Thursday, June 1, 2017

Bike the US for MS: My Virtual Ride

Faith moves. “Sometimes life hits you in the head with a brick. Don’t lose faith.” (Steve Jobs)

I was diagnosed with secondary progressive MS in 2003. After a 14 year battle to maintain mobility, I’m now confined to a power wheelchair (Boo!). But with the generous support of Bike the US for MS, I was able to buy this nifty NuStep recumbent trainer (Yay!). It helps me to keep “moving”, stay healthy, fight strong!

Faith moves. “Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.” (Helen Keller)

Since I can’t ride cross-country (my power chair only holds a 25 mile charge), I’m joining the Trans Am team by doing a “virtual ride” using my NuStep. Starting today, June 1, my goal is to log 37,850 steps by the time the team reaches San Francisco on August 1.

Faith moves. “Faith is taking the first step even when you don’t see the whole staircase.” (Martin Luther King Jr.)

Here are my “groundrules”:
  • Following the Trans Am route for the cyclists, I’ll NuStep 10× their mileage for each day (e.g. cyclists ride 60 miles/Angela NuSteps 600 steps). To view the Trans Am route, go to (It's at the bottom of the page.)
  • Each day, cyclists ride from sunup to sundown, taking rest stops as necessary. I’ll do the same. It may take me several NuSteps sessions a day, but my goal is to log all the steps between sunup and sundown.
  • Acknowledging my limitations with MS, there will be days that my energy will not allow me to NuStep. That said, occasionally I’ll log extra steps in a day to store in reserve for the days that MS gets the best of me.
  • Along those same lines, I will do all the NuStepping on my own with no assistance. As tempting as it would be to ask someone to move my arms or feet for me, I’m determined to do this by myself. No guts, no glory, right?
Faith moves. “Without faith, nothing is possible. With it, nothing is impossible.” (Mary McLeod Bethune)

You’re invited to follow my progress on Facebook or by signing up for daily updates on my blog, A Myelin My Shoes ( Time to get to NuStepping! Ready? Set? Here…  I…GO!


Tuesday, May 30, 2017

Bike the US for MS: My Story

Who is Angela Shaw? And why does she keep “liking” pictures of people on bicycles on Facebook? The answer to the first question is still under development, so let’s tackle the second…

Born and raised in Los Angeles, I grew up indulging in every physical activity reasonable within the confines of city living. I played street football. Climbed short trees and brick walls. Rollerskated down monstrous hills. And I rode my trusty steed daily: a 1974 Pep Boys special 10 speed bike painted in bright banana yellow. We ruled the streets of View Park.

What marvelous adventures we had: speedy rides to the library; super treks to the beach; escapes from neighborhood canines, irritated neighbors, and big-time bullies from around the way. When I went away to college, hauled it across the country to Iowa in the days when baggage handlers were absolutely clueless how to board a bicycle (“Dude, does this thing need a ticket?”). We had high times in the Midwest as well, patrolling roads lined with cornfields, cows, and the occasional swine.

Alas, it was in Iowa that I lost my faithful friend. It was stolen off the porch of my first apartment building, a 19th century Cape Cod flipped to create cheap student housing. Snatched from the wooden stair rail it was attached to, I never saw my banana yellow bike again. And I learned a valuable lesson: Never trust the wooden stair rail of a 19th century Cape Cod.

The next bike I got was when my husband and I were newly married. We lived in Northern California at the time. We spent many a weekend patrolling the bike path that paralleled the American River. I remember he outfitted his pedals with racing clips. Brave man. Knowing that my feet were unlikely to adapt to the trappings, I declined. I wanted the assurance that, if I ever had to jump off of my bicycle because of an impending crash, my feet were free to leave. The thought of being found with a bicycle wrapped around my body, feet still attached, was unnerving. More importantly, there would be some serious “swag” damage. I have my pride.

My last cycle was a “mom” bike, with thick road tires and horizontal handlebars. I only rode that one a couple of times, the last which resulted in horrible crash alongside a busy expressway. You would’ve been proud of me, though. I got right back on the bike, pedaled 3 miles, and arrived at my destination (a ladies meeting at church) with skinned knees, hands and bloody forehead. Yeah, God put the kibosh on that pride thing but quick!

That happened in 2001, two years before my MS was diagnosed. I haven’t ridden a bike since. I miss the feeling of exhilaration cruising downhill at top speed, the amazing sense of accomplishment of conquering a steep climb, the freedom of feeling the wind blowing across my face, fresh air energizing every cell in my body. The closest I get to that feeling these days is hitting the streets in my power chair ramped up to full speed. We don’t do downhill. I digress…

Fast-forward to 2010. After long, full careers in the military and ministry, my husband retired and moved us to Charlottesville, VA. We needed to slow down. We needed room to breathe. We needed to find connection with a community that understood the challenges of living with MS. Charlottesville not only had top medical care through the James Q. Miller MS clinic. It was also home to a well-established chapter of the National MS Society. Golden!

On June 3, I received a phone call from the chapter. “There’s a group of cross-country bike riders coming through Charlottesville today. Would you mind coming by to meet them? I think you’d be an inspiration.” (Nice move. Flattery will get you anywhere. Uh oh! There is that vanity thing again. Ha ha!) Nevermind inspiration part. I was going to meet some people who were able to do what I now only dreamed of doing. And they were doing it to fight MS. “I’m there!,” I shouted. We jumped in the car (okay, my HUSBAND jumped in the car after tossing me in the passenger seat) and sped to the meet up location.

My heart raced at the thought of just seeing bicycles. And to meet a crew about to traverse the United States? Beyond exciting! This was something I always wanted to do. Even though my physical ability was nonexistent, the thought of “riding” vicariously was more than enough for me. And they were doing this to fight MS. Awesome!

After drooling at the site of shiny, shiny road bikes, I got to meet some of the riders: a recent college graduate; a father and his two sons; a woman recently diagnosed with MS; a sixtysomething gentleman riding for a friend. And one swarthy fellow who just liked to ride his bike and stop for a brew every 100 miles or so. They were happy. They were humble. They were SO looking forward to the journey. SO pumped to ride for the cause. We shared photo ops, hugs, high fives and handshakes and promised to keep in touch with each other via social media. There was an immediate connection among us. And as anyone in the MS community will tell you, connection is the #1 enemy of MS. Connection counts!

For the next 60 days, I followed them via Facebook and Twitter. I swooned over every picture. Smiled at every triumph. I sent encouraging tweets and posted about their journey all along the way. And I cheered with tears in my eyes the day they dipped their tires in the Pacific Ocean. 3500+ miles coast-to-coast. All to bring awareness to the cause, to help those in need through service projects, to deliver much-needed funds for ongoing research, programs and services. All in hopes of a cure.

Bike the US for MS. I’ve followed this amazing group every year since that very first meeting in 2010. They come through Charlottesville every June 3, and every June 3 I do my best to be there to welcome them. (Yes, I will be there this Saturday… Woo Hoo!) To thank them. To have just a moment of camaraderie with others who use wheels for transportation. (Wheelchair. Power chair. Bicycle. We all gots wheels!)

So that’s why, for the next 60 days, your Facebook news feed will show my “likes” of all these pictures of people riding bicycles. These are my people. My sheroes and heroes. My warriors in the fight against MS. And keep your eyes peeled. One year you just may see me among them. Ride strong!

Wednesday, March 29, 2017

Infusion Day

Infusion Day? Oh, it’s the best!
Every 28 days through the year
A new lease on life as I battle MS
Tysabri keeps me in gear.

Without it I feel very strange 
Thinking slow and memory pale
Like a car that needs an oil change
My movements seem slow as a snail.

My Hero waits patiently all the while
Three hours from start to finish.
Quick with a joke to make me smile
Sharing bites of sushi with spinach.

Once I’m infused, the energy’s back!
I’m wired and ready for sound.
Memory clear, I’m sharp as a tack
A new lease on life I’ve found.

103 infusions, still going strong,
103 sticks I've endured.
Nine years of fighting. Yeah, way too long.
Won’t end until there’s a cure.

Thursday, March 23, 2017

Seeing Clearly through Brain Fog

Brain fog. That vague feeling of ineptitude. You’ve got the ideas. You’ve got the thoughts. And you know the words are in there somewhere. But you just can’t get your ducks in a row. You can’t string your thoughts together. You have the words on the tip of your tongue, but they are falling off the precipice of that mental block you’ve hit.

Brain fog is, clearly, a very real condition. Everyone experiences this cognitive hiccup from time to time. However, it’s a particularly prevalent symptom of those living with MS. In fact, more than half of all people with MS develop problems with this and other cognitive functions. Difficulties include…

  • ·        Information processing (dealing with information gathered)
  • ·        Memory (acquiring, retaining and retrieving new information)
  • ·        Attention and concentration (particularly divided attention)
  • ·        Executive functions (planning and prioritizing)
  • ·        Visuospatial functions (visual perception and constructional abilities)
  • ·        Verbal fluency (word finding)

Yesterday I had my weekly physical therapy session at HealthSouth. I just started back again after a two-year hiatus, way too long to be living with MS without professional input. My PT (physical therapist) is a rock star! She’s super knowledgeable about MS and employs the latest methods to keep her patients fighting strong.

During therapy, I lay on a therapy mat while my PT moves my limbs in order for the brain-body connection to occur. My job is to think through the motions as she does them manually. The hope is that my legs and brain will partner together to allow independent movement. I really have to concentrate. If I don’t, no relationship is established between the brain and the body.

I was having a brain fog day, so I had to work especially hard to not have my attention divided. Did you read my “Decisions?…” post the other day? Yeah, so you see how my brain works and how I can be easily distracted.

She put my leg up on her shoulder to stretch it. While doing so, she purposely said, “I’m putting your leg up on my shoulder to stretch it.” My job is to hear the words and see the action in my mind, “willing” my leg to do it independently. But my neurons began to wander and I’m distracted by my thoughts…

“Whoa! She’s really stretching that leg. I bet this is how a rubber band feels when it gets stretched. Rubber bands. I like the little red ones. They remind me of SpaghettiOs. Tasty, too! I should know. I had my stomach pumped when I was 3 after eating a whole bag of them…”

“So, how does that stretch feel, Angela?”

Whoops! My attention snaps back to the moment. I’m supposed to be concentrating on making a brain body connection, aren’t I?

“It’s okay. Not too bad.” No, really. It wasn’t bad at all.

Next, she asked me to lie on my side in a relaxed fetal position. “Now, take your free arm and punch it forward, then pull your elbow back.” Right! Arm forward. Elbow back. Got it!

I laid there motionless for a second. Processing, processing, processing…

“You okay?,” she asked quietly. Perhaps she thought I’d fallen asleep.

And then it happened. Connection made! I punched my fist in front of me like I was pushing a door open. Then I pulled my fist back like I was closing the door, pulling my elbow behind me. Success!

Now she asks me the $64 million question…

“Tell me, what muscles do you feel yourself using when you do that?”

Oh, c’mon! Now I’ve got to use my “word finding” skills, too? Okay, you can do this. Think, Angela. Think!

“My abs!,” I said resolutely. “My abs.”

A moment of silence.

“Yes! That’s right!,” my PT exclaimed. “You’re using your abs to balance yourself on your side and to move your arm back and forth. Good job!”

So, in spite of brain fog, I was able to get through my PT session successfully. And the bonus? I remembered the exercises from yesterday and was able to duplicate them again this morning. Booyah! Take that, brain fog!

Monday, March 20, 2017

Decisions. Decisions? Decisions!

Congratulations! You just exercised your cognitive skills. How? By clicking on the link that brought you to my blog. You had to make a conscious choice of what to read at this very moment and I, for one, am honored that you would choose my random meanderings about life with MS.

I never quite understood what was meant by the term "cognitive skills" until MS. That's because difficulty with cognition is very common in people with MS, so you better know what it is you're up against. Difficulties include attention span, memory, producing and understanding language, learning, reasoning, problem solving, and decision-making. I've had run-ins with every one of these cognitive hiccups, but the bane of my existence is decision-making.

Some people like having lots of choices. They are the ones whose mantra is "variety is the spice of life". That's all well and fine if you're accustomed to adapting quickly and making decisions on the fly. My MS makes it hard for me to be spontaneous. There is no such thing as a quick decision.

Let's say you and I go to Ben & Jerry's for a double scoop sundae. My treat! You step right up to the counter and order a Cherry Garcia Waffle Cone Sundae. Wow! I'm so impressed with your depth of knowledge of the menu choices and your unflappable resolve to get exactly what you want. I, on the other hand, am completely overwhelmed by the flavor selection (not to mention having to sort through all the clever names).

Now you might say, "Well sure, Angela. Who wouldn't have a tough time deciding between all those delicious flavors?" True. But then not everyone has MS. My thought process goes something like this:

"Whoa! They sure have a lot of flavors here. I like chocolate. Let's see what they have in chocolate. Hmm... Chocolate. Chocolate Fudge Brownie. Chocolate Chip Cookie Dough. Cheesecake Brownie. Oh, that sounds good. I like cheesecake. Do they have any other cheesecake flavors? Wait a minute, if I'm going to eat cheesecake, I should go to Cheesecake Factory. But the closest Cheesecake Factory is an hour away. I want something now. But do I want ice cream? Maybe we should go to Five Guys first. I wonder who the five guys are. Are they brothers? Are they friends? If one of them is a woman, is it really fair to call it Five Guys?"

By this time the server has grown quite impatient with my inability to decide and the mom with a trio of rambunctious kids is giving us "the look" trying to hurry us along. Tasting doesn't help. My tongue is as confused as my brain which controls my tongue. (Got that? Great! Your cognitive skills are super sharp today!)

In an effort to maintain the peace, you gently suggest, "How about something simple like Chunky Monkey? I hear that's really good!" My mind begins to spiral out of control:

"Ba-Ha-Ha-HA! Chunky Monkey: the King Kong of Ben & Jerry's flavors! King Kong. What a great movie! They've remade that so many times. My favorite will always be the original because the animation is so hokey. I especially liked the fight between King Kong and the dinosaur. Classic! I love classics. What would be classic ice cream? Chocolate, vanilla and strawberry. Neapolitan ice cream. Didn't like the chocolate. The strawberry tasted fake. The only thing reliable was…"

The tension in Ben & Jerry's is palpable. The silence (with the exception of the Britney Spears Muzak droning in the background) is deafening. Any moment now the server will lose his minimum wage required smile and the mom will wind up her Mommy backpack to take a swing at me.

"I'll have a scoop of vanilla on a sugar cone."

Sigh… Once again I succumb to taking the path of least resistance because decision-making is just so hard for me.

I'm getting better, though. I've come to understand that decision-making takes a lot of work. It takes focus ("I am here to get an ice cream sundae."), memory ("My favorite flavor is chocolate."), resolve ("I am getting a hot fudge sundae with chocolate ice cream."), and a healthy sense of humor ("This'll be a sugar high worth posting on YouTube!").

So let me know when you're ready to go to Ben & Jerry's. I'm ready!

Sunday, March 19, 2017

Too Much of a Good Thing: Sensory Overload

I didn’t go to church today. I know my church family is totally confused. “I just saw her at the Women's Retreat yesterday. She looked fine!” Unfortunately, looks can be deceiving and, with MS, they often are.

There are a lot of MS symptoms that I experience that no one sees. Sure, I’m in a wheelchair. My left arm is permanently stuck at a 45° angle. My hunky husband lifts me into and out of the car, dresses me, and feeds me because my mobility and dexterity are severely impaired. Those are things you see.

What you don't see is the difficulty I have being in social settings. Stimulating conversations; the sights and sounds; cold weather and warm hugs; great smelling food that’s tasty, too. All these can cause sensory overload, a very real and frustrating symptom of MS.

Having to deal with sensory overload in a social setting really cooks my grits. I used to be a total extrovert. I loved being around people. I enjoyed the interaction. I thrived off the energy. My sharp wit served me well. But now, with MS, I find I function better in really, really, REALLY small groups, like three or less. If there are more than that, I just get real quiet and watch what’s going on. Difficulty with cognition makes me shy away from jumping into conversations because I’m afraid I won’t be able to keep up.

I’ve tried to master a few techniques to navigate large group settings. I speak when spoken to. I keep conversations short. Sometimes, when I can’t hear the person I’m talking to, I simply match my facial expressions to theirs so it looks like I’m really engaged in the conversation. I have to be careful doing that, though. Sometimes it backfires. Once someone was telling me about the death of her beloved parakeet. I smiled the whole time she was telling me her sad story. But it was an honest mistake. She kept smiling, so I kept smiling! She left the conversation in tears. And then it hit me: she was talking about a parakeet. I mean, come on. Can you say “parakeet” without smiling? I think not.

So back to my original story: what exactly happened over the last couple days to trigger the hermit within me? Social encounters of the overstimulating kind.

On Friday I decided to accept a last minute invitation to attend a large luncheon. The difficulties started in the parking lot. First sensory overload: cold. I hate cold. Think of someone dousing you with a bucket of ice water on your head. Shocking, right? Cold air sends my body into super spasticity. Every muscle tightens up. It’s uncomfortable. It hurts. “But wait… Weren’t you wearing a coat?” Of course not! That would be a double negative on my “cute” quotient! I have my pride. I left it in the car to put on later. (Don’t judge. Remember, I’m cognitively impaired.)

Once inside, the questions began: “Is this your first time here?” “Where are you sitting?” “How are you?” (A fully loaded question that requires major cognitive function to answer because I have to use my decision-making skills to choose what to say. Do I tell you about the self-inflicted pain I just endured coming in from the cold? Shall I tell you my March Madness bracket? Should I give you any answer all, or just go with the perfunctory, “Great! How are you?”). So many questions, too few healthy neurons. But I soldiered through…

The luncheon itself was lovely. It was wonderful to catch up with old friends and delightful to make new ones. The food was fabulous. The speakers spot on. The only rough spot was the dining music, provided by a bagpiper in honor of St. Patrick’s Day. Really? It drowned out every conversation in the room. Even my usual tactics were impossible to employ because I couldn’t hear what anyone was saying. Let’s book a jazz quartet or string ensemble next time, shall we?

Then it was back out into the cold to get to the car. I slept hard Friday night, but not long enough. Show time Saturday morning was 8:45 AM, which meant getting up at 7 AM. (Jesus take the wheel…)

Saturday morning dawned cloudy, but my excitement had me feeling sunny inside. After weathering the stinging cold once more to get to the car, I enjoyed the beautiful ride to the conference facility nestled in the foothills of the Blue Ridge Mountains.

Warmly welcomed by the other ladies, curious questions began again. I’d had good practice the day before, so I was prepared. I think I even asked a question or two of my own. (Way to go, Cognitive Super Chick!) The morning session was really good. It soothed my soul to listen to the inspiring, edifying presentations. Several voices to listen to. One person at a time. Quite easy to follow… sort of.

In the meeting room there was a blazing, crackling fire in the large hearth. It was pretty, but the sweet, smoky aroma reminded me of a campfire. The smell was nice, but distracting. I kept waiting for someone to bust out some hot dogs or, even better, the makings for s’mores. Foodie distraction. The worst kind.

In order to stay focused during the presentations, I started doodling. You know, like you did in high school? Doodling when you were supposed to be listening and taking notes? Doodling helps me focus on what’s being said. The funny thing was that one of the speakers even mentioned doodling during her presentation. “Sometimes it’s easier for people to process information if they are doing something other just listening, like washing a car, eating food, or doodling.” BUSTED!

The afternoon session of the retreat was held outside in the sunshine. We were surrounded by nature, which always helps me to feel centered. I was super focused. I got a lot out of the prayer exercises and participating in Holy Communion. I left the retreat feeling revived and refreshed.

I slept hard again last night, recovering from the overstimulation of every sense in my body. It was a deep, happy sleep but, again, not long enough.

So I woke up this morning, Sunday, with a sore throat and feeling spent. Sensory overload. It takes a lot out of this girl. Time for some R&R, chamomile tea, and s’mores. What? You thought I forgot about that?