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?