Thursday, September 26, 2013

Can you die from myasthenia gravis? Part 3

In Part 1 and Part 2, I discussed two ways myasthenia gravis can prove fatal. Here is the third: falls.

Myasthenia gravis makes walking unsteady. Ha! Unsteady. The truth is, MG can turn you into a card carrying member of the Monty Python Ministry of Silly Walks. I have several silly walks, depending which muscle group is offline.

If MG played fair, it would weaken muscles symmetrically, which it doesn't. It would weaken the same muscle groups every day so you could adapt, which it doesn't. MG is not fair.

The more you move, the weaker you get. This has got to be the most frustrating aspect of life with MG. People move all the time. We blink. We use spoons. We reach for things and pick them up. Before I had MG I could move without thinking about it. Now, I think things through.

The way MG weakens muscles makes falling particularly dangerous. MG tricks you into thinking you're fine. Walking begins like it always does, but then something shifts. A muscle in your trunk goes offline and you lose your balance. Or, your left thigh muscle is no longer operating within design specifications and has switched off. Your entire center of gravity is thrown off, and down you go.

This can happen without warning. I used to fall a lot. Then I got some help.

Honey chose to be a service dog. When she was about eight months old, we went for a walk. Suddenly Honey started pulling, dragging me toward a park bench. I sat down, and she sat at my feet. Not wanting to sit down, I got back up. Honey jumped up and pushed me back down on the bench. She did this about four times before I decided to pay attention to how I was feeling. My leg muscles felt like rubber bands. Honey knew my muscles were weak before I did.

She learned to give me a specific look that says, "Mom, sit down." I learned that she was right.  Honey taught me how to pay attention to little warning signs a fall is coming. When I start to stumble, it's time to sit down. When I feel unsteady, I need to rest. Honey is retired now. She spends her time hanging out with me and being my friend. She's 11 now and has earned her rest, but I can't thank her enough for what she taught me about falls.

Cuing into your own body is key here. What do weakening leg muscles feel like? What are the early warning signals? No one else can tell you what your MG feels like. Your own wisdom will protect you from falls, and so can tools like canes, crutches, walkers and powerchairs. I have all of them and I use all of them, depending on how my legs are working on a given day.

The hardest part about using tools is mental. Using a tool identifies you as "disabled." That outward sign of an inner reality may be hard to take. Questions from people, "Why are you using that? You don't really need that thing, do you? I saw you walking yesterday and you were doing fine." All of this sucks. MG is rare. Almost no one has it and most people have never heard of it. What do you mean the more you move the weaker you get? That's just crazy. You know what you need? A good exercise program. My Aunt Sadie had something like that, but she took these herbs...


Sometimes I wish I had a big, flashing "Stop Talking. You're Not Helping!" sign on my forehead. Click a button and that sucker would light up. Most people don't know what you're going through, and they won't get it. What I don't want for you, or anyone else with a new physical disability, is to decide the words from strangers matter more than your own safety. If you need a tool to prevent falls, use one. Fear of what other people will think, or fear that you're making a big deal out of nothing, and refusing to use tools, is one way myasthenia gravis can kill you.

Pay attention on stairs, wet surfaces, transitions from rug to hard floor, ladders and bathtubs. I had to stop taking baths after I realized I can't get out of a bathtub safely. I need to use my arms to lift myself up. Only, being me I forgot this. I knocked my head hard enough to see stars when I slipped.

Be careful when you bend over to pick something up. Ask for help when you need it. Or, maybe you can find a furry friend to be by your side. Service dogs can pick up a paperclip and hand it to you. A service dog can stop you from falling and might even save your life. For more information about service dogs, click here.

Thursday, September 19, 2013

Can you die from myasthenia gravis? Part 2

Can you die from myasthenia gravis? Part two

In my last post, I told you about myasthenic crisis. For newly diagnosed people, MG crisis is a terrifying complication. But, I actually fear choking to death far more than a myasthenic crisis.

2.) Choking

If myasthenia gravis weakens the muscles in your mouth, you will slur your speech. Because I am extra talented, I actually have two different types of slurred speech. The first one is when my tongue extends past my teeth and flattens. I sound like Sylvester the Cat. The second way I slur my speech is when my tongue won’t extend to my teeth. Then I sound like I’m drunk.
Signs > First Aid > First Aid, Injury, Emergency
On days when my speech is weak, that is a red flag warning that my ability to swallow is compromised. I have a weak gag reflex, so I can't always know I've reverse engineered a swallow until I have food in my lungs. I feel like I waterboarded myself and cough until I puke. Choking to death is a possibility, so I have learned to be cautious.

On bad eating days, I choose my foods carefully. I don't eat mixed textured foods. What in the *#$% is a mixed textured food? Anything that is a thin liquid and a solid together, like milk and cereal, noodles and soup. My mouth can either swallow the liquids, or the solids, but not both. Ripe fruit is out of the question.

The real danger is a piece of food getting past my weak gag reflex and cutting off my airway. Meat, popcorn, corn, peas, grapes, hot dogs, anything with little parts, careful. Foods that shatter into crumbs when you bite them like granola bars, and crackers, careful. Even if choking doesn't cut off my airway, getting bits of food in my lungs can cause aspiration pneumonia.  If aspiration pneumonia happens, see cause of death #1.

Eating with MG is tricky. Some things I think will be easy to eat, like mashed potatoes, can be hard because I can't move them around my mouth. Whipped cream has the same problem. It’s fluffy. It melts into a completely different texture. My tongue tends to push it out of my mouth instead of swallowing it. Yogurt has the same problem. Sauces help foods stick together so swallowing is easier. However, nothing helps more than your own inner wisdom. Look at your plate, determine what you could possibly choke on, and eat that first when you have more energy during the meal. Your ability to eat will diminish later in the meal.

On a day when you are slurring your speech, choose your foods wisely. Nothing runny, or sticky, or hard. I have survived on Boost drinks and Boost Nutritional Pudding for weeks. Then MG got bored attacking my mouth and moved on to my legs.

Remember, no matter what crazy thing MG is doing, chances are it will relent at some point. The only thing stable about life with MG is how unstable it is. The good news is, we’re smart enough to outsmart it.

Wednesday, September 18, 2013

Can you die from myasthenia gravis?

People have been asking me, "Can you die from myasthenia gravis?" Most of these people are surfing the internet at 3:19 in the morning. They were just diagnosed with MG and are looking for someone who knows what they are going through. If this is you, make yourself a cup of cocoa and have a seat. I've had MG for 15 years. I'm still here. In 15 years chances are you'll still be here, too. Here's a hug.

The answer to the question, "Can you die from myasthenia gravis?" is yes, but probably not. It's the same answer to the question, "Can you die from driving on the freeway?" Yes, but probably not.

The four ways myasthenia gravis can be fatal are:

1.) Severe respiratory weakness
2.) Choking
3.) Falls
4.) Medication side-effects

Because people are asking about it, I'll be blogging about these one at a time over the next few days. Let's start with the scary one: respiratory failure.

Severe respiratory weakness in myasthenia gravis can happen. This is called a myasthenic crisis and it can be deadly without treatment. A crisis happens when MG attacks the muscles involved in breathing. It feels like someone covered your mouth and nose with their hand and you just can't breathe in.

My last crisis was in 2005. I blacked out while practicing the cello. Darn you Popper Etude Number 36! That piece of music is one of the funnest things to play on the cello, but I got out of breath playing it. I'm lucky I didn't drop my cello.

I was so weak I couldn't cry out that I needed help. I couldn't walk from the practice room to the living room, so I crawled. My family called an ambulance and I spent a few days in the hospital. It was no fun at all.

But, my crisis didn't come out of nowhere. In the weeks leading up to it, my MG symptoms increased dramatically. Only, I was too dumb to know where I was headed. MG symptoms fluctuate. Some days are better than others. What I learned to look for was a pattern. Bad days, followed by worse days, followed by bedridden days, are something I pay attention to. If MG is sliding, I take that as a warning sign.

What causes a crisis? Infections can trigger them, especially respiratory infections. Coughing makes chest muscles weaker. So do fevers. Hot weather can weaken muscles. Surgery, trauma (including emotional trauma) can weaken breathing muscles.

If you are afraid of a crisis, and can't sleep right now, here's a suggestion. Learn how MG "normally" feels in your body, so you can know if something changed. You don't have to be paranoid, but aware. Think of monitoring your MG like monitoring your driving on a freeway. You know how the freeway is supposed to feel. But, sometimes there is bad weather, or that crazy person texting, or that lunatic in the truck. Signaling left and getting into the right lane? Are you insane? Driving closer to me doesn't make my car go faster, you know. What are you a snow plow? Get off my tail, buddy. Look at this guy. The long thin pedal is the accelerator you jerk! The brake pedal is not the clutch. Quit riding it. Hey you, with the bumper sticker, forget world peace. Visualize using your turn signal! That it'd be the change I wish to see in the world.

Wait. What were we talking about? Oh yeah. Sorry. Tangent got lose again. Here Tangent. Here boy. Back into your kennel. Good Tangent.


With MG you know how you feel on a "normal" day. If you feel worse than you have ever felt, if breathing feels like someone stuck a plastic bag over your face, if you feel like crawling instead of walking, call an ambulance. Don't, ahem, ignore all this and do something dumb like, oh I dunno... practice the cello. Darn you Popper No. 36.

Sunday, September 15, 2013

Bolus insulin before or after meals?

One of my favorite moments on my vacation was meeting Diane. Diane is... Oh, let me see if I can get this right. She is my husband's aunt's sister-in-law. We were all vacationing together up in Wisconsin. Diane has Type 1 diabetes and uses a pink Medronic pump

My ping looks bigger, but it cracked me up that we both had pink pumps.

Diane boluses after meals. I bolus before. I was wondering if there is any advantage to bolusing afterward? Do any of you bolus after?

I was taught to test, bolus, eat. I just found it interesting that Diane does it differently. Either way, it was neat spending time with someone else who speaks my language. Carb counting with friends is the best way to go.

Thursday, September 12, 2013

Rest is a verb

For the past few months I have been finishing my book and preparing for a performance at the same time. I've been pushing myself hard to get it all done. I performed on Tuesday and it was fun. It felt good to play my cello for people again.

LadderThis year I feel like I've been climbing stairs without a break. When I have a project to write, it consumes me. It is the first thing on my mind when I wake up, and the last thing on my mind when I go to sleep. If I sleep at all.

In the middle of a creative project I have trouble sleeping. Falling asleep is no problem, but I just can't stay asleep. My mind is active, running up internal stairs.

It isn't unusual for me to work 16 hour days, seven days a week when I am actively creating. The fires of creation drive me to go, go, go, go all the time. I am aware of how unhealthy this is. I just don't know where to find the off switch. This is nothing new.

I was driven as a kid. I woke up before school and practiced scales, etudes, and Bach. Then I went to orchestra rehearsal and school. During study hall I practiced sonatas. After school I practiced orchestra music and concertos before dinner. After dinner I practiced concertos until my mom asked if I did my homework. Homework? CRAP! I'd put my cello down and do my homework. Well, most of it anyway. The next morning, I was up and practicing at dawn again. Nine hours a day during the school week, I practiced the cello.

I always put in at least 20 hours a weekend practicing. My goal was 24 hours of practicing in a weekend. Stacks and stacks of empty Diet Pepsi cans piled up by my cello endpin. I didn't stop to eat unless forced to. I just practiced. No one told me to practice. They told me to stop! But, even when I wasn't playing the cello, I was practicing it in my mind. I was driven by an internal creative need, one I don't understand, but still feel all the time. When MG weakened my arms and playing the cello became difficult, I rediscovered writing. Now writing consumes me the same way practicing used to. The only off switch I have found is finishing a project.

 Life Etudes is finished.

Maybe someday I will discover a balance between creating and resting. Then again, I've been saying that to myself for the past 30 years! My creative mind seems to have two speeds: 300 miles an hour and off. Right now, off feels good. Rest is a verb. Rest is an active thing, an important thing. A few days ago my husband and I went on a vacation to Wisconsin. We celebrated our 24th anniversary. We also rested.

No phone. No internet.

Just tall trees and sunlight by day, and a billion stars at night.

I traveled across a bridge from frenzied activity to quiet reflection.

I found a magical spot to cool the fires of creation.

A chance to refuel the inner wellspring.

And dream of what to create next.

To learn more about my new book, please CLICK HERE. Thanks!

Thursday, September 5, 2013

Memories Matter

The memories always linger...

I watched this video about Fred Stobaugh this week. If you haven't seen it yet, take a look. It's a video about a song Fred wrote for his wife Lorraine, who passed away earlier this year. They were together for 75 years.

My husband's parents were married for 65 years before his father passed away. My parents were married for almost 50 years before my mother passed away. The loss of my mother, and Steve's parents is rough sometimes. Steve's mom died on July 11 this year. Steve's birthday was yesterday and it was the first time in his life his mother didn't wish him a happy birthday.

The hard truth is life ends. The beautiful truth is, love remains in our memories.

On a far happier note, our family just celebrated our favorite aunt and uncle's 60th anniversary this summer. We had a family reunion party that I will never forget.

Those strong examples of long term marriage have helped my husband and I weather many storms. On Monday, September 9th, Steve and I celebrate our 24th anniversary.

This song moved us to tears. It reminded us to pause and treasure the time we have together. I'm glad for all the memories we've made over the last 24 years. I'm also glad that we are still enjoying our life's song together.

For our anniversary this year, Steve and I are going to the little cottage by the lake where we spent our honeymoon. Just like we did 24 years ago, we'll be making memories under the stars, memories that will linger on.

Thank you Fred for sharing this song with us. Thank you Green Shoe Studio for making it all happen.


I am not a doctor. I do not have a medical degree. Nothing on this site qualifies as medical advice. These are lessons I'm learning at the University of Catastrophe. What I find to be correct answers in my classes may not be the right answers for you.

If you are enrolled with your own major at the University of Catastrophe, please consult your doctor, therapist, attorney, auto mechanic, veterinarian, plumber, dietician, arborist, acupuncturist, manicurist, mother, local dairy council, shoe shine boy, or other equally qualified professional, for advice and assistance.

If you email me your personal information will not be shared without your permission and your email address will not be sold. I hate spam. Even with eggs.

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