?

              Great suggestion about the corn bag!

          • #23050
            Kathleen B (Katie)

              Hi all, so, can anyone explain why this body reaction happens in ALS?  Is it a nervous system response?  Central or autonomic?  Will I hear about this at my Dec ALS clinic visit? This will be 1st winter with ALS & a power chair—and I live in a serious winter weather state (Michigan) like Len referred to.   I just expected to stay in more since I now use a power chair…and while our ramp & driveway can be made ok, I’m thinking it will be very messy to get around anywhere else—plus dragging wheels full of slush into the house with me.  (Rain/wet are/have been easy to handle, & I’ve always been good with winter wear layering).  Now it sounds like the extra symptoms issue could complicate things further?  Guess I’ll pray for a mild winter for all of us!

              • #23066
                Dagmar Munn

                  Katie, I don’t know the exact cause of this, but I think mine is related to my hyper-reflexes). You know, like when the doctor taps my knee and my leg does a full-on football touchdown kick!

                  I don’t think anyone at your clinic will mention it… unless you bring it up. It’s not a big deal to other people, but I know having a sudden onset of chills is a big deal to me.

                  I agree with you that dragging slush into your house is not good. I wonder why someone hasn’t invented a cool doormat that automatically cleans the wheels of a power chair. Like a mini-car wash… or at least using a version of those car wash bristles. Does anyone know of something that does this?

                  • #23067
                    Dagmar Munn

                      Wait! I’ve found a few wheelchair wheel cleaners!

                      But they seem so cumbersome. Does anyone know of others?

                • #23069
                  Alan Larrivee

                    First winter. Central Massachusetts isn’t the worst place. Have hyper reflexes. So much to look forward to. Thank you all for the heads up. It’s not something I would have thought about.

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