One morning in November 2009, I woke up dizzy – a cloudy feeling I couldn't explain. I ignored it and continued my routine, seeing patients at a clinic in central Austin, carting my daughters to preschool. But when I developed double vision and taste changes, I started to worry...
(To read the full story, please go to Public Health Watch or The Dallas Morning News.)
I can hardly believe a new year is upon us! As we celebrate the start of 2023, I hope you'll join me in making a New Year's resolution to prioritize personal health. For those of us with MS, I think one chronic condition is more than enough. Let's do everything we can this year to stay healthy! Are you seeing your healthcare provider regularly? Getting enough sleep? Eating a healthy diet? Exercising most days of the week?
The beginning of the year is a time to reflect on our lives and make changes, big and small, to improve. Here are some suggestions:
1) Get a check-up with your primary care provider. Your PCP can talk to you about any health issues, bothersome symptoms, depression or mood concerns, and help you catch up on screening tests for chronic disease and cancer.
2) Make sure you've had all recommended immunizations. In addition to COVID and flu vaccines, everyone needs an updated tetanus shot every 10 years. Depending on your age and risk factors, you might also qualify for a shingles vaccine, pneumococcal vaccine, and/or other immunizations.
3) Make a plan to exercise. Adults should get at least 150 minutes of moderate-intensity physical activity each week + 2 days of muscle strengthening activity. Find an exercise buddy, make a workout mix of favorite songs, or find another way to make it fun. Pick a time that makes sense for your schedule and make a commitment to yourself to stick with the plan.
You might also consider resolutions to better manage stress, sleep 7-8 hours a night, eat more fruits and vegetables, start a meditation practice, write in a journal. Write down your resolutions as "SMART" goals: something that is Specific, Measurable, Achievable, Relevant, and Time-bound. I also encourage you to share your resolution with a friend or family member who can provide encouragement and help hold you accountable.
Here's to a happy, healthy new year!
Everyone is getting sick. Our hospitals (and hospital doctors like my husband, Don) are overwhelmed. What can you do to stay healthy?
Nothing is 100% protective, but I wanted to share these 6 self-care strategies to help keep you well during this busy time of year:
1) Get enough sleep: For most adults, 7-8 hours a day are recommended. Follow sleep hygiene recommendations:
2) Stay Active: Getting at least 20-30 minutes of exercise a day will help you feel and sleep better, in addition to physical health benefits.
3) Don't drink too much: Alcohol is often a central part of holiday parties, but it can lead to accidents, impair judgement, and interfere with sleep. The effects of alcohol impact short and long-term health. In general, women should limit alcohol to one drink/day (or less), and men can have up to two.
4) Follow a healthy diet: It's tempting to overeat when you're surrounded by seasonal treats. Aim for 5+ servings of fruits and veggies a day and limit snacks, desserts, and sugar-sweetened beverages. Harvard Health has more on avoiding holiday weight gain.
5) Stay up to date with COVID and flu vaccines: Flu cases are rising in many areas, and COVID cases are starting to climb in many places too. Vaccines significantly reduce the risk of severe illness, hospitalization and death from COVID and flu. Keep a close eye on disease activity in your community, and consider wearing masks and avoiding crowds, especially if case rates creep up.
6) Breathe: The holidays are fun… but can be stressful. Take time to pause, take deep breaths, meditate.
Make sure self-care is one of your top priorities!
Please add your thoughts and your own tips below! Also, check out my monthly columns with Public Health Watch (and sign up for their thoughtful and informative newsletter).
"These lesions here and here pretty much confirm the diagnosis of MS," the neuroradiologist said, pointing to fuzzy white spots on my MRI.
I stood there in the dark room, staring at the MRI films. I didn't know how to read an MRI, but I could see the spots he was talking about. I couldn't believe it. Maybe these weren't my MRI films. Maybe the machine was broken. He had to be wrong. He had made a mistake.
Continue reading on the National MS Society's Momentum Blog.
When have you found silver linings in your own life? Please share your experiences in the comments below.
Don't wear a mask… actually, wear a mask. Spray your groceries with bleach… no, that's silly and unnecessary. Boosters are for everyone… no, boosters are only for older adults and those with chronic condition. No, we were right the first time—boosters are for everyone (age 16+).
I already struggle with dizziness related to MS. But keeping up with the ever-changing COVID-19 guidance really makes my head spin...
Continue reading this article on the National MS Society's Momentum Blog and please share your comments below.
Summer is not my favorite season: HEAT (especially in Texas). Over-air-conditioning in any indoor public space. No school = no structure and bored kids. Friends, doctors, and colleagues (including that person who really needs to weigh in on a big decision) are out of town.
But summer doesn't have to be the worst time of the year.
Perhaps, maybe, it can even be the best.
Although Covid-19 is still out there, the vaccine is safe for nearly everyone--even if you have MS or another chronic condition, even if you're pregnant or breastfeeding. Once fully immunized, you can enjoy a return to many of the pre-Covid pleasures of life. Some limitations remain, especially for those of us on immunosuppressant medications that might make us more susceptible to infection. But as case rates continue to decline, we can all feel safer to venture out, reunite with loved ones, and lead a normal life.
Here are some ideas to plan and experience your best summer yet:
1) Make a To-Do list of fun activities: My personal To-Do list usually consists of items like Change the oil, Water the plants, Pick up meds, Clean the rabbit cage, De-shed the rabbit, Vacuum the rabbit fur from my office, and Consider a less messy pet. But why not make a different list of fun stuff? You might make a shared list with family or friends, and then prioritize each item and get them on your calendar. My new list might include: Swim at Barton Springs, Go to an outdoor evening concert, and Go tubing in the San Marcos River.
2) Stay cool: Heat is a major inconvenience in many parts of the country, and it can even pose a health risk. For those of us with MS, heat can trigger symptoms and add to fatigue. To cope, stay well hydrated with ice water/cold drinks. Go outside in the early morning and evening, and stay inside during the middle of the day. Dress appropriately, and use fans to cut down on high AC bills.
3) Get out of town: Just the act of planning a vacation can improve quality of life for up to eight weeks. Declining rates of Covid-19 mean that most travel, with reasonable precautions, is safe again for people who are vaccinated. Try to find a spot near water – pool, lake, ocean – or a place that allows you to escape to a cooler climate. If your budget is tight, look for a nearby state or national park where you can camp for a weekend, or visit friends or family who can host you. See my prior blog post on lessons learned from air travel.
4) Indulge in seasonal produce: This is the best time of year to enjoy cherries, peaches, tomatoes, cucumbers, blackberries, and so much more. Visit a new farmers market, make smoothies, and try new recipes (like this excellent gazpacho recipe.)
5) Enjoy live music and entertainment: With rates of Covid-19 falling fast, live entertainment is coming back. Search on-line for local options, like a free symphony concert or Shakespeare in the Park.
6) Set a goal and start to work on it: Always having a goal is a key strategy for coping with a chronic condition and for anyone who wants to feel a sense of purpose and accomplishment. Think of a new skill you'd like to learn or a house or professional project to tackle. Set a new fitness or health goal (maybe join a Walk MS or MS150 event this fall). Choose something attainable, map out the steps to get there, and go for it!
7) Read some great books: Escaping into a good book is the next best thing to embarking on your own adventure. Visit a local bookstore for inspiration. Follow friends (and me!) on Goodreads. Get a free trial on Audible. For more ideas, the New York Times publishes a fun list of summer reads. Share what you're reading in the comments below.
And while you're having fun, take good care of your health:
What other ideas do you have for a great summer? Please add them to the comments below.
Get up now and exercise! Lying in bed is lazy. And what's up with this messy house? Shameful. You need to clean this weekend. Speaking of messes and inefficiency, can't you get your email under control? Your inbox is going to explode. You better deal with those emails while you're working out on the Stairmaster... or read some medical journals. You do realize you aren't doing enough to keep up with the medical literature, right?
On and on she goes.
Believe it or not, she has chilled out over the years. Having MS has helped me to suppress the drill sergeant and sometimes have a little self-compassion. But I'm still a work-in-progress.
I reviewed a section of my upcoming memoir with my editor recently. I had written about how my return to work after my MS diagnosis 11 years ago helped me stop my "self-absorbed wallowing."
"What? 'Self-absorbed wallowing?' You're being way too hard on yourself," my editor said. "You had just been diagnosed with MS… You wouldn't treat a patient that way – or a friend."
Of course not. I hadn't even realized I was being harsh. But she was right. After my MS diagnosis, I should have allowed myself to feel disappointment, despair, even to "wallow" without this hypercritical inner judge telling me to hurry up and get over it.
I'm not going to psychoanalyze myself to get at the root cause of my commandant mentality. My drive to work hard has helped me achieve important goals and feel a sense of purpose. But I am learning to gently push back against regular self-criticism. MS is an extra good reason to cut myself some slack. I can befriend and cheer myself on with a more congenial tone:
- I can only do what I can do.
- I'm doing the best I can.
- I'm doing enough, I have enough, I am enough.
Self-compassion does not need to mean self-indulgence. Even when I want to, I don't skip my workouts or binge on Ben and Jerry's. But it's a new mindset, and it's helped me create small rituals that brighten my day: I light a candle at my desk. I take short walks around the block or to the community garden between conference calls. On Wednesdays after my run, I go to Caffe Medici for a chai latte, and I pick up tacos for my kids. On afternoons packed with meetings, I treat myself to dark chocolate. With rare exceptions, I don't work on weekends. On infusion days, I pack snacks, listen to good music, and wear fuzzy socks.
I still spend too much time in my home office, on Zoom/Skype/Teams calls, reviewing reports and spreadsheets, or plowing through email. I feel guilty that I'm not working hard enough and then guilty that I'm not spending enough time with my family. But like everyone, I'm stuck with a 24-hour day. It is OK. I'm doing enough, I have enough, I am enough.
Please share your thoughts on self-compassion in the Comments below and any recommendations you have for me and others.
I am high maintenance when it comes to sleep. Conditions have to be perfect: dark, quiet, not too hot, not too cold. If I stay up too late, I may miss my bedtime window and not be able to sleep. If I go to bed too early, I may be awake for hours. Interruptions provoke an unfiltered rage because I know I may not be able to get back to sleep, meaning I'll be tired in the morning, grumpy and volatile all day, and unproductive at work. Sleep is key to my wellbeing and relationships, but getting a good night sleep can be a major challenge.
Studies show I'm not alone. Insomnia affects nearly 1/3 of adults, and stress (think Covid-19) and chronic disease can make it worse.
Poor sleep can also contribute to health problems, increasing the risk for weight gain, diabetes, and possibly mood disorders, reduced immune function, heart problems and even decreased life expectancy. Adequate, restful sleep is important.
So, what's an insomniac to do? Here's the lowdown on treatment options and sleep meds:
Before turning to medication, make sure you practice good sleep hygiene:
Try meditation. Try breathing or relaxation exercises. This guided meditation was recommended by a physician friend.
Talk to your doctor if you take medications that can impact sleep (stimulants, some antidepressants, some blood pressure medications, steroids, and others).
Know that most sleep meds only increase sleep by 15-30 minutes.
Weigh risks and costs of medications:
Consider supplements (but have realistic expectations)
I also wear ear plugs and use a white noise app – both help a lot.
Finally, emerging evidence shows diet and sleep are intimately connected. Studies show sugar, saturated fat, and processed carbs can interfere with sleep. Plants, fiber, unsaturated fat may improve sleep.
Here's to sleeping better in 2021! Hopefully we won't have as much to keep us up worrying. Please add your own suggestions in the Comments section below.
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I woke up dizzy on a Monday morning in November, 11 years ago. I didn't think much of it, and I went to work, as usual, at my small community clinic in Central Austin. But as the week wore on and my symptoms persisted, without any explanation, I began to worry. When I started to have mild diplopia and taste changes, I needed to seek care. A neurologist examined me and told me I was probably okay, but my dizziness continued. A few days later, after noting subtle nystagmus during my otherwise normal exam, a savvy ENT doctor ordered the MRI, revealing my diagnosis: multiple sclerosis...
Continue reading on the Texas Academy of Family Physicians blog: https://www.tafp.org/blog/ms-resources
It's one of the most dreaded outings for my family each year: the trip to our local pharmacy for flu shots.
"Why??? I don't want to get a flu shot!"
My kids are old enough to know why, yet they still complain and fuss. Nevertheless, we go, and I know, with absolute certainty, we are making the right choice.
This year, more than ever, the flu shot is important. Flu shots are recommended for most people with MS and for nearly everyone else. (Many of us with MS or certain other conditions should get the inactivated flu shot, not the nasal spray). I urge you - even if you don't usually get the flu shot, you don't think you need it, you "never get sick," you think it's not worth the trouble, you think it will make you sick – to please get a flu shot this time.
I recently had an opportunity to answer questions from a reporter about the flu shot, and I am sharing my answers below to help you better understand the current concerns around flu and the coronavirus pandemic and to clear up some misconceptions.
I will get some hate mail for this, but I will take the heat. Flu shots continue to be one of our most important tools to improve public health. A flu shot could save your life.
How can people navigate the flu season while we are in the midst of a pandemic?
I don't think we have a precedent for anything like what we could face if we have a bad flu season while COVID-19 continues to pose a real and significant threat. Hospitals in many parts of the U.S. already have been strained and sometimes overwhelmed in the last few months by COVID-19. To layer a bad flu season on top of the pandemic, which many experts expect could worsen this winter, would be catastrophic in some communities.
We do think for individuals who become sick with influenza, the coronavirus poses a greater risk. Influenza is likely to make them more vulnerable and susceptible to complications from a coexisting infection with COVID-19.
To reduce these risks, we all have to double down on the measures we know will lower the risk of spreading both COVID-19 and the flu. Fortunately, social distancing, face masks, and hand hygiene will help with both. Getting a flu shot is another very important way to stay healthy and lower the burden on our hospitals this winter.
One small silver lining to the pandemic is that if we follow recommendations to reduce the spread of COVID-19 in our communities, we will also reduce influenza. Some countries in the southern hemisphere, like Australia, where it is late winter, are enjoying a much better flu season than usual, largely due to the restrictions on social interactions and other measures in place to combat COVID-19.
Why is it so crucial to get the flu shot as it pertains to coronavirus?
The flu shot will not prevent COVID-19, and it is, in a good year, only about 60% effective at preventing flu. But it is one relatively easy, inexpensive way we can stop influenza from becoming more widespread, causing more people to get sick and fill up our hospitals. We know the flu vaccine reduces lost work/school days, hospitalizations, and deaths. This year, more than ever, while we wait for a vaccine against COVID-19, we need to do all we can to keep from overburdening our healthcare system.
What month is ideal to get the flu shot and why?
September and October are usually the best months to get the flu shot. Ideally, one should be vaccinated before flu season (which usually peaks between December and February). Getting vaccinated before September may lead to reduced immunity later in the season, especially among older adults. But even if immunization occurs earlier or later than the recommended time frame, it can still be beneficial and protective.
One exception to the preferred time is for children who need two doses of the vaccine. These are kids 6 months to 8 years old who have not previously received at least two doses of flu vaccine in the past (prior to the current flu season). Children who need two doses of the flu vaccine should receive the first dose of the vaccine as soon as it becomes available. The second dose is then given at least four weeks later to improve vaccine effectiveness.
What age groups should get the flu shot and why? What about those who worry about getting the flu from the shot?
Flu shots should be given to virtually everyone over 6 months old, every year. Although mild side effects can occur, flu shots do not, cannot, cause the flu. Only rarely are they contraindicated. Flu shots are safe, and they save lives and prevent hospitalizations.
If you get the flu right after getting the flu shot, the vaccine is not to blame. Keep in mind it usually takes about two weeks for your body to develop antibodies and be protected from the flu after receiving the shot. And if you are someone who never gets sick, count yourself lucky and get the shot anyway. Even if you think you don't need the shot, you should get vaccinated to reduce your risk of spreading flu to others, especially during the COVID-19 pandemic.
With very rare exceptions, EVERYONE should get the flu shot EVERY year. It's one of the most important things you can do for your own health and that of your loved ones.
How can people distinguish flu symptoms from COVID-19 symptoms?
LD: Distinguishing flu from COVID-19 is often not possible without viral testing. Both can cause fever, cough, body aches, fatigue, headaches, and other symptoms. Early in the pandemic, many test sites actually tested for both because influenza was still circulating, and the symptoms of each viral illness overlap too much to reliably differentiate the two. Right now, influenza is not circulating widely in the U.S., so if someone presents with classic "flu symptoms," COVID-19 is far more likely. Once flu season starts, though, we will need testing, in most cases, to know which virus we are dealing with.
Why do people need a flu vaccine every year?
Influenza, the virus that causes flu, changes quickly, allowing it to spread and survive. The vaccine each year has to be adjusted to keep up as the virus evolves. In addition, our immunity against flu decreases in the months after receiving the vaccine, so getting another flu shot each flu season is recommended. One of the unknowns about the much-anticipated coronavirus vaccine is how long immunity will last. We don't know yet how often we will have to be vaccinated to protect us against COVID-19.
What can parents do to protect children who are too young to get vaccinated?
Only infants under 6 months old are too young to get vaccinated. To protect these children, parents should make sure they themselves get vaccinated as well as everyone else in the household, any childcare providers, or anyone else who has regular contact with the infant.
Of course, regular hand washing is important for anyone in close contact with the infant. Breastfeeding, as well, may provide some protection and offers many other health benefits.
Do you still have questions? CDC is a great resource for information on flu shot and other vaccines.
Please share your comments below. I'd love to hear from you!
I can only do what I can do.
These words are my new mantra. As my workload doubled over the last six weeks with big changes in my company, and my husband left town to care for a sick family member, I have lived in a constant state of overwhelm.
When I'm not glued to my laptop on a Zoom call (or Skype, or GlobalMeet, or Teams), I am emptying and filling the dishwasher, trying to make sense of lengthy emails about ever-changing school reopening plans, and pleading with our anxious dog to please, PLEASE stop barking. Oh yeah – I'm also checking on my kids, trying to limit screen time and brainstorm other indoor activities since it is 106 degrees outside, and the pools are closed.
I wake up nearly every day, take one look at my calendar and email inbox, and say (often out loud), "I cannot do all this! It's too much!" And it is. I am right: I can't do it all.
For a long time, I blamed myself when I couldn't accomplish everything expected at work while also taking care of my kids while also fitting in time for MS-related self-care while also sleeping sometimes while also emptying the dishwasher again. I tried to figure out what I could give up from my overpacked schedule: Walking the dog? Before-bed reading? Thirty minutes of sleep?
I mastered multitasking: half-hour on the Stairmaster while reading work emails, cleaning the kitchen or laundry during select conference calls.
But I've learned even with thoughtful strategizing and corner-cutting, I still can't catch up at work. I still couldn't make the scone recipe I wanted or mow the yard or change the sheets this weekend.
Hence my reminder – a form of self-care, really: I can only do what I can do. Somehow this simple, obvious truism gives me comfort.
Because I am not superhuman, and my day is only 24 hours, I will be a little less conscientious. I will ignore some emails. I will take my dog to the garden in the morning and start work 15 minutes late. It will be enough; it has to be enough.
And in rare moments, I may even be grateful I have Too Much, to live a life that is stuffed with activities and projects and even interruptions.
Please share your comments below. I'd love to hear from you!
"You have MS."
I remember hearing those words, 10½ years ago, from a neuroradiologist in a dark room, huddled around my MRI films. The diagnosis explained my mysterious dizziness and double vision, but was unexpected, raising new questions and confusion. My husband, Don, thanked the radiologist, and guided me back to our car, both of us feeling terrified and overwhelmed. What would MS mean? Could I work? Would I ever feel better? Could I exercise, travel, drive?
Continue reading this article on the National MS Society's Momentum blog.
Please share your thoughts and suggestions in the comments below.
I'm embarrassed by my own ignorance sometimes. Sure, I'm a progressive advocate for social justice. I pride myself on treating all my patients with thoughtfulness and compassion, without judgement. But I have a confession: occasionally, I get it wrong.
(Continue reading on Doximity)
In the first few weeks after the coronavirus quarantine began, I would wake up and think, just for a second, that it had all been a bad dream. At first, the pandemic seemed as far-fetched as an apocalyptic movie: an asteroid hitting the earth, an alien invasion. I would try to stay in that Land of Denial as long as possible, knowing COVID-19 was real, but clinging to the feeling that maybe it wasn't.
I've experienced Denial before – at the time of my MS diagnosis in the fall of 2009. It seemed like a refuge, a welcome escape from reality. But eventually, I worked up the courage to face my vulnerability and new normal. Now, most of the time, MS is an afterthought.
Will COVID-19 become that way too? Indeed, we are getting used to new routines, to face masks, to virtual meetings. But I feel nostalgic for carefree grocery shopping and dinner with my extended family, and I'm disheartened by news that we aren't likely to return to our old way of life anytime soon. Odds are good most of us are going to continue spending a lot more time at home than we ever have before.
I am heartbroken for our world, the lost lives, the lost jobs, the cancelled events, plans, and dreams. But for those of us who are fortunate to be healthy and stuck at home, how do we make it bearable, even fun?
As I have with MS, I am discovering some surprising silver linings, connecting in new ways with my family, and looking for the lessons that come with any big change. Here are some quarantine-survival strategies that I hope may help you, too, make the best of this strange and challenging time:
1) Laugh: Escape from the gloomy news and play a game (we like Scattergories and Ticket to Ride). "Chalk Bomb" a friend or neighbor by drawing pictures and encouraing messages on their driveway. Or enjoy some of the hilarious Internet videos that creative folks have posted about our current situation. Here are three favorites:
- Saturday Night Live zoom call
- Family parody of Les Misérables, "One Day More"
2) Make a difference: Sewing masks has been a great outlet for many and a way to help us all stay safer. But there are many other ways to help from home. My kids created a virtual fundraiser for the Central Texas Food Bank and posted it on our neighborhood listserv. Austin's Generation Serve has recommended creative ways for kids to contribute. And Thrive Global shared a great list of other volunteer opportunities you can do from home.
3) Declutter and organize your space: If you're stuck home for weeks and months on end, make it beautiful and peaceful. Read Marie Kondo's The Life-Changing Magic of Tidying Up or watch her show on Netflix for inspiration. (Of course, there is nowhere to donate anything, but find a closet or corner to stash discarded items until the beautiful day when you can pass them along to Good Will or a new home).
4) Meditate: Mindfulness-based stress reduction (MBSR) meditation is life-changing for many people, teaching us to focus on the present moment and greet each moment with acceptance and care. It has proven health benefits and is an important tool to deal with stress and anxiety. It also can help with sleep, pain, and general well-being. Some online MBSR classes are available. I also like the free app, Insight Timer, for an incredible selection of guided meditations.
5) Start a journal: I've kept a daily journal since childhood, and it helps me process events, track any health issues that pop up, and feel a sense of closure and completeness at the end of the day. I think journal-writing is a great stress management tactic and an important way to gain personal insights. We are living through a remarkable time in history, so keeping an account of daily life during this pandemic is particularly meaningful.
6) Take care of your mental health: Connect with friends via phone, walks outside (separated by at least six feet), social media, or old-fashioned letter-writing. Find a good "escape" book to read. And have fun being at home! Here are some favorite homebound activities: design a photo album online (I like www.snapfish.com, but there are many options), make bread from scratch, do a jigsaw puzzle, start a garden (even if it's on a balcony or window sill), make a scrapbook or collage, or draw or paint (use a favorite vacation photo for inspiration). Also, don't drink too much alcohol (limit yourself to no more than one drink a day for women or two for men).
I hope my tips are helpful. Please share what are you doing to create joy and meaning in the comments below.
Because of COVID-19, many of us who take disease-modifying therapies for MS are stuck in a tricky situation. How cautious do we need to be? How high IS the risk? If we are due for another infusion or dose of medication, should we take it or wait a few weeks? How isolated do we need to be?
I just had my infusion (with ocrelizumab) two weeks ago, which suppressed my immune system in order to control my MS. These questions of risk are personal and real.
The sad reality is we don't have all the answers. But most MS specialists seem to concur that many MS medications like ocrelizumab – along with alemtuzumab, cladribine, rituximab, fingolimod, dimethyl fumarate, diroximel fumarate, teriflunomide and siponimod – probably increase the risk of viral acquisition and severe illness, if infected. Taking extra precautions seems prudent, especially for those who are also over 60 and/or have heart or lung conditions. Talk with your doctor regarding modifying your treatments, and discuss other strategies to lower your risk.
As an MS Warrior, I am used to uncertainty. I don't know when another MS flare will sneak up on me, rob me of some vital function, make just a brief visit or stick around for a prolonged stay.
I'm also used to weighing pros and cons, risks and benefits. As a family physician, I have guided many patients over the years in testing and treatment decisions, and often the course is not clear-cut. In the decade since my own diagnosis with MS, I have worked with my neurologist to choose medications and develop treatment plans. We usually agree, but not always.
Add COVID-19 to the mix, and I'm pushed in new, frustrating directions with my decision-making, particularly with social distancing.
Just today, here are some of the decisions I have had to make:
In my city of Austin, there are just a handful of known cases of COVID-19. But we expect the virus is much more prevalent, and we can't confirm it because we haven't been testing many people.
COVID-19 can be passed to others – usually through respiratory droplets – even by those without symptoms. Without widespread testing, we can't tell who is infected, so we have to assume almost anyone potentially could transmit the virus.
Hence the recommendation for "social distancing" – keeping more than six feet away from others (especially if they are coughing or sneezing) and avoiding large gatherings, crowded venues, public transportation and nonessential travel. Social distancing also means limiting our contacts to just a few people and hunkering down at home.
For those of us with MS, social distancing is essential to lower our risk, though it can be difficult and downright lonely. I am trying to focus on "safe" activities that allow me to interact with others and get some air, such a taking bike rides or walks outside and connecting via text or on the phone with loved ones. Some of my neighbors are banding together to help those at high risk by grocery shopping or picking up prescriptions. We are all scared, but we will get through this difficult and uncertain time.
Uncertainty can be infuriating, even paralyzing, but as I have with MS, I will try to let it be a teacher and guide. I may not know what this week will hold, but I can be present in this moment. I can't control this virus, but I can try to meet each bit of news, each decision, with patience and grace.
I will follow the guidelines. I'll keep up with the news. I'll make sure to get enough sleep, exercise, and double down on self-care. And I will also look for silver linings, practice gratitude, and take each day as it comes.
Uncertainty.
Take a deep breath. And another.
Those of us with MS or another chronic disease are used to living with uncertainty. We don't know when another MS flare will sneak up on us, rob us of some vital function, make just a brief visit or stick around for a prolonged stay. That's the way it is with this bizarre disease, and in the weeks, months, and years after a MS diagnosis, we learn to cope.
But COVID-19 is a double whammy. It is hitting hard on so many levels. First, of course, are the health concerns. While we know this new virus is bad, we don't know how bad, how long it will last, how far it will spread. We think it is worse for people with chronic diseases and/or suppressed immune systems, but we don't know how much additional risk we have, as people living with MS. (I had my Ocrevus infusion last week, potentially reducing my ability to fight infection. Bad idea? I don't know.)
We know COVID-19 is less contagious than influenza, but it is more deadly. How much more? Is the case fatality rate 2%? 4%? Much lower, because we aren't testing and counting those with mild or asymptomatic infection? Is it really 15% in people over 80, or even higher when factoring in preexisting conditions? How are survival rates impacted by having diabetes, heart disease, or multiple sclerosis? We have so much to learn.
A second concern is the economic and societal impact. The huge music and film festival, South by Southwest (SXSW), was just cancelled in my hometown of Austin, causing some business owners to panic and creating widespread disappointment among musicians and would-be attendees. Events all over the country are being cancelled or postponed. Schools are closing. Vacation plans are being scrapped.
I've been reading about COVID-19 incessantly this week, and my initial sense that the hype and paranoia were unwarranted has shifted. I'm not stockpiling food, I'm not wearing a mask (it won't protect us from infection), and I'm not overly concerned about my own health. But I'm worried this virus is not going away soon. Spread of the infection is likely; containment is improbable. The ability to test more people for COVID-19 is a mixed blessing: Identifying people who are sick allows to us to take action to minimize spread, but it will also lead to a surge in confirmed new cases. Even if the situation isn't worse, new testing capabilities may make it look worse.
How do we weigh the risks and benefits as we make decisions in the coming weeks?
My 12-year-old daughter, Clara, often asks questions like "Would you rather eat a cup of live cockroaches or spend the night in a cage with hungry lions?" In my case, the immediate choice is not quite as terrible: Would you rather give up a much-anticipated spring break trip to California or gamble in a game where the odds are unknown and the consequences could be quarantine, serious illness, or absolutely nothing?
Uncertainty can be infuriating, even paralyzing, but as I have with MS, I will try to let it be a teacher and guide. I may not know what this week will hold, but I can be present in this moment. I can't control this virus, but I can try to meet each bit of news, each decision, with patience and grace.
Wash your hands – don't touch your face – cover your cough – don't go out if you're sick. I will follow the guidelines. I'll keep up with the news and probably cancel that trip to California. But I will also look for silver linings, and practice gratitude, and take each day as it comes.
P.S. Don't spend all your time reading the news, but for regular, reliable information, here are my best references: https://www.cdc.gov/coronavirus/2019-ncov/index.html and https://www.nytimes.com/2020/03/08/world/coronavirus-news.html
Please share your thoughts in the Comments below.
Dizziness is the bane of my existence. It's my most persistent and irritating MS symptom. It's led to a long list of restricted activities: amusement park rides, drinking caffeine or alcohol, cartwheels, reading on a road trip, certain yoga positions.
Obviously, none of these activities are essential. But even with strict adherence to my self-imposed "dizziness avoidance rules," I still have those days when I can't escape that woozy, cloudy feeling that I call "dizziness" (because nothing else describes it quite as well).
How do I cope? It's not always easy.
In the early years after my MS diagnosis, I felt dizzy every minute of every day. Nothing seemed to make it better or worse. I tried everything: medications, physical therapy, dietary changes, more sleep, less sleep, more exercise, less exercise. I was powerless.
But gradually, my symptoms lessened. I have relapsing remitting MS, so some improvement wasn't surprising. I also started to discover some ways to manage my dizziness, or even reduce the chance that it would happen at all.
For others struggling with dizziness—or any other frustrating symptom, for that matter—here are some suggestions that may help you take your life back:
Track your symptoms: For a long time, I didn't really know if my dizziness was tied to sleep, mood, stress or anything else. So, I started to track my symptoms on a scale of 1-10 and the quality of my sleep, level of stress and mood/overall wellbeing. Then I looked for correlations over several weeks. I was surprised that I didn't find much connection, but it was reassuring. If I couldn't sleep one night, I could remind myself that my insomnia didn't necessarily mean I would be dizzy the next day. If you have suspicions that certain foods, situations or activities are triggering (or improving) your symptoms, test out your theory and use that information to make some positive changes.
Rule out other causes: Dizziness is not a rare symptom of MS, but it is not the most common either. I have done hearing and visual tests, bloodwork, and have tried allergy medications to rule out other causes. I am now confident that my dizziness is due to MS. Unless your symptoms are an obvious consequence or your disease process, make sure you and your physician have investigated alternate explanations.
Trial and error: Although I never want my quest for a cure to take over my life, I have tried a range of treatments to see what might work. For me, acupuncture and restorative yoga provide brief relief. Visual therapy seemed to reduce my overall number of dizzy days. Although I sometimes cheat, avoiding caffeine helps. While I've opted for a mostly vegan diet for other reasons, I know that diet does not play much of a role in my dizziness. Trial and error helped me create the "avoidance rules" listed above, and it also allowed me to identify activities that are unlikely to cause dizziness.
Meditate: Nothing has helped me more than meditation to both reduce my dizziness and cope when I have it. I took a mindfulness-based stress reduction (MBSR) meditation class several years ago. I had hoped it might help with stress, but I had no expectation that it would give me a powerful tool to combat my most irritating MS symptom. By meditating for just a few minutes every morning and night, I reduce my odds of feeling dizzy. When I get dizzy, a 20-minute meditation session can sometimes stop my symptoms. Even when I have bad dizziness that won't go away, meditation helps. "This is the way it is right now," I remind myself. I acknowledge it, without judgement, and go on with my day.
Practice self-care: Regardless of your symptoms, you can feel better overall by prioritizing self-care. Follow a healthy diet, maintain nurturing friendships, reduce stress, exercise (find a way to get moving that you don't hate) and get enough sleep. If you are struggling with anxiety or depression (which are so common with MS and other chronic conditions), find a therapist who can provide guidance and support. Sometimes by focusing on self-care, you'll find that your prior symptoms will dissipate.
Please offer other suggestions in the comments below and let me know if any of my recommendations are helpful!
MS had really taken a toll on my new patient. Or so I thought…
She came to see me one afternoon in my family medicine clinic. Her son pushed her into my exam room, and I moved my stool to make way for her wheelchair. One of her arms was rigid, useless. Her speech was slurred, and she reported terrible back pain. As an MS patient myself, I was disturbed to see her, knowing that my fate could be similar.
"How long have you had MS?" I asked.
"Oh, 20 years, at least," she said, pausing to clear her throat. "But I was doing OK until the stroke last year."
Stroke? What? It was a stroke that caused all these problems?
As I unraveled her story, I learned I was wrong about her MS. Before the stroke, she had been an active hiker and traveler. I don't think she had seen a doctor much either, except perhaps to treat her MS. And I don't think anyone had ever checked her cholesterol.
I was startled to see how high her cholesterol was, when I got her test results back a few days later. I immediately started her on medication. Now I had found a reason for her stroke... and a critical reminder to me, as an MS patient: Don't overlook preventive care!
Preventive care encompasses everything from screening for cancer, diabetes, and high cholesterol to getting immunizations, dietary guidance, and smoking cessation. It doesn't get the same attention, headlines, or research dollars as breakthrough medications for advanced cancer or complex new surgical techniques, but it is important.
Especially for those of us with MS, preventive care is often overshadowed by more urgent matters. MRIs
may be more critical than mammograms; seeing the neurologist may take precedence over seeing the family physician. I know when I was required recently to go in for a check-up with my primary care doctor, I complained, "I already see so many doctors! I don't want to go to another medical appointment!"
But preventive care should be a top priority for everyone with MS, adding quality and longevity to our lives. With preventive care, we can detect and remove colon polyps before they become cancer. We can identify osteoporosis (thinning of the bones) and treat it before a fracture occurs. We can and do prevent millions of infectious diseases every year through vaccinations. And perhaps my patient, had she been screened and treated for high cholesterol years before, could have prevented her stroke.
Those of us with MS may also be inclined to blame MS for every ailment, as I started to do when I assumed my patient's disability was due to MS. We shouldn't. For example, fatigue, though so common with MS, can also be due to a myriad of other conditions like anemia, underactive thyroid, depression or sleep apnea. Checking in regularly with a primary care doctor is an important way to ensure other symptoms and concerns are addressed.
If I'm stuck with MS, I'm going to make sure I do everything I can to prevent another chronic disease. That means getting up every morning to exercise, making sure I eat at least five servings of fruits and vegetables every day, and sleeping at least seven hours every night. That means seeing my primary care doctor for screening tests and reviewing new symptoms – that may or may not be due to MS.
Despite my best efforts to stay healthy, I still got MS at age 36. Illness can be random and mysterious, but I haven't let it stop me from seeking new challenges, prioritizing preventive care, and doing whatever I can to stay at healthy as possible.
As we gather with friends and family over the holidays, many of us are destined to end up in awkward conversations about our health. Especially if our diagnosis is new, or we have suffered a recent relapse, or transitioned to using a cane or wheelchair, there WILL be questions. We may be able to skirt around the subject, preferring a less-loaded topic, like, say, the impeachment inquiry. Or we may get stuck fielding questions about what it's like to have a serious chronic illness, what medicines we are or aren't taking, and how all of this is impacting our life.
For those of us with MS or another chronic disease, discussing our less-than-perfect health, our feelings about our diagnosis, and our plans for adapting to our changed condition can be painful. We often think about our limitations far more than we'd like, and we don't want extra reminders of our illness from others.
I've been at joyful events – holiday celebrations, special dinners, weddings – enjoying carefree time with friends and family, NOT thinking about MS, when someone will ask, with all the best intentions, "So how is your health?" It can be jarring and unwelcome, even though I may feel grateful for their concern. (In fact, if they didn't ask, I may wonder later, "Wow! They didn't even ask about my health!)
But for a partner, friend, or family member, our silence can be frustrating, leaving that would-be confidante and support person feeling unappreciated and disconnected. "I just want to help. How can I help when she won't talk about it?" the partner/friend/family member may wonder.
Both perspectives have validity. Those of us with a chronic disease may not realize that others who care about us suffer too because of our illness, especially when we are unwilling to talk about it. And yet sometimes those who care overstep and put pressure on us to overcommunicate.
So how can we bridge this divide? I've shared some ideas below.
If you are the person with MS/other health condition:
- Get in touch with your own feelings about your diagnosis. Through journaling, meditation, long walks, counseling, or some other means, sorting out your mishmash of emotions can provide clarity and guide how you want to communicate with others.
- While it may feel intrusive or overwhelming, recognize that usually people who are interested in your condition are concerned about your welfare. They want to help. Try to meet their inquiries with gratitude rather than irritability. And don't be afraid to accept help! You don't have to bear this burden alone.
- Communicate your preferences, at least a little. If you do not want to talk about your condition, now and maybe not ever, that is OK. But it may be hard for people who care about you to know how to handle the situation. At least try telling them "I know I have this condition, but I don't want to dwell on it. I'll let you know if something big happens with my health, but otherwise, I'd like to move on. I am grateful for your support, and I'd rather spend my time with you talking about other things."
- If you have a lot of different people asking for updates and wanting to help, realize, in fact, you're lucky! But if it feels like too much, designate one person who can be your spokesperson and provide appropriate updates on your behalf.
If you are the would-be support person, struggling to get your loved one to share her burden:
- Don't ask questions at the holiday dinner table. If you are concerned and feel the need to check in on your loved one, find a quiet, private place to do so.
- Strive to accept that person where she is in the process of coming to terms and living with her diagnosis. "I am here for you, and I'd like your guidance about what being here for you should look like." You might then make suggestions, especially if you sense that extra help is needed: "Would it be OK if I texted or called you to check in once a week?" "Can I pick up groceries for you when I'm going to the store?"
- Follow her lead – and tell her you are going to do so: "I know it must be hard to live with this diagnosis and the uncertainty it creates. I would be glad to talk about it if you ever want to. But I respect your preference to not talk about it. Please just let me know if something changes."
- Find another outlet for your impulse to "do something." Join a walk, bike ride (like the MS150), or other activity, as a participant or volunteer, to support people with the condition. It's a great way to honor your loved one. The National MS Society, for example, has a wonderful calendar of events filtered by activity and location.
MS or another chronic illness is often stressful and can create friction in our close relationships. But it can also strengthen those bonds, especially if the people involved can check in with each other and agree to terms for communicating, accepting the boundaries requested by the person with the condition.
I'd be delighted for others to share suggestions. Please add your own tips in the Comments below.
Are you kidding me? Another $749 out-of-pocket… just for lab tests?
It was another unexpected medical bill, even more irritating than usual because I had called the lab before the test was done to clarify the cost. The lab had assured me I would pay no more than $200, even if my insurance company failed to pick up the tab...
To keep reading, please go to Momentum Magazine's MS blog.