Too Too Hot

By Doug Ankerman

Yep that’s me in my usual place on hot days… laying in front of the register, hogging all the AC.

Except on THIS hot day (the 1st one of the season) our air conditioning was on the fritz. There would be no refreshingly cool splendor till we had someone come check it out.

Our neighbor knew a guy who knew a guy who did AC work on the side. Always looking to save a few bucks, we called the “mystery guy” named Dennis who said he wouldn’t be available for a couple days.

“No prob,” we replied. “We’ll see you then!”

What followed was a stretch of near 90 degree temps with thick Ohio humidity you could serve with a ladle.

Yes, I was fried.  My MS-infused nerve endings were popping like bacon on a hot skillet. My dogged feet dragged ruts in the carpet going room-to-room in search of a cool spot.

I baked. It would have been cooler in the oven had I turned on the exhaust fan.

I rejoiced as word came that Dennis, my new-found AC savior, would be here the following afternoon. That night was another restless slumber. I actually had to be peeled from the sheets getting up in the morning.

My legs were weak. My arms were numb. I was Betty Spaghetti’s older brother, Bobby.

Put me in a strainer ‘cuz I was 180 lbs of cooked pasta.

Dennis knocked on the door promptly at 3:30. After I finished kissing his scuffed boots, he and his tools commenced to work on our defunct air conditioning.

A mere five minutes later the behemoth box was humming with life. Seems it had been turned off outside and all Dennis had to do was flip a switch. (We had new siding installed last fall so the siding guy disconnected the AC and simply forgot to turn it back on.)

Cool air returned — and slowly, so did feeling in my body.

Thanks to Dennis I have returned to my usual summer haunt. Hogging all the air. A glutton for comfort, I am.

I tell you this tale because you already know the tricks of keeping cool when temps flare. So I’ll just remind you to be careful. Work slow and steady. And enjoy the too too hot summer wisely.

*Doug writes silly stuff about MS and other topics on his humor blog at myoddsock.com

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I Crumble in the Summer Heat and Sweltering Humidity

By Penelope Conway

Thermometer in the summer heat

Last summer the heat outside kicked my butt. I tried all the normal tricks to remain cool and keep my core body temperature down, but no matter what I did my body grew weaker as the summer progressed. I’m not looking forward to the coming hotter days.

It’s crazy to get exhausted just going to the mailbox. That short of a trip and I’m ready for a nap. I have learned to take things as they come and listen to my body even though it’s not always easy to do. It can actually get quite frustrating.

Sometimes I will have my heart set on going somewhere then not have the energy to go and have to cancel plans. Or I have something that needs to get done but it doesn’t get done for days and days and days just because I can’t muster up the strength to do it. If I could, I would hire a maid to clean for me, a cook to make my meals and a chauffeur to take me places. Now that would be the life! Include getting rid of MS into the mix and that would be my dream come true.

But as it is right now, I’m the one that has to do everything. It’s up to me to take care of the house, do the laundry, prepare my meals, bathe, vacuum, pay the bills, make the bed, put gas in the van, clean up my messes, and live with MS.

Between the coming heat and sweltering humidity, I crumble. Some of my tips of how to survive the hot days may seem a bit odd, but they work for me.

Wear an Ice Vest to Bed

I have an ice vest I receive many years ago but it’s too heavy to wear so I have created a lighter weighted version of the vest and wear it to bed. That’s the time of day I really need help with the heat the most. If I can’t get comfortable at night, I’m miserable. The ice will stay cold for about two and a half hours and then I switch out the ice with a second set of ice packs.

Make Cold Drinks

I keep plenty of frozen water bottles that I take out of the freezer an hour before bed so they have time to thaw out and I can sip on them. I also will use my ninja blender to crush ice and make soft snow cones to enjoy. They actually cool me down quite a bit.

Keep a Water Hose Hooked Up Outside and Ready to Spray

I still do yard work which can be killer in the heat but having access to water that you can spray as needed helps. I have been known for getting drenched each trip on my riding mower to the back yard.

So what do I do when the heat overwhelms me and I can’t do what I need to do? I do what I can and leave the rest for another day. I have had to learn to be okay with not getting everything done that I want or even need done.

Taking care of me is way more important these days than taking out the trash or getting the mail. My well-being is more important than attending a ballgame in 100 degree weather and my health is of greater importance than buying a birthday gift for the lady down the street.

Be good to yourself. Take care of you. No one else is going to do it for you. It’s okay to cancel plans, veg on the couch, sleep late, and most importantly to need help. That’s not being stubborn or selfish. That just what you have to do to keep going.

Keep going, doing, being, until you can’t any longer. I have never met an MSer that wasn’t a strong and powerful fighter even on their weakest days. We push through some of the toughest battles. Things that other people never see or even know about because we simply keep going. MSers are an amazing example of strength, persistence and determination. I’m so very proud of you and cheering you on today.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2013. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

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Summer Heat

By Stacie Prada

Summer’s here, it’s getting hot, and it’s getting really tough to stay cool.

With multiple sclerosis, many people have heat sensitivity that triggers MS symptoms. For me, it brings on fatigue, and my body goes numb. It usually starts with my feet and legs. Without intervention, the numbness can spread to my full body from the neck down. It’s not disease progression, but it can be frustrating and depressing. In my youth I basked in and relished extreme heat. Now it makes me anxious for the possible consequences.

Cooling feet off in the water

Suggestions abound for ways to stay cool in the summer heat. Stay hydrated, wear cooling aids, stay in the shade, have air conditioning, travel somewhere cooler, be rich. The last one is said in jest, but there are so many barriers to remaining cool when the weather heats up for more than a day or two. I suspect the barriers are easier to remove when wealthy.

The preferred options are also very individual. Environment, health, finances and area of control differ drastically for each person. Cool showers work for me, but they might not be possible when needed. They can also be difficult for those with mobility issues. My go-to method is to use my medication cold packs as cooling aids. Wrapped in a towel, they cool me down quickly when placed on my belly or the back of my neck. 

I don’t have air conditioning in my home or at work, so I plan ahead for hot days. My office is located in an historic building of stone and brick construction without air conditioning. We fondly refer to our office as a pizza oven when the brick warms up and our offices remain excessively warm for days. In my area, it’s the start of a heat wave. It was 80 degrees at my desk today, and the humidity made it feel hotter.

I drink cold water, use the ceiling fans, open the windows for air flow, and direct a small fan above my desk at my torso. Films coating the windows and blinds adjusted help diffuse the sun’s rays from directly warming the office. None of this keeps the office cool, but it makes it a little more bearable. 

It’s a challenge getting work done and looking professional while trying not to overheat. Sportswear is good for the technical construction and breathable fabric designed to keep athletes comfortable, but it can get expensive and isn’t always appropriate for the office. Sun dresses, skirts, breezy style tops and other loose clothing that don’t cling to sweating skin help. Often being comfortable can be achieved, yet we resist in an effort to be socially acceptable and presentable. The business world generally encourages discomfort at the expense of good self-care. I want to give myself and others permission to do whatever it takes to stay as cool and comfortable as possible in hot weather.

I try to remember the conditions where I am are not the same everywhere, and they’re sometimes drastically different at a nearby location. It’s interesting to me how different it is for the offices across the hall located on the shady side of the building. They’re often cool even on very hot days. I need to remember this. Where might it be cooler? Go there for a moment. Even a quick break could help.

Note to self: Sometimes it’s not about being able to do something to relieve the discomfort, it’s about giving myself permission to do what it takes to be comfortable.

I live near the beach, and yesterday I walked along the shore barefoot in the water. It felt so decadent that I couldn’t believe I’d resisted the idea of taking off my shoes and socks to get in. I knew the saltwater would be really cold, and it was. I hadn’t considered how refreshing it would be after the initial shock. It cooled me off, and the unplanned stroll was heaven.

Lesson noted: Sometimes the initial discomfort is necessary to get to comfortable conditions.

Please do what you need to do to care for yourself and those around you, especially in heat waves and situations where certain behavior is expected. You might just inspire someone else to give themselves the permission they need. 

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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7-Up Cake Recipe

This 7-Up cake recipe is a moist lemon flavored cake that is made with a simple yellow boxed cake mix and topped with a delicious lemon icing.  I think this classic, vintage cake recipe is a summer favorite and is sure to please.

Ingredients

  • 1 box yellow cake mix
  • 1 4 oz small box instant lemon pudding
  • 1 cup 7-Up soda or lemon lime soda
  • 4 eggs
  • 3/4 cup vegetable oil
  • 2 cups confectioners’ sugar
  • 1 tbsp lemon juice
  • 2 tbsp milk

Instructions

  1. Preheat oven to 325F degrees. Spray 10-inch bundt pan with nonstick cooking spray.
  2. In a medium bowl, combine all the cake ingredients (cake mix, pudding, 7up, eggs and oil).
  3. Mix until combined.
  4. Pour batter into bundt pan.
  5. Bake for about 40 minutes.  Allow to cool completely, then remove from bundt pan.

Icing:

  1.  In a small bowl combine confectioner’s sugar, lemon juice.
  2.  Add milk in slowly until you have reached desired consistency.
  3. Pour icing over cooled cake and serve.

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Father’s Day—For All of Those Special Guys

With Father’s Day just a few days away, it’s nice to take this time to think of all the special men in our lives. They certainly don’t need the title of dad or father to be thought of at this time of year. Especially if they hold a special place in your heart and life, no matter the type of relationship. We have fathers, grandfathers, brothers, uncles, godfathers, cousins, and friends that we are blessed to know and be surrounded by. They deserve to be recognized and celebrated, for more than just one day!

It’s a perfect time to let these special guys know what they mean to you. What you admire most about them and what you treasure about your relationship. Tell them thank you and how they’ve made your life brighter. Whether they’ve provided you with strength and courage, protection and love, or just endless support. Don’t miss out on a moment where you can express to them all that they are to you.

The day may also bring challenges for those who are mourning and remembering the men in their lives whom they’ve lost. It can be a difficult time for the men waiting and hoping to become fathers, or for those who have lost a child. But the day can be spent honoring and recalling special moments and memories too. To have faith and keep hopes that future Father’s Days may look different.

Wishing everyone a wonderful day!

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Keep Cool This Summer

It’s that time again, summertime that is. In just a few days, it will officially be Summer, and the heat has already been pretty brutal for many. Any amount of heat, no matter how minor, might affect neurological functions enough to exacerbate symptoms. Keeping cool can help you maintain a consistent, cool body temperature and prevent flare-ups. To help keep you cool this summer, MSAA’s Cooling Program is here to help!

MSAA offers free cooling products such as a cooling vest, wrist wraps, ankle wraps, and neck wraps! These free cooling products are great ways to keep cool this summer for free. Yes, you read that right, I said free! MSAA’s Cooling Program is an excellent resource that “offers cooling vests and accessories for adults with multiple sclerosis as well as children diagnosed with pediatric MS.” MSAA’s Cooling Program is open 365 days of the year, which means you can apply at any time throughout the year. This is a great way to beat the heat sensitivity that often comes with MS without having to break the bank. Here is a link for more information on how to apply for your free cooling products through MSAA’s Cooling Program, https://mymsaa.org/msaa-help/cooling-products/.

If you find that you do not meet the eligibility guidelines for MSAA’s Cooling Program and would like to purchase your cooling products, you can always reach out to the manufactures listed below. If you call and mention MSAA, you could be eligible to receive a discount on your purchase.

Keeping cool this summer is a must, especially when managing Multiple Sclerosis. I encourage you to take advantage of MSAA’s Cooling Program to help keep your body cool and refreshed.

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The War on Summer Heat

By Lauren Kovacs

It is a war of bugs and blankets of heat.

Limit time outdoors folks. Being unsocial is part of MS for many. I would rather not be a wet noodle. Even if you are an extrovert, say “no” to the soggy social butterfly. I would rather be perky than soggy. Butterflies can’t fly with wet wings and MS can drench them. Be social inside. Air conditioning is our friend. Stay cool and they will come, so to speak.

Drink slushees and smoothies. I find sipping semi frozen drinks help me, if I can get through the brain freeze. When available, ice cream is my BFF. Ice being the main word for me. Wear ice and consume it.

Cool feet housed in sandals, a cold drink, air conditioning and various cooling items are my shields in the war on summer heat.

I also picked up a trick from my aunt years ago for fashion purposes. Now, I use it for MS. Swim trunks make great shorts, with the mesh cut out. They can get wet, thus a glorious moment of reprieve. Bonus, they dry fast and allow for multiple cooling opportunities.

I used cooling wrist wraps, when I rode horses for therapy. I need new ones, however. Their farm smell was offensive at my last theme park visit.

While the kids rode some puke inducing roller coaster, I waited in the shade. Many folks didn’t embrace the earthy smell my wrist wraps were omitting. So yeah I need new ones.

Cool is cool. We are not going to gain brownie points. I often pay for trying to be outside. Stay where it is cool. I personally have days of paybacks just for letting my butterfly be social. If I get hot, then paybacks are longer.

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Leslie Pino Durant – June 2021 Artist of the Month

Each year, we feature the work of artists affected by multiple sclerosis in our annual MSAA Art Showcase. We receive many wonderful submissions from across the country and are delighted to share the work of these artists and their inspirational stories with you, including highlighting one artist each month as our Artist of the Month. This month, we are proud to feature artist Leslie Pino Durant of Jemez Springs, NM:

Leslie Pino Durant Artist of the Month artwork entitled "Moose in Colorful Forest"
“Moose in Colorful Forest”

About the Artist – Leslie Pino Durant

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Community Views: Managing a Flare

Prepare for MS flare - an illustration of an MS flare

Part of living with multiple sclerosis (MS) is dealing with flares. A flare, also called a relapse, is when MS symptoms recur or worsen.1 The change in symptoms lasts for at least 24 hours, but often much longer.1 Flares throw a wrench into daily life and plans. They are challenging to manage. Curious about how you handle flares, we recently posed this prompt to our MultipleSclerosis.net Facebook community: “You feel a flare coming on. What is the first thing you do?”

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Don’t Wait, Act Now!

By Doug Ankerman

There are things we are reminded to do on a regular basis.

Replace batteries in smoke alarm
Floss
Rotate tires

Some are to be done seasonally, others annually.

Change furnace filter
Swap baking soda in fridge
Have eye exam

And yet, others are on an “as needed” basis.

Cut toe nails
Vacuum inside car
Shave back

But what I ask is… “Why wait to make a change or a new beginning?”

Why wait till a new season? Till the new year? The next month? Or, even Monday?

Do it now. This moment. There’s nothing stopping you. Do something right now to improve your being. It doesn’t have to be huge. Drink water instead of soda. Eat a piece of fruit. Stretch your weary legs. Take a deep breath. Dance to music. Make a silly face.

My point is, don’t wait to begin anew. Certainly, our nemesis multiple sclerosis doesn’t wait around. It doesn’t wait for the following day, week or month to wreak havoc. Heck no, that bad boy changes constantly. So we must be willing to change with it.

A fresh start, or a new beginning can happen anytime YOU want it to. There is no need to put it off till the flip of a calendar. You can make a change right now. This very instant.

Replace car’s air filter
Have an MRI
Clean dryer vent

Okay, okay, I understand the importance of replacing batteries in one’s smoke alarm—but don’t put a timeline on improving yourself.

Get started right now. That other stuff can wait.

*When not shaving his back, Doug writes goofy stuff about MS and other topics on his humor blog at myoddsock.com

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