High Temperatures Make My Brain Become Strangled in Static

Columnist Stephen De Marzo is learning to cope with MS and heat sensitivity

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by Stephen De Marzo |

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AM radio is infamous for bad reception, resulting in nothing but static. You can search the dial frequency by frequency, and it’s all static. Occasionally you will cross a station, but then the car moves, and the reception is lost again.

When I’m overwhelmed with the heat, that’s what it feels like. Static! It feels like my mind is closing off and my brain is being strangled. The noise only exacerbates my multiple sclerosis (MS) episodes. I have to retreat. I need cool temperatures, quiet, and sleep to reboot.

After the diagnosis of my primary progressive MS (PPMS), I read about the struggles people with all types of MS have enduring the heat, and it wasn’t long before I started learning about my own challenges.

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My wife and I enjoyed going to local restaurants for dinner, and one of our favorites during the summer was an outdoor bar and grill. We went there in June 2021 (three months after my diagnosis), and while it was hot, it wasn’t unbearable.

Nonetheless, I started overheating. I couldn’t keep my head up, and I had no strength in my legs to get up and walk to the bathroom. I asked the waitress to bring over water, ice, and towels, and I put the drenched towel over my head for several minutes. During this cool-down period, I was unable to think clearly or speak.

It took about 30 minutes for me to recover. The experience was unsettling for me, and we decided that we’d give up eating outside during the hot summer months. Since that time, the number of my heat intolerance episodes has increased, and while each experience is slightly different, there are some trends that I’ve noticed.

Static!

In March, I almost passed out due to my overheating during a wake we attended. The weather was comfortable outside, so I wore a suit and tie. But inside, the air conditioning in the funeral home was not rated for the number of people who attended. The temperature in there had to be in the high 80s, and with hundreds of people gathering and talking, I knew I couldn’t handle it. The noise and heat in the small funeral parlor were intolerable, forcing me to be carried out for air.

I drank water and stayed outside for about 30 minutes to get my senses back in order. After this incident, I decided that I wouldn’t wear suits anymore.

Yet after attending a wedding in April not wearing a suit and feeling too casual, I decided to try wearing one again for a second wedding in June, this time without a tie.

This event was a resounding disaster. The wedding ceremony was outside, the cocktail hour was outside, and the temperature was 95 degrees in the shade. This heat tsunami set me up for a complete physical and mental shutdown that forced me to leave the reception early.

Again, static shut me down. Normally I am a very conversational person, but not when I’m overloaded. The heat and static are the tunes, and I become extremely irritable. Rags, ice water, and escape are the only stations I want in those scenarios.

My wife is a planner, but I can be quite stubborn and don’t always listen to her. The week of the June wedding, she was watching the temperatures and asked me not to wear a suit since we’d be spending time outside and it was going to be extremely hot. On the day of the wedding, she asked me to shower early so that I could rest for a while before we headed out.

I told her I could handle it. Well, I was wrong. My vanity and my desire to be part of the festivities in the heat created an unpleasant evening for both of us.

I’m now following some of my wife’s planning lessons. This past weekend I went to a pool party when it was 95 degrees. I was appropriately dressed, in shorts and a T-shirt, and did my best to mingle in the shade. As soon as I felt symptoms coming on, I immediately retreated into the air conditioning. My friends were very understanding, and this action worked to mitigate the effects. I lasted the night and my spirit was renewed. Boy, it was a great night!

The next day, a very good friend sent me this text:

“You are an inspiration, my friend. The one thing we all have in common is that our bodies will fail at some point. Thanks for showing us all how to face it gracefully while always bringing joy to others. Love you and your amazing wife! Stay well.”

ms and heat sensitivity | Multiple Sclerosis News Today | photo of Stephen and his wife, standing outdoors in front of a pool

Station coming in clear: Stephen and his wife, Lisa, dressed for the heat in Toms River, New Jersey. (Courtesy of Stephen De Marzo)

It was a great night, static and all!


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Helen Woroniuk avatar

Helen Woroniuk

That was a great story. Thank you.

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Jan Beko-Nathan avatar

Jan Beko-Nathan

You are doing the right thing for your body! I too have PPMS, am on the Ocrevus regime and doing great except for the heat... I find myself lining up projects to do in the air conditioning on 80+ degree days but loving 75 and below... Thankfully my family knows as well the reason I won't be somewhere and tries to accommodate whenever they can... Your friend that texted you sounds awesome and I love his words and display of understanding! Keep on keeping on!!

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MADELINE l NEWTON avatar

MADELINE l NEWTON

thank you for such a wonderful story of how we do forget to do what we must..we do want to be with everyone for all of the great visits with them but now we do have to take our course to be able to enjoy it by doing what is best for us ...all do understand what we are going thru and gladly except what we have to do to be able to stay and visit ....love it ...need to post this a lot to let others to understand that this is what we do need to do and others don't mind ....love and much happiness especially thru all of this heat we are having ...again thank your for showing others what we do go thru living with MS...

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Melinda avatar

Melinda

I, too, have MS and can relate to your story. I'm glad you have such understanding friends. None of my friends or family understands and seem to think I am "faking" when I describe how badly I am affected by heat. I'm also very surprised to see you wearing a black tee shirt; I've purged my wardrobe of all dark colors in an attempt to stay cooler.

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Broce avatar

Broce

I have SPMS. I was originally diagnosed with RRMS in late 2008, but according to three neurologists I’ve seen, my first flare dated to 26 years prior to that. (i’m a woman, so over the years my medical complaints were dismissed as being all in my head.)

Heat sensitivity is one of my most severe symptoms- I cannot tolerate temperatures above 54*F. Obviously, in the summertime, even central AC in my home can’t keep up. I routinely end up flaring in the August-October timeframe, depending on how hot the summer is. When I overheat, which can happen with five or ten minutes of moving around the house, all of my MS symptoms go into overdrive. Two summers back, my AC died. It was still blowing air, but the house wasn’t cooling. My brain was so fried that it took three days for me to figure out it wasn’t working!

I hate the summer. I hope your heat sensitivity never gets worse than it is right now. Mine has turned me into a hermit!

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