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Tag: living with MG
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Advice That Helps and Advice That Hurts When You Have Myasthenia Gravis
Advice That Helps and Advice That Hurts When You Have Myasthenia Gravis
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Balancing the Good With the Bad
By Stefani Shea-Akers, as told to Keri Wiginton
In 2013, when I was an English professor at a community college, teaching became difficult. I struggled to speak during class. I had some general weakness and trouble breathing. I had to drive between classes because I could no longer walk between them.
I told a nurse practitioner about my mobility issues, but she brushed me off. I was probably imagining things, she told me. But I knew these symptoms weren’t normal. Most 32-year-olds don’t need a cane, walker, or wheelchair to get around.
My “imaginary” problems progressed quickly. And the following year, after a lot more tests, a doctor diagnosed me with myasthenia gravis (MG).
The Good and Bad of Life After MG
I was a bit of a workaholic in my former life. Things are completely different now. I had to stop teaching because my symptoms are so serious. I’m 40 now, but I lost my academic career in my 30s.
MG also took much of my independence and some of my hobbies. I used to write my own songs. But I can’t sing them anymore. Losing all that, and more, has been devastating.
Yet I’ve learned a deep lesson of gratitude. I find joy wherever I can. I know I never would’ve done that if I didn’t have this disease.
Now I try to savor moments every day. Sometimes I sit in my yard, just watching the birds and leaves. It’s a good form of mindfulness. I started painting again — I never had spare time for my art when I worked a lot.
And I still love music. I play the piano and keep up my vinyl collection.
Plus, I tap into my research and writing background. I use those skills to raise awareness about MG and share stories about my journey through chronic illness.
I also have postural orthostatic tachycardia syndrome, or POTS, an autonomic nervous system disorder. And I advocate online for the dysautonomia, MG, and rare disease communities.
How Do I Have Fun?
I’ll save my energy to play the piano, paint, or do something creative. Sometimes my husband and I will go for walks outside, and I’ll use my power chair. And like everyone else, I enjoy spending time with friends and family.
When I have to do something overwhelming — I have a lot of medical appointments, tests, and infusions — I plan a reward for myself after. It’s a lot easier to get through the hard parts of my illness when I have something to look forward to.
My reward can be something small, like watching a movie, buying a new album from a favorite artist, or eating something I enjoy. I’m a chocolate lover. But when I have to travel for appointments, my husband and I will plan what take-out food we’ll get. That makes it feel a little more fun.
What Treatments Help My MG Symptoms?
I take meds throughout the day, including an immunosuppressant. I also get IVIg infusions every week, a treatment that affects my antibodies in a way that helps my immune system.
Every day I use a BiPap (bilevel positive airway pressure) machine to help me breathe.
I also had a thymectomy in early September. That’s a surgery to remove the thymus gland. This procedure may help ease symptoms for some people with MG. It’s not right for everyone, but my doctor and I decided it’s my best chance for long-term improvement.
When I’m not recovering from surgery, I try to stay active and build up my strength. Right now, I’m working on walking longer distances. I do short walks inside my house or outdoors nearly every day. I also stretch regularly, which helps manage some of my chronic pain from injuries.
What Are My Other Strategies to Manage MG?
I follow a pretty strict routine each day. I try to eat my meals at the same time. That helps me stay on track with my treatment schedule — it’s essential to take my medication and infusion at the right time.
If I have to make a call, I’ll schedule it in the morning and plan to rest afterward. But I have to be careful about how much I speak. Talking, especially on the phone, can make my weakness worse very fast. Respiratory problems are a big issue for me.
Sometimes I can’t fully recover if I push myself too hard. So it’s second nature for me to take breaks throughout the day. But it’s not possible to avoid my triggers all the time. That includes stress and overexertion.
I’ll go into survival mode when I feel like I’m on the verge of a serious flare. I do what I call “militant” resting — I seriously limit how much I speak and move. I’ll stay on my BiPap. I may have to get my IVIg infusion earlier than usual to avoid a hospitalization.
How Do I Get Support?
My husband is my caregiver and has been for the last 6 years. He helps me with lots of things. I haven’t been able to drive in many years, so I often rely on him to go places. And he does all the cooking and a vast majority of the cleaning.
But he has a full-time job, and I know he gets tired. We try to make sure he gets breaks, too.
I’m also grateful for my family and friends who offer their support.
I’d never heard of MG when I was diagnosed. And I’m guessing most other people haven’t either. It brings me joy when someone tells me they’ve researched my condition or treatment. I know it means they’ll have a better understanding of what my life is really like.
You have MG. Now What?
A rare disease diagnosis can be the beginning of a new life. It’s OK to grieve what you’ve lost. But prepare yourself for the changes ahead. How will you accomplish everyday tasks? How will you manage your schedule?
It’s important to pace yourself. Plan for appointments and treatments. Schedule some recovery time after each task.
You may have to reframe how you think about rest. You aren’t being lazy. Breaks aren’t wasted time. Your body and mind need them, especially if you want to avoid flares.
Chronic illness can feel like a marathon. There may not be a finish line, and you may not be able to make it through the way you did before. But give yourself time and space to adapt to your new body and life.
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Facing Unpredictable Days
By Marcia Lorimer, as told to Hallie Levine
I’ve lived with myasthenia gravis for 65 years. I was diagnosed when I was 10. Up until then, I was a very active child who went from playing every sport imaginable to suddenly feeling constantly exhausted. I began to choke on food, slurred my speech, and developed droopy eyes. This was back in the 1950s, so after my family doctor couldn’t find anything wrong, he suggested that I might be seeking attention. At first my parents just thought I could be trying to mimic Marilyn Monroe. It took several months — and one hospitalization — before I got the correct diagnosis.
Back then, there wasn’t much known about MG, and there were very few treatment options. But over 6 decades later, there have been major advances in research and treatment. It’s true that day-to-day management of MG can be unpredictable and sometimes challenging. Yet it hasn’t stopped me from pursuing a fulfilling career as a pediatric nurse practitioner and university professor, as well as raising a family. Here’s advice I give to other people living with MG, to help them live a full life:
Stay up to date on vaccines. For me, one of the biggest triggers of an MG flare is a respiratory infection. COVID-19 is such a looming villain out there for folks with MG, but even a respiratory infection like a bad cold or pneumonia can be a serious threat. I personally have been hospitalized in the past after a bout with the flu. Some shots to make sure you’re up to date on the COVID-19 vaccine (including your booster, if you’re eligible), influenza, pneumococcal, and Tdap (it protects you against pertussis, or whooping cough). Your family doctor will advise you on other vaccines as well.
Get the best medical care you can. They call MG the snowflake disease for a reason: it’s different in each individual, and no two people respond the same way to a treatment. I can’t stress enough how important it is to have a doctor who really understands MG. You can’t just rely on your regular family doctor. My late husband, Bill, was an internal family medicine physician, and he’d get patients with MG who wanted to see him because they knew I had the same disease. But that’s very different from going to a neuromuscular specialist who sees patients with MG every day.
I’ll give you a personal example: about 30 years ago, I had an unexpected terrible flare, and neither I nor my doctor, Donald Sanders at Duke University Medical Center, could quite understand why. Dr. Sanders reviewed my situation with other MG experts, did some research, and decided that even though I’d had my thymus removed as a child to treat my MG, some residual thymus may have remained or grown back to trigger symptoms. I had a second surgical procedure to remove it and got much better.
I might not have gotten the right treatment if I hadn’t had a doctor as knowledgeable about the disease and as committed as Dr. Sanders to getting me the best care. The Myasthenia Gravis Foundation of America (MGFA) has a physician referral list of MG experts so you can find a doctor in your area.
Have a strong support system. This is particularly important during times of big emotional upheaval, such as death or divorce. I had one particularly bad flare, for example, when both my father and sister-in-law died around the same time. What always made these stressful times easier was to have a wonderful husband who was constantly there for me. It’s so difficult to parent as a person with MG because sometimes you can’t participate or go to things that are important, like school functions or sports games, because you’re so exhausted. That’s why having someone who’s willing to step in and fill in for you is crucial.
Attending a support group is a great way to meet others with myasthenia gravis and learn about their experiences. The support groups are run by volunteers who are typically MG patients or family members of patients. MGFA also has patient education materials such as webinars and patient meetings that provide important information about MG, research findings, and various treatment options.
Be open to trying new treatments. Thankfully, with all the medical advances with treating MG, many people should be able to function day to day fairly well. It’s normal to have an occasional off day, but if you frequently feel like you need to crawl back into bed, that’s a sign that your medications need to be adjusted. No treatment works 100%, but you should be able to find something that works every day, all day.
Trust me, I know what it feels like to struggle: When I was first diagnosed, I was so weak I could only eat pureed food and couldn’t even speak. Thankfully, over the years, I’ve found treatments that work.
Try to think positively. It’s important to not give into the gloom and doom and instead look at what’s bright in your life. People who sit around and think clouds form around them to make it rainy every day usually won’t fare as well as others who try to find happiness around them. This will help you cope when the unexpected happens. The day I got married, for example, I woke up with double vision, a symptom I hadn’t had in years. It most likely was brought on from the excitement that surrounded my wedding. It would have been easy to become depressed, but I simply decided to make the best of it and closed my eyes before every photo, to conserve muscle strength. It worked. My eyes may have looked droopy in some of the photos, but I also looked happy, and that’s what matters.
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What Everyday Life Is Like With MG
By Alexandria Edwards, as told to Keri Wiginton
I have severe, refractory MG. I’m 25 now. But my symptoms started when I was 15. I was at school, and my speech started to slur. My legs collapsed. I felt really weak. They thought maybe I had a stroke. One doctor guessed it might be migraines.
I actually had myasthenia gravis. But I didn’t learn about my condition, or get the right treatment, until several years later.
How Was I Diagnosed With Myasthenia Gravis (MG)?
My MG symptoms came and went all through my late teens and early 20s. I dealt with episodes of slurred speech, droopy eyes, double vision, and muscle weakness. I would drop things randomly or fall down. I thought I was just clumsy.
Things got a lot worse when I was 22. I started to have trouble chewing, swallowing, and breathing. One time my voice completely disappeared. I went to the emergency room, but no one knew what was going on. They told me to follow up with my regular doctor.
My primary care physician (PCP) suspected MG, but my antibody tests came up negative at the time. I left without clear answers.
A month later, I ended up back in the hospital.
It was the day after Thanksgiving. I went to the bathroom and got stuck on the toilet. My legs wouldn’t work. I struggled to breathe. My head dropped, and the slurred speech came back. I had full body weakness.
My family rushed me to the ER. We learned I was in a myasthenia gravis exacerbation. I started taking a low dose of a drug that helps nerves communicate with muscles. They also put me on a steroid that suppresses my immune system.
I thought everything would be fine after that. But no one explained how I needed to change my daily life to live with MG. Over the next year, there were more trips to the ER. I even went into respiratory failure and had my first MG crisis.
But eventually, I found good neuromuscular specialists who’ve helped me form a long-term plan.
What Do My Mornings Look Like?
I wake up at 8 a.m. and take my first dose of medication. I can’t get out of bed and function without it. I lay in bed for about an hour while I wait for it to kick in. Then I’ll get up and make myself coffee and breakfast. I love french fries and eggs Benedict with a side of hash browns.
I’ll take the rest of my pills when I eat. They include another drug that suppresses my immune system.
After breakfast, I’ll get dressed. That can be tiring. I’ll need to rest after. When I feel up to it, I’ll watch my 5-month-old niece so my mom can make her breakfast. My niece weighs 15 pounds, so I can’t hold her for very long. But I play with her the best I can.
I like to take a walk outside sometime in the morning, maybe to the mailbox. But only if it’s cool enough. My symptoms flare in the heat.
Then I’ll take some time to go on Facebook and check MG community groups. I like to offer helpful advice when I can. For example, people may have problems getting diagnosed or trouble with their IVIg treatment. That’s an infusion I get through a vein in my arm. It affects how my antibodies work.
What Is My Afternoon Schedule?
I take my medication every 3 1/2 hours, which means it’s time for the second dose around 11:30 a.m. Then I eat lunch. I’ll make it myself if I’m not too tired. If I’m not up for it, my mom will help. My energy depends on where I’m at in my IVIg cycle.
On a good day, I can eat pretty much whatever I want. But that doesn’t include really crunchy things. And big burgers or tough steaks aren’t a part of my meal plan.
But sometimes I can’t swallow very well. On those days I’ll make soup or something soft. Or I’ll cut everything up into really small pieces.
If I can’t swallow at all — that happens about once a day — I’ll get all of my nutrition and meds through a feeding tube. I had one surgically put in through my stomach. I need it because even with treatment, the swallow issue has never fully resolved.
I might go shopping in the afternoon. If I do, I’ll bring my walker. I can walk short distances without a break, like to the mailbox, but I can’t stroll around a grocery store for a long time without some help.
And if I have to go to something like an all-day graduation ceremony, I’ll take my wheelchair.
Where Do I Spend My Time?
I’m at home a lot, but there’s plenty for me to do. I’m very close with my family. We do a lot of different things together. We watch TV, play board games, or play video games.
Plus, I help care for my niece; babies take up a lot of time.
My days aren’t spent at a job. But I did go to cosmetology school before my symptoms got really bad. I’m big into skin care and self-care. I like to experiment with hair and face treatments. I do that for my mom, too. That’s my love language and one way I show her appreciation.
What Tips and Tools Are Helpful for Living With MG?
I modify a lot of my daily tasks. But I’m good at adapting.
Take cooking, for example. It’s fun, and I use it as a creative outlet. But it helps to make meals in stages. I’ll do the prep and put everything in the fridge. The actual cooking comes later, and I’ll lean on my walker or rest in a chair by the stove.
Then there’s bathing. I think most people jump in the shower and think nothing of it. But it’s not that simple for me. It takes a lot of energy to get clean.
But I find showers really relaxing, especially if I’m feeling stressed or down. My shower chair has made all the difference. Before, I had to sit in the tub and ask for help when I needed to get out.
If you have MG, don’t be afraid to get tools that’ll help you get through your day.
These things aren’t a sign you’re giving up. You’re just taking control of your life to make things a little easier.
Every Day Is Different
I have a flare-up quite often. While every part of my treatment plays a role in keeping me well, medication hasn’t cured my disease.
I may always need to bookend activities with breaks. But it’s a good day whenever I can move around and get things done. On a bad day, I’m completely bedbound. Serious flares like that usually don’t get better until I get my infusions. I’m very lucky to get those at home about every 2 weeks.
MG is a serious illness. But don’t assume we can’t take part in fun things. Invite us out. We may feel well enough to go. I know I appreciate the choice of whether to say yes or no. Sometimes I may surprise you.
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How I Handle the Fatigue
By Kelly Aiken, as told to Kara Mayer Robinson
In 2012, after a few years of breathing issues, fatigue, and frequent illness, I found out I have myasthenia gravis. Now, 10 years later, fatigue is still a problem. But I’ve found ways to manage it.
Daily Ups and Downs
My fatigue gets worse as the day goes on. I tend to do best in the morning. By late afternoon, I’m wearing down.
I’m usually in bed around 6 pm. I need around 14 hours of horizontal rest, or lying in bed. If I don’t get it, it’ll catch up with me and I’ll be tired much longer.
I struggle with sleep, though. I have a hard time falling sleep and staying asleep. When it’s particularly difficult, my fatigue gets worse.
I’ve also noticed other things that trigger my fatigue, like heat, stress, illness, and bug bites. Certain foods also make it worse, like sweets and greasy foods. I do better when I eat fairly healthy.
Sometimes the fatigue comes out of nowhere. I can be feeling pretty good and then all of a sudden, I’m done.
Treatment Ups and Downs
My fatigue roller coasters a lot based on my treatment.
Every month, I receive a 5-day series of intravenous immunoglobulin (IVIg). When I’m due for treatment, I do a fabulous impression of a rag doll. I’m floppy and my body just doesn’t work as it should. Even my brain function slows down.
Before trying IVIG, I did plasmapheresis, a therapeutic plasma exchange, every week. My brain slowed down a lot and I just couldn’t think well. After 5 years, I decided to try IVIg. It made a big difference. My whole body worked better and my personality came back. Now my weakness and fatigue are better than they were before.
Strategies I Use to Manage Fatigue
I’ve figured out a few strategies and adaptations to manage fatigue and function better.
I have a gadget that breaks the seal on jars so I can open new ones easily. Automatic can openers are helpful. I even figured out that if I attach a belt to my laundry basket, I can drag it around, which makes laundry easier and works nicely when I’m doing yardwork and need to clean up weeds or sticks.
I’ve learned that if I struggle with a task, there’s often a simpler, less strenuous way to get it done. It just requires a little creativity.
For other tasks that are simply beyond my abilities, I have a few people who are always just a phone call away. While I absolutely hate asking for help, I couldn’t be more grateful for these people in my life. I’ve also learned a lot from my local MG support group.
On the days leading up to my treatment, I plan ahead. I try to make sure I have everything I may need, so I don’t have to ask for help later. I try to do everything that needs to be done, so I can rest during my series and feel as good as possible after it.
I’ve found that sometimes Tylenol can help manage the severity of fatigue. It seems to delay the onset of pain, which sometimes delays the fatigue. If I have a long day or two planned, I’ll wake up and take Tylenol first thing to help slow the fatigue and then I’ll take it throughout the day to help me last.
Some people do meditation or yoga. For exercise, I walk when my body is up for it. My happy place is the water. I love swimming laps. On my good days in the water, you’d never know I had a muscle disease. The water supports my body and my spine can stretch out. It’s one of the most amazing feelings.
Finding a Balance
I’ve found that resting when my body says to rest is the key to staying somewhat functional. If I ignore that feeling, my symptoms get worse.
Years ago, I often pushed myself until my body would stop me. Fatigue is a showstopper. There’s only so much pushing back you can do without your body giving out.
When I listen to my body, I do OK. I’m much better at listening than I used to be, but I still have to re-learn my limits once or twice a year.
Learning to Live With It
The hardest thing about the weakness and fatigue is what I’ve had to give up.
Before my myasthenia gravis journey, I worked as a teacher in a day care for children and adults with developmental disabilities. I loved working. I loved finding the right motivation to encourage children to modify their behavior and being a source of support for adults with disabilities.
I had to stop working when very quickly a whammy of symptoms hit. I’ve come around to acceptance now. I’m well aware of how hard things can get, and I’m grateful I don’t get quite that bad anymore. I’ve learned to take my bad days with a grain of salt and just ride the roller coaster until things get better again, because things will get better.
I’ve learned nothing is permanent. Everything is temporary. Feeling good is temporary, as well as feeling bad. You just have to hold tightly to that grab bar and hang on.
Feeling good is temporary, as well as feeling bad. You just have to hold tightly to that grab bar and hang on.