Summoning Summer

By Stacie Prada

Well into July this year, summer weather hasn’t arrived where I live yet. Days are cool and pleasant, but intermittent rain and cloudy days persist.

A few days ago, I ordered an iced coffee for the first time this year. With my first sip, I had a strong sense of summer. It was an involuntary and automatic response where my exhale was one of complete satisfaction. It made it clear to me how much seasons are about more than the weather. I’d been waiting for summer to start, and I realized I can enjoy summer without waiting for the weather to change.

Summoning Summer written on a yellow post-it talking about summer weather
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All About the “h”

By Doug Ankerman

There are two sides to every issue. You have the pros & the cons, the agree & disagree and the ever-popular for & against.

Summer is one of those issues that is widely split. Some love it while others can’t stand the thought. As I will explain, the big difference between the two sides is all about the “h.”

Picture of a blue Etch A Sketch saying Ah Summer and Ahhhh Summer drawn by guest blogger Doug Ankerman

“Ah Summer!” people. They thrive during this season. Basking in the warmth. Soaking up the sun in all vitamin D glory. Energy & vitality all day long.

Meanwhile, “Ahhhh Summer!” people do their best to avoid the season’s amenities. Lurking in the shadows away from direct sun. Never straying far from AC or a powerful fan.

Unfortunately, those of us with multiple sclerosis tend to be in the “Ahhhh Summer!” group. The harsh sun drains our energy like a V-8 engine uses gas driving up a mountain. Plus, summer’s high temps and thick humidity soak us further into a wretched pile of human goo. But no need to suffer my friend as there are ways to make your summer pleasant & comfortable.  Here are a few of my favs…

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The Trying Game

By Lauren Kovacs

Well, summer has exploded like a bad firework. The dreaded heat has washed us ashore and left us feeling wrung out. Exhaustion is our needy, constant companion on the beach, while the ship parties.

I am right there with ya. Feeling left out seems to engulf my summers. That ship stranded me on the desert island called MS. Even in my chair, wet noodle syndrome hangs around.

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Balancing Whimsy and Invisible Forces

By Stacie Prada

Art that resonates with me changes depending on where I am in my life, how I’m feeling, and what I’m facing. Some things I loved at certain points in my life I love because they spoke to me at that time. I think if I were to first see some of them today, I would not connect in the same way as I did back then. I have some pieces that spoke to me during dark times that I chose to let go when times changed and they no longer brought me solace.  Others have endured through life changes and still resonate.

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A Hobby Lobby

By Doug Ankerman

Work may define us but it is our hobbies that makes us unique.

Hobbies give you zest. Give you fire. They put a sparkle in your eye.

A hobby is what makes you – YOU.

So don’t let anything, like the dreaded ick we call multiple sclerosis, take your hobbies away from you.

MS is no reason to give up an activity you love. Accommodations can be made so you may continue doing what you want to do.

Like to paint but can’t hold a brush? Don’t let that stop you. There are dozens of computer programs that allow you to create (and no messy clean-up!).

Like to dance but can’t stand? Take a chair onto the dance floor, plop down & shake your bootie, dammit. Believe me, you’ll have more dance partners than you can handle as others will gravitate to your spunk.

Like to garden? Get down & get dirty. I can’t walk in grass & mulch either, so I crawl through the flowerbeds slow as an earthworm. A garden gnome with filthy knees.

My point is, you can do whatever you want…by planning. Come to terms with your MS by saying “We’re gonna do it within reason, and this is how.” Then do it.

Here are a few of my favorite daily activities…

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Joy in Hobbies 

By Lauren Kovacs

Joy seems to morph. Be open to fluid change. The changes in MS will make you see the ebb and flow. Ride the wave. The current might bring you to a hobby you would never try.

Yah yah, flowery language aside. Embrace the change, people. Try to at least. MS is about trying. Try on many faces until it fits. It is kinda like jeans. You try on several pairs. If your butt looks good, buy them. If you can do it and like it, try it.  But, remember to rest and don’t get hot.

Try a new hobby. If MS changes, try another. If it is not for you, try another. The list is endless. No tests or grades.  Maybe try something outside the box.  

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The Liberation & Necessity of Hobby Accommodations

By Stacie Prada

Often the statement is said, “MS took from me…(fill in the blank)…”  Multiple sclerosis takes a lot physically and emotionally, and it is frustrating and depressing. There’s no getting around the ongoing loss and grieving process of living with a chronic and progressive illness. It deserves acknowledgement and shouldn’t be minimized or dismissed.

Image of an orange colored post-it reading "Hobby Accommodations" emphasizing the topic of guest blogger Stacie Prada

Being optimistic and living well with MS demands immense resilience and coping skills. It also benefits from accommodations and adaptive technology. While often described and prescribed for work and personal grooming, accommodations that support ongoing participation in hobbies are especially joy-inducing. They help reduce or perhaps delay some things on the long list of things that MS took from a person.

Accommodations are crucial for how they can make an activity rewarding and fulfilling instead of a reminder of how much we can’t do anymore. Thinking about what makes an activity difficult will help determine which accommodations would be useful for an individual.

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AFO-Yeah

By Doug Ankerman

I’m not a betting man but if you have multiple sclerosis, odds are in your favor you suffer from foot drop.  Foot drop is that draggy, MS hex where your foot never seems to clear the floor for a normal step. It hinders your balance and can make you prone to falls.

The most popular way to beat foot drop is wearing an ankle foot orthotic or AFO.

AFO’s aren’t cheap (what medical device is?), so it would seem an AFO should have more uses than just preventing foot drop.

That’s where I come in.

After much research, here are some other ways your AFO can help around the house…

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MS Springs: Spasticity & Spasms

By Stacie Prada

Spring is a time of fresh starts and emerging from winter. Spring is a season, a mindset, and a promise of better days ahead. Lately, spring for me is the overreaction my arms and legs give for a slight touch. Reflexes that have always overreacted to the tap on the shin or elbow are now exaggerated to a point that seems almost comical for the physical threat they pose to anyone within reach.

Spring now correlates with spasticity and spasms for me. The energy and movements my limbs release are disproportionate to the touch that triggers them. A limb’s quick return to original position and residual spasms mimic the vibration and cartoonish boing of a spring as it comes to rest.

My spasticity isn’t what I anticipated from the descriptions I’d researched over the years.

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Spring 2022 April

By Lauren Kovacs

Old man winter is finally sleeping. While bikini weather is not welcome, the sunshine is and I need it and flowers. Heat I can do without. I need the grey to go away.

NC this year has had strange weather. Gosh, I sound like an old man talking about the weather. I promise I am not an old man. Old…some days I feel old.

Spring is full of rain and up and weather. NC has big swings, this time of year. Now we are in season five. Pollen. It is like snow and it also means cold, wet, grey skies, but dormant vegetation are about to vanish. My favorite chocolate is around too. It better start laying those Cadbury Creme Eggs. Come on furball, lay those eggs faster.

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