Wednesday, May 22, 2013

Summertime - Too Hot To Handle

I'm talking about heat sensitivity and how it affects MS, not me in a bikini–I'm about 30 years past that expiration date.

Read my latest article on the subject over at To get my own personal view on the matter, keep reading here first...

It was early on in my MS career (because that's how I think of it now, due to the opportunities which have come my way since diagnosis) that I had my battle with summer.

Summer won. That was the year the family drove from Florida to Georgia to see relatives who lived in the middle of Death Valley. Yeah, I know my geography is all wrong, but you could never have convinced me of that.

We were outside in the middle of July with not a single tree in sight. Sitting by a pool and broiling in sunshine. The mercury was pegging 100 degrees. Not knowing there would be swimming involved, I wasn't dressed for the occasion. I was wearing jeans and a T-shirt and sitting at the little round glass table with everyone else. I don't even recall an umbrella. I just remember the unbearable heat.

It grew hotter and hotter, but I never broke a sweat. That reminds me of the back-handed compliment/joke my dad used to tell, "You don't sweat much for a fat girl." Had I been able to sweat, I may have cooled off, but instead the heat just drove my core temperature through the roof.

I got up and staggered to the car, parked about twenty feet away and crawled inside to start up the A/C. Even with it blasting in my face, it seemed I couldn't cool down. By this time both legs were numb and weak. I was experiencing a fatigue like none before. I felt like I weighed a thousand pounds and it took everything I had to even lift my head off the back of the seat to turn and call out the window for someone to help.

That was my first–and most dramatic–encounter with heat sensitivity. After that weekend, when we returned to Florida, I ended up being admitted to the hospital for three days of IV Solumedrol to halt a new MS attack. My neuro at the time claimed it was only coincidental that I had such an intense reaction to the heat and then had a relapse. I've always wondered if maybe it wasn't the reason.

So this week's article about heat sensitivity is something I know most of us with MS are familiar with. If you have MS and don't have an issue with the heat, I'm assuming you are reading this at either the north or south pole, in which case cold is probably more of an issue.

If you are anywhere in between, be sure to read along for some great pointers and links to tools that could make summertime more bearable for you.

Because they don't have room for all the wonderful content I would love to share with you over at, I am going to continue blogging my "leftovers" so you can get a veritable  smorgasbord of useful info.

This Week's Leftovers (in no particular order)...
In an interview with Anne P., who is from Georgia and has had MS for 14 years now, we learn about her own experience with the heat. She also has quite a few good tips on how to deal with it.

"[I use a] cooling towel. I love the Frogg Toggs towels and neck wraps - they are amazing. Other than that I always have ice water at the ready and do my level best not to be farther than a comfortable walk to an air conditioned space - even if it's my car!," Anne advises, "Don't push it. Stop, rest and cool down a lot, even if you think you don't need to. It is better to be safe than sorry!"

When asked how heat sensitivity has made a difference in her life, Anne says "My days of pool parties and outdoor festivals are over. Really, what I miss the absolute most is being able to volunteer at booths for a local charity that I love."

Thanks, Anne!

Corrina Steiger, President of the North Florida Chapter of the NMSS provided a lot of valuable tips on dealing with the heat. She also mentioned that the NMSS has resources to help people in need of assistance obtaining cooling vests or paying high cooling bills. "For more information on how we can help, contact the Society in your area by calling 800-344-4867.”

Thanks, Corrina!

The interview I had with Dr. Scott Silliman was conducted over the phone and I did my best to type and listen and comprehend all at once, but I probably failed him miserably. He had so much great info to share.

"I usually see [heat sensitivity] most in people with spinal cord MS and in those with optic neuritis. I see it less in patients with a cerebral form of MS." Silliman said, "This is because there is less redundancy of nerve pathways in the spinal cord and also in the optic nerve, so there is less ability to compensate for nerves that aren’t working.”

It was an honor to have the pleasure of interviewing Dr. Silliman, as he is my own personal neurologist and was the lead investigator of the TRANSFORMS trial in which I participated.

Thanks, Dr. Silliman!

Kim Gillespie, creator of the TaTa Coolerz, has a different approach with how to combat the heat, for women anyway. She was away on a camping trip over Memorial Day Weekend (happy anniversary, Kim) when she got the idea for a cooling device that could be discreetly worn to cool you off without everyone aware you are suffering. The TaTa Coolerz are worn tucked inside a woman's bra, providing cool comfort to a sensitive area while bringing down your core temperature.

"They go right in the freezer, then you take them out and squish them up to get them malleable. Then, when you tuck them in your bra, they conform to your shape. We've had them last as long as two hours, fifteen minutes in the Florida sun."

"They are designed after high-end fashion push-up bras, and they are durable and reusable," said Gillespie. From her facebook page, "For the entire month of May TaTa Coolerz is honoring Mom. Please use code: Mom2013 to receive a 20% discount on your purchase."

Thanks Kim, for giving us another alternative to fighting this intolerable heat!

Summer doesn't have to be dreaded and unbearable. We can once again venture back out into nature to take part in fun activities like pool parties or picnics as long as we approach it with common sense and a few tools.

That's it for this week.

If I don't see you before, I'll see you next week. Until then, try to stay cool.

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