Happy Myasthenia Gravis Awareness Month

June is Myasthenia Gravis Awareness Month and since I’ve been mentioning it so much over the last year on this blog I wanted to take this opportunity to explain this obscure condition that needs more awareness.

I had never heard of MG before June of last year until I glanced at the results of some of my blood work and saw the words “serological Myasthenia Gravis.” When I saw my neurologist last month, he explained that he was looking for the antibodies related to autonomic dysfunction but accidentally discovered that I had the antibodies typical for MG. I imagine that some or maybe many with MG fall into the condition through happenstance. If you laughed at “fall,” then you are acquainted with this peculiar disease.

Since then, I have learned so much about this condition. MG is a rare neuromuscular autoimmune disease that causes weakness in voluntary muscle movements. It’s not as rarely diagnosed as POTS and has an established history of research and treatment. Like other autoimmune diseases, the immune system sees the body as a foreign entity with MG and begins attacking itself. It does not attack the muscles but specifically the receptors that allow muscles and the brain to communicate. Maybe you can see the problem here. Here is a great infographic that does a better job explaining this. I’m just a Humanities nerd, so the science bit is always above my head:

As mentioned above, common symptoms include droopy eyelids and weakness in muscles that affect facial movement, chewing, breathing, swallowing, talking, and limb mobility. MG was termed the “rag doll disease” because of the severity of the muscle weakness. The ocular symptoms are the most common symptom in MG, and some only experience the ocular symptoms. The level of disability and severity of symptoms can really vary person to person. Men, women, children, and even animals can get the disease, and in some cases the disease can go into remission.

Like Dysautonomia, MG can be considered an invisible illness yet the symptoms can manifest visibly. As with most complex conditions, diagnosis can be tricky. I am going on year three of working toward a diagnosis but for some it can take many years. There are blood tests that can identify the antibodies that are specific to MG, EMG tests, breathing tests, and your medical history can help your doctor determine if you have this disease. Myasthenia is usually only fatal during a “Myasthenic Crisis,” which means respiratory muscles become paralyzed and the patient needs ventilation.

About two and a half years ago, I started having difficulty walking and my breathing problem that started with POTS was getting worse. I tried to brush it off for a long time. When I saw my doctor’s NP, she also brushed it off. Yet, my mobility was rapidly declining. I had to start driving between all of my classes I was teaching and eventually, after much fighting, fretting, and cursing my fate, I started using a cane. Then a few months later, I had to get a walker and then over the last 9 months, I've had to use a wheelchair. My breathing problem has also declined rapidly.

My doctor had me start taking Mestinon, a drug commonly used to treat MG. This drug provides the acetylcholine that the immune system attacks in MG so that the brain and muscles can communicate once again.  My breathing improved immediately with this drug, and I’m dependent on it to breathe normally. From August-November, I spent almost every day in bed, but since I started the Mestinon I only have to lie in bed on bad days or if I push myself too hard. It has given me some quality of life back. Yet, this is a short acting drug and has to be taken every 8 hours. It treats the symptoms but does not treat the mechanism of MG by stopping the body from attacking itself. 

I have documented my journey with diagnosis extensively on this blog because it’s been a difficult ride. I have the antibodies but the number is small and my EMG results were mostly normal. If one the antibodies for MG, it is considered a “serological diagnosis." Some with MG are "seropositive" with the antibodies and some are "seronegative" who test negative for all of the antibodies. I also did a spirometry breathing test earlier this year and that was very abnormal. My neurologist explained that it’s still indeterminate at this time. I’m also having some problems such as intense balance issues that are not typically related to MG. Like I said, the journey to diagnosis with many complex conditions is long and bumpy.

Treatment usually includes Mestinon, immunosupressants like Prednisone, IVIG, and plasmapheresis. In my experience with Dysautonomia, the treatments and research about the condition have been extremely limited and recent. There are “common” treatments for Dysautonomia but essentially every treatment is “off-label,” meaning there are no drugs to treat it and doctors use drugs for other conditions that have beneficial side effects for Dysautonomia. There are established treatments for MG and it has a much longer history of research. Yet, these treatments for MG can come with serious side effects. My doctor explained that this is why he has been waiting to be absolutely certain before diagnosing me. I know that many have also heard this from their doctors. I have learned an important lesson about the stakes involved in diagnosis this year. 

The thymus can play a role in Myasthenia and about 15% of people require a thymectomy. The thymus can become enlarged or have tumors, either benign and rarely malignant, called "thymomas." Removal of the thymus offers the best chance of remission of symptoms compared to other treatments. I have even heard recently of doctors removing the thymus even if there aren’t any problems with it because that can be beneficial sometimes. Just a few days ago, I had a CT Scan of my thymus to see if it needs to be removed.

Yet, the fact that there is treatment provides hope, and hope is a treatment in itself.

Maybe you found this blog and this post when searching about MG, or POTS, or chronic illness, and information and knowledge is a vital step in learning about conditions you may have and all of us raising awareness about invisible and rarely diagnosed conditions. Yet, knowledge is only a piece of the puzzle.

When you get a diagnosis, arming yourself with knowledge is only half the battle. Something that I wish someone would’ve told me when this chronic illness journey began in 2011 is that acceptance is your greatest survival tool in your arsenal in living with illness. There will be self-blame, guilt, and profound disappointment, but acceptance can help you live a full life no matter what illness throws at you. Someone in the great circle of being pointed their finger and chose you as the lucky winner to bear this absurd burden. I try to remember this is not my fault. I didn’t choose this, but I accept this burden and seek to make a life bearing it with grace and dignity. These are hard-fought lessons I am continuing to learn and I think they deserve a place among the science and physical realities of any illness.

If you are out in social media, check out and participate in the hashtag #IhaveheardofMG, a movement to give MG more awareness and a face for the condition. 

I leave you with this great video from 1935 that shows the early days of the discovery of acetylcholine treatment for MG. Wait until the end when the woman begins to mop. Every time I attempt to do house work I think of the smile this woman has on her face because I couldn’t do it without that drug either. 

Also, check out the links section of the blog for more information about Myasthenia.

Desperately Seeking Accessibility

I’ve written extensively about living a version of Kafka’s Metamorphosis, waking up in a brand new body one day. Yet, I also woke up to a new world, a world that looks the same but is nothing like the world I used to live in.

I’ve spent most of my life as an able-bodied individual who rarely considered the challenges of the disabled. 5 flights of stairs? Easy. 4 mile hike to the top of a mountain? Done. One available parking spot that’s a block away from where I want to go? No problem. It wasn’t that I didn’t care or was uninterested. The concerns and challenges of the disabled often weren’t part of my day to day life. As I’ve become increasingly more and more disabled over the last few years, those challenges have become part of my life and have given me a completely different perspective on the challenges of those who have been disabled most or all of their lives.

The US passed the Americans with Disabilities Act in 1990, which protected the disabled from discrimination and required that public and private facilities be accessible. It was a transformative piece of legislation that gave the disabled the same protections the Civil Rights Act of 1964 afforded to populations that were historically marginalized. I also live in a state that is considered one of the most accessible in the nation. I am fully aware that I enjoy the fruits of many hard-fought battles to give the disabled this level of accessibility. Yet, as with every law and especially civil rights laws, the battle doesn’t end after passage.

Leaving the house when you are disabled requires careful planning, logistics, and execution, something I never had to worry about when I was able-bodied. Going out almost always means I’ll need my wheelchair now. Places my husband and I have been going to for much our lives present complex challenges now. Before we go anywhere, especially some place new, we have to consider whether there will be steps, will there be an elevator, will my wheelchair fit in the space, how close can we park, what do we do if all the handicapped spaces are taken, will there be a ramp? Although businesses are required to conform to ADA standards, you will find that those standards are not always met or are met haphazardly. An important question is if the business doesn’t meet the ADA standards or is inaccessible despite meeting standards, what do you do?

I read an article about a year ago about a local woman who was suing multiple local, small businesses because they were not ADA compliant. My first response was horror. The article did not paint her in a positive light and I worried about the public image of the disabled and whether actions like this would threaten the profitability of small businesses.

Normative attitudes and media representations of the disabled are fraught with ableism and ambivalence. A disabled person can be held up as a one-dimensional source of inspiration for the able-bodied and then in the same breath disparaged as a “leech” on society to justify drastic, inhumane cuts to disability benefits and other social services. As with all stereotypes, these images can be damaging and rarely reveal the entire picture of what it means to live with a disability.

Disability advocates have worked to challenge these images. Stella Young gave a TED Talk titled “I am Not Your Inspiration, Thank You Very Much” that has over 1 million views on the TED website (click here for her talk). She gave a humorous and enlightening challenge to this inspiration stereotype. Slate recently posted an article deconstructing some of the commercials that aired during the Super Bowl that also used this stereotype. We all love inspirational stories, but the disabled are often used as a prop to remind the able-bodied “if they can do it, you can do it.” The contrast is the myth that the disabled and ill exploit systems for personal gain. Stereotypes breed silence and dismissal. 

When the disabled sue these businesses, there may be compensation but action is also taken. Yet, is this the only means to achieve these ends? 

When I shared my horror about the story of the local woman, one of my good friends directed me to a story from NPR’s This American Life titled “Crybabies,” which discusses one man in particular who has made a huge profit from suing non-ADA compliant businesses. It’s a great listen if you are interested in this issue. Important moral questions are raised and they highlight that there is no regulating body that visits businesses to ensure they are ADA compliant. As history has taught us, we cannot rely on others to fight our battles, and some have taken matters into their own hands.

Here is the section of the podcast that discusses this:

The question I think we should be asking is what can we do as a society to ensure everyone has access and protection under the law. The fact that these individuals are suing companies is a symptom of a larger problem.

I've only been a "crybaby" once. I've experienced limited accessibility many times, but one in particular irked me especially. Seven months ago when I could still leave the house regularly and drive, I took my mother to Target to help her find some clothes. My mother cannot drive and needs help with basic tasks. She couldn't do it on her own. 

This was my first time using the electric cart at Target. Before this, I would usually tell my husband “I got this. I can walk around the store on my own. Easy” which inevitably led to me standing on the cart and my husband pushing me to a seat in the store. It would have been fun if I wasn't in such bad shape from forcing myself to walk. If you have ever been in most clothing stores, you have probably noticed how tightly-packed each section is. Just getting a shopping cart around can be challenging. I realized very quickly that the electric cart the store provided did not fit in about 40% of the store. I could not help my mother find items, and she could not do it on her own. It became a steaming pile of failure.

I eventually got trapped in one of the sections, and I became so aggravated I went full Hulk. I started slamming into things to get out, drawing onlookers and stares. I couldn’t get out of the store without riding that cart so I didn’t care if I knocked everything over so I could leave the store. Like any red-blooded American, I like shopping and I really love Target, but I haven’t returned since. I emailed Target right after this to express my disappointment. Their response made me more angry.

It took them months to respond and when they finally did, they told me to “find a customer service representative” to help me be able to look at things in these sections. One: I was trapped so how I was going to find someone to help me? Two: I don’t want to ask for help just to look at a pair of jeans! 

Should I bring a radio and learn Morse code so I can send out distress signals throughout the store?  

Handicapped lady trapped in the sock section. Coordinates unknown. Send help. Now.

I combed through the ADA to see if businesses were required to have aisles the disabled could navigate in all parts of their store. They do not. As long as the disabled can ask for help, then it’s legal for parts of a store to be inaccessible. I'm not done with Target. I still want to communicate to them I don't think this is enough. 

I learned a valuable lesson from this experience: the disabled do not want to have to ask for help, especially for something simple many of us take for granted. This is something I had never realized in my able-bodied life. I started to empathize with these individuals who sue businesses who are not ADA compliant—though I doubt I could go that far. There often can be easy, straight-forward fixes that could assure accessibility. I think most often businesses don't realize they are inaccessible so being a "crybaby" may be the only way for them to know this.

Some advocates are creating other solutions. A disabled man with MS created a website and crowd-sourcing app called AXS Map that allows users to rate businesses based on accessibility, at AXSmap.com. This makes the difficulty of leaving the house, especially going to new places, simpler. Here is the video that outlines how the app works.

I don’t often get to leave the house, but when I do I will use this app to rate each business. There aren’t any ratings for businesses in my town so I hope I can get the ball rolling. I hope you also find the app useful too.

Disabled and chronically ill individuals are also consumers. We have the power to make decisions about where we spend our money and my studies in consumerism have taught me that those decisions can have social and political ramifications. Handicapped parking spaces, ramps, elevators, hearing or visual aids, handle bars, and accessible aisles may present challenges or inconvenience to the non-disabled, yet these things can be lifelines in an ocean that is designed for the able-bodied. I never fully grasped this until I became disabled.

Creating a more accessible world and some accountability for accessibility will continue to require effort. An accessible world is a world we can all partake in, and that is truly something worth fighting for.

What Helps: Mobility Aids

This post is partly courage-training and partly the continued story of metamorphosis. Getting over that first hurdle—physically and mentally—to start using a mobility aid can be daunting so I wanted to share my experience. Many years ago, a lifetime ago even, I was a gymnast. I was the tallest on my team but I was a powerhouse. Floor and vault were my events. Let’s pretend uneven bars never happened. I used to soar in the air. We had a trampoline in our backyard and I would experiment and create new tricks all of the time. I remember what it feels like to fly.

For years, I was an avid hiker. My husband and I live two hours away from Yosemite National Park, and we would go hiking often, usually difficult, all-day hiking. On the long way up, sometimes you question why the hell you would ever choose such torture, but when you get to the top you feel exhilarated because you literally just-climbed-a-motherhumping-mountain.

Having to use a mobility aid before my geriatric years wasn’t my plan. Not everyone with POTS/dysautonomia needs a mobility aid, but some may be dependent on them. With dysautonomia, the body is struggling to maintain homeostasis and keep blood moving to essential organs, so movement and exercise can be exhausting and taxing. Gravity is a bitch for the vertically challenged, and sometimes the only way to be mobile and leave the house is to use a mobility aid. When the realization sets in that some kind of mobility aid is needed, it’s a disappointing and scary prospect. The physical struggle can pale in comparison to the emotional struggle to accept having to rely on a mobility aid. This is an invisible illness, and when you take that first step to get aid, it is no longer invisible, and some may question why you would need it if you “look fine.” Whatever our preconceived notions are about what disability and illness “looks like,” those notions are wrong.

I suddenly started having trouble walking a year ago. Since the POTS started, I have struggled to be able to stand still for any length of time but I could walk. Walking more than 30 feet at this point is extremely exhausting and precarious. My doctors have told me that the walking issue is not related to dysautonomia, so I am once again on the long road to diagnosis to figure this mystery out. Comorbidity and compounded illnesses are typical with dysautonomia.

I started using a cane in November last year, but I needed one long before that. Almost all dysautonomiacs have been told by some doctor somewhere somehow that it’s “all in your head.” Being told this when you are unable to function as a human being can permanently warp how you mentally navigate your disorder unfortunately. Unraveling the stranglehold this kind of invalidation has on your psyche can be a battle. I'm still trying to unravel it, so I spent months trying to pretend it wasn’t happening and believing that it was all in my head. 

When I finally relented and bought the cane, I was relieved. It has made getting around much

Sitting FTW!!

easier and I use it almost all of the time.  I also put off getting a disability placard and it has also changed my life. On the bad days, the VIP parking makes all the difference. I’m learning to let go of my pride and let my desire for a higher quality of life take over. The walking problem has worsened so I upgraded (downgraded?) to a walker, and I am also using a wheelchair. I can either leave my house more and use my wheelchair or walker or I can try to walk longer than 10 minutes and have to spend the next few days bedridden. Those are the breaks. Now I have to figure out how to decorate them. I bought my cane and wheelchair at a local medical supply store, but there are some websites with mobility aids, and I really want a cane from fashionablecanes.com.

For the chronically ill. you’ll encounter a variety of responses in the world when you have your cane, walker, wheelchair, etc. You’ll get

1.      Double-takes: “Why does she need that if she looks fine?” “Is that cane a fashion statement?” “Why is she pushing her grandmother’s walker?”

2.      Stares: Your days of blending in are over. At least look fabulous as people stare at you.

3.      Looks of terror: When people see me, sometimes they jump out of my way, rush to open the door, tear their children from my path. This comes from a place of kindness and can be pretty amusing.

4.      Questions: People will ask you about it. I don’t mind that much but I have never found a succinct way of explaining it. I was at a store with a friend recently and a guy said “You look too young to use that walker.” So I said “Oh, I’m older than I look. I’m actually 75.” Depending on how snarky I feel that day, my response varies. People will often ask if I was in an accident. Sometimes I’ll give them the 10 minute explanation of what is happening. They asked for it!

5.      Derision or Annoyance: This one is rare, but it can happen. If you are a human being in the world, you’ll encounter douchebags everywhere. Some don’t understand what it is to have an invisible illness and refuse to try to understand. These people have worse problems than needing a mobility aid. Try to smile at their ignorance.

6.      Sympathy: This one makes me the most uncomfortable. I don’t feel sorry for myself so please don’t feel sorry for me. I don’t mind if you want to hold the door open for me though.

This experience has given me a profound appreciation for the struggles of those who have been disabled their whole lives. Being disabled makes everything more complicated. Before this, I had no idea what the disabled went through on a daily basis. I had no idea how people treated them. I had no idea what a constant struggle it is. I had no idea how much people will focus on your difference. 

When I finally accepted that I needed a mobility aid, my life changed for the better, but I still resist every change along the way. I constantly tell myself “You can hold on to your pride and suffer and be home-bound, or you can get out in the world and try to live a more full life. You are not weak when you use resources. It takes an incredible amount of courage to take steps to protect your health.” Find the words you need to tell yourself to let go of whatever is standing in your way (no pun intended).

I may be kind of broken, but I can still do this

I may use a walker, but I’m still strong and athletic. Whatever abilities you had in the past do not matter anymore, but today does. Don’t let others' perceptions determine how you manage your health and the choices you make. You can take charge of your health and make a new life in the body you have now.