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Hot weather and neurological disease

Posted by MGMolly @Erinmfs, Jun 29, 2019

I suffer from myasthenia gravis, and historically, my symptoms are worse in hot and humid weather. I've heard this is true for MS too, so I turned to Google to find out what that says, and why that is, and here it is

Heat or high humidity can make many people with multiple sclerosis (MS) experience a temporary worsening of their symptoms. Doctors believe that this occurs because heat causes nerves (whose myelin covering has been destroyed from MS) to conduct electrical signals even less efficiently.Sep 16, 2018

I thought perhaps there were some others here like me seeking refuge in their air conditioning to prevent their neurological condition from flaring too. The temperature is to hit 95 degrees today, and I'm almost terrified to go outside as I'll begin to suffer the consequences, and we are not to July yet!

What do you to keep yourself busy in the cool air? I do crochet, and I like to quilt.

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butterflylan17 | @butterflylan17 | Jun 29, 2019

Hi Erin, My symptoms also get worse when summer arrives (I'm from tChicago) and live in WI now. But at one time lived in Florida for several years, where I was treated at Moffitt Cancer Center in Tampa for my breast cancer. I did enjoy going to the walking pool and made up some of my own exercises which definitely helped me mentally. But now I live in such a rural area that I have to drive 30 miles just to pick up a prescription. So, I've also thought of the very question you raise, which is an excellent one! I would like to learn to crochet. I've recently looked into something new called "Zentangle." This is really a form of meditation. I bought a work book on Amazon for $8.99, called "Zentangle 1" and you practice drawing, for example, circles, waves, ovals, a queens crown, and before you know it, you've actually created a piece of art once it is all put together. I suppose one could put the pattern on a t-shirt or socks, a bracelet, etc. Maybe I will finally get in touch with my creative side! It sounds like you definitely have one!

And I like to read, usually books that have some humor and are a little on the lighter side because I feel like I'm reading medical stuff all the time....

Yesterday I ended up with a horrible migraine and was out for pizza with my fiance and ended up vomiting. It was horrible. I'm on meds to prevent migraines but they don't seem to be working very well. I will probably go back to Botox injections. I see my neurologist on July 23rd about the severe iron in my brain. I do have fibromyalgia and arthritis, but cognitively something is also going on. And I think it's great that you are addressing such an important topic! Sometimes the worst thing is just to be alone with your own thoughts....

I hope that you stay cool! Positive thoughts coming your way! Laura

REPLY
1 reply
MGMolly | @Erinmfs | Jun 29, 2019
In reply to @butterflylan17 "Hi Erin, My symptoms also get worse when summer arrives (I'm from tChicago) and live in..." + (show)
@butterflylan17

Hi Erin, My symptoms also get worse when summer arrives (I'm from tChicago) and live in WI now. But at one time lived in Florida for several years, where I was treated at Moffitt Cancer Center in Tampa for my breast cancer. I did enjoy going to the walking pool and made up some of my own exercises which definitely helped me mentally. But now I live in such a rural area that I have to drive 30 miles just to pick up a prescription. So, I've also thought of the very question you raise, which is an excellent one! I would like to learn to crochet. I've recently looked into something new called "Zentangle." This is really a form of meditation. I bought a work book on Amazon for $8.99, called "Zentangle 1" and you practice drawing, for example, circles, waves, ovals, a queens crown, and before you know it, you've actually created a piece of art once it is all put together. I suppose one could put the pattern on a t-shirt or socks, a bracelet, etc. Maybe I will finally get in touch with my creative side! It sounds like you definitely have one!

And I like to read, usually books that have some humor and are a little on the lighter side because I feel like I'm reading medical stuff all the time....

Yesterday I ended up with a horrible migraine and was out for pizza with my fiance and ended up vomiting. It was horrible. I'm on meds to prevent migraines but they don't seem to be working very well. I will probably go back to Botox injections. I see my neurologist on July 23rd about the severe iron in my brain. I do have fibromyalgia and arthritis, but cognitively something is also going on. And I think it's great that you are addressing such an important topic! Sometimes the worst thing is just to be alone with your own thoughts....

I hope that you stay cool! Positive thoughts coming your way! Laura

Jump to this post

Thank you Laura, I've never heard of Zentagle 1. I will check it out!

One other thing I've tried is acrylic painting. I went to a 'Paint Nite' (in the afternoon) at a local coffee shop and had so much fun! There were about 20 others there painting the same thing with the instructor leading us. It was amazing to see that all 20 of us seemed to have a different interpretation of the instructors paint lessons. My painting turned out reasonably well, and I'd like to try another class. Now that it's gotten up into the 90s I may not get to go.

I'm sorry about your migranes, I hope you feel better soon.

REPLY
1 reply
butterflylan17 | @butterflylan17 | Jun 29, 2019

Hi Erin, thanks for the well wishes. My mom has done acrylic painting and enjoys it. I will need to look for places around me; because that would definitely be fun!

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1 reply
neet | @neet | Jun 29, 2019

Read and I’m ok at a pool if stay in water!

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 30, 2019
In reply to @Erinmfs "Thank you Laura, I've never heard of Zentagle 1. I will check it out! One other..." + (show)
@Erinmfs

Thank you Laura, I've never heard of Zentagle 1. I will check it out!

One other thing I've tried is acrylic painting. I went to a 'Paint Nite' (in the afternoon) at a local coffee shop and had so much fun! There were about 20 others there painting the same thing with the instructor leading us. It was amazing to see that all 20 of us seemed to have a different interpretation of the instructors paint lessons. My painting turned out reasonably well, and I'd like to try another class. Now that it's gotten up into the 90s I may not get to go.

I'm sorry about your migranes, I hope you feel better soon.

Jump to this post

@user_chdb5e8ac Zen tangle is fun and so creative! Maybe I can get @gingerw to join the conversation

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 30, 2019
In reply to @butterflylan17 "Hi Erin, thanks for the well wishes. My mom has done acrylic painting and enjoys it...." + (show)
@butterflylan17

Hi Erin, thanks for the well wishes. My mom has done acrylic painting and enjoys it. I will need to look for places around me; because that would definitely be fun!

Jump to this post

@butterflylan17 I’ve enjoyed reading your posts and those of @user_chdb5e8ac ! You’re both so positive! Have you gone onto YouTube to checkout acrylic painting ? Lots of great information! And @user_chdb5e8ac , you can do the same painting on fabric and then make a quilt—lots of info on YouTube. Have fun and stay cool. I need to get back to my quilting!

REPLY
MGMolly | @Erinmfs | Jun 30, 2019

we had a heat advisory here yesterday, the 'feels like' temperature was 104. I didn't go outside. The humidity is oppressive. I don't like hot weather, I retain fluids and my eyes are droopy (I have trouble seeing anything) with the MG. So, I'm hibernating in the A/C, taking my water pills and staying well. I've learned my lessons from previous hot summers, but I have yet to truly understand why heat is torture for me.

I have begun to love winter, I feel great in the winter. I enjoy 30-50 degree weather, I feel the best.

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