Joy in Hobbies

Posted on May 23, 2022 by MSAA

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

Posted on May 18, 2022 by MSAA

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

Posted on April 25, 2022 by MSAA

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

Posted on April 22, 2022 by MSAA

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

Posted on April 20, 2022 by MSAA

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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Hands In The Air

Posted on March 21, 2022 by MSAA

By Doug Ankerman

I compare my MS experience to that of riding a roller coaster.

Buckled in I began a long, slow climb up the hill having all sorts of weird numbness and tingling. A draggy foot. A few falls. Heck, I didn’t know what was happening.

As the coaster reached the very crest, I was given a diagnosis of multiple sclerosis just before the speeding plunge down the other side. Hairpin turns, twists and loop de loops followed. Some riders screamed, putting their hands in the air – but not me. No way. I held on with a death grip. I was too terrified to let go. I mean, who knew where this out-of-control journey would take me?

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Playing the Cards I’m Dealt

Posted on March 14, 2022 by MSAA

By Stacie Prada

I love the emotional and intellectual sides of aging. With each decade, I grow more certain about who I am, what matters to me, and where my strengths lie. I worry less about pleasing others and more about doing what’s right for my physical and mental health. Without multiple sclerosis, I likely would have enjoyed this aspect of aging, but I believe having MS accelerated my drive to live a life I love and feel good about myself.

I thought some things were non-negotiable while I was pre-diagnosis and in peak physical health. Post MS diagnosis, those same things were reconsidered and proved to be negotiable. With diagnosis, my body’s confusing aspects had an explanation, and I could no longer dismiss them when they appeared. Work and the expectations people placed on me were no longer the highest priorities. Rest, sleep and personal fulfillment earned positions of power that would affect choices and influence decisions. For me, this was helpful and necessary.

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Staying Busy

Posted on February 16, 2022 by MSAA

By Lauren Kovacs

I must say this is easier said than done.

I am kinda bored actually. I am a homebody, but even I have limits. MS has aged me, too.

I mean, I have always liked birds, but watching them used to bore me. Now I can watch them up close. It is like watching a fight club with feathers. Male Cardinals and Blue Jays are jerks. Bullies. I can watch a soap opera right outside the window.

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Short Days, Dark Nights, and Big Hopes

Posted on February 9, 2022 by MSAA

By Stacie Prada

Each winter, darkness pervades my free time. Living in the Pacific Northwest, daylight hours seem to only exist on weekends and during lunch on weekdays. Dry, sunny days are less frequent, and spending time outside requires dressing for wind, rain and cold. While invigorating to experience, inclement weather provides encouragement to stay inside and find comfort from the elements.

It takes more creativity and effort to be active when the environment encourages spending time indoors. The draw of the sofa and screen time is compelling and comforting. I can justify that time and accurately describe it as productive by using it to rest, connect with others, learn, create, reflect and amuse myself. All are valid uses of time, and they only lack fulfillment if they sabotage my needs or goals. Usually the challenge is not the use of time but the amount of time spent on them.

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In My Opinion

Posted on January 28, 2022 by MSAA

By Doug Ankerman

It’s a well-known fact multiple sclerosis is different for each individual. What pains you might not bother me at all. MS symptoms can be as unique as one’s personality.

That’s why writing about the “ABC’s of MS” can be a real toss-up.

What “ABC” means to you could be totally different from what I believe.

Your “ABC” could mean “Always Buy Crisco.” Maybe it stands for “Absolute Best Cat.” Or, short for “A Bulky Corduroy.”

Only you know your particular definition.

In my experience, the “ABC’s of MS” stands for “Any Bathroom Close?”

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