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What happens when your partner is diagnosed with MS? Guidance for partners/caregivers of MS Warriors

Don and me at my medical school graduation in 1999 (Neither of us ever expected we would confront my MS diagnosis together 10 years later.)

"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?


In those early days after my diagnosis, it was all about me. How was I feeling? Which doctor would I see? What other tests did I need? Who would cover my shifts at work?


Don, meanwhile, was left to cope with the news largely on his own. Charged with comforting me and trying to navigate a new path for both of us, he had little guidance and support himself. I've realized since my diagnosis that a "life sentence" of MS can be just as hard on one's partner or caregiver as it is for the person living with MS.


What happens when your partner tells you they have been diagnosed with multiple sclerosis?


A diagnosis of MS is often shocking to the patient and everyone close to them. The dynamic between partners may be shifted, and the person diagnosed with MS – who often gets most of the initial attention, well wishes, and medical care - may not realize the impact on their partner. Sometimes I've thought my husband Don has struggled even more than I have with MS. Anxiety, worries about his own health, fear of my MS progression, and the consequences for our family surfaced soon after my diagnosis and have returned from time to time and with each relapse. 


What does this mean for you as a caregiver?


MS affects each person differently. It may be mild, with minimal symptoms; it may lead to severe disability and pain; or anything in between. Learning to live with uncertainty is one of the biggest challenges for both patients and their caregivers. If their partner is suddenly unable to work, the caregiver may face more financial pressure. If they have children, childcare responsibilities may need to be shifted.


Depending on the nature and severity of symptoms, the caregiver may serve as "just" the primary emotional support person or may be far more involved, sometimes serving as a full-time care provider, tending to their partner's physical needs as well. Usually the period immediately surrounding the initial diagnosis is the worst. Caregivers shouldn't jump to conclusions or dismal predictions; while MS may be a stumbling block, it does not often carry a terrible prognosis.    


How do you handle your new role? What are the early steps you need to take? What organizations do you join? Websites to look at? Books to read?


Becoming accustomed to your new role may take time. Don't be too hard on yourself or expect to have everything figured out right away. Here are a few specific tips:


1) Communicate with your partner about how MS impacts you both. Grieve together if you need to. Ask your partner directly how you can provide the best support. Sometimes patients with a new MS diagnosis need space to process what has happened, or they may need distractions to escape those moments of despair. Find out how your partner wants you to help: Provide support at doctor's appointments? Arrange for healthy meals? Deal with insurance companies? Don't make assumptions, and offer specific suggestions of how you can share the burden.


2) Let MS bring you closer: A diagnosis of a new chronic condition like MS can be a huge stress for all involved. But it can also be an opportunity to reprioritize what's really important, to share your feelings and concerns, and connect on a new level.


3) Remember to take care of yourself: exercise, get enough sleep, take a break (find respite care for your partner, if needed), call on your support circle – friends, family, colleagues, places of worship, neighbors – for help. Tend to your own health needs so you can be strong and available for your partner.


4) Know that life will go on: Most people with MS have relapsing, remitting MS, and their symptoms will usually get better. Even those with progressive MS can have long, productive lives. Medication options for MS are abundant; they are important for almost everyone with a new MS diagnosis and can dramatically lower the rate of MS progression.


5) Connect with the National MS Society: For support with all-things MS, the National MS Society is there for you. Patient navigators can provide information about MS, locate an MS specialist and resources in your community, and help determine options for insurance coverage (if needed). The National MS Society sponsors events all over the country (including virtual events during the pandemic), offering chances to meet other people affected by MS and to support their important work and research initiatives.  


6) Beware of "Dr. Google": A new diagnosis with multiple sclerosis is overwhelming and generates endless questions.  Often the first tendency is to rush to the Internet. But the Internet is full of confusing, discouraging, often contradictory information. Ask your partner's MS specialist for recommended resources, and you can always count on the National MS Society for up-to-date, accurate information.


7) Books are helpful, but not necessarily "MS" books: Don and I read Dr. Rachel Naomi Remen's Kitchen Table Wisdom in the first days after my diagnosis, for comfort and perspective. I also recommend a good "escape" novel for when you're sitting in waiting rooms or having trouble falling asleep. "MS" books may be helpful, but only after you and your partner have a better sense of what MS is likely to mean for you.


To the partners and caregivers out there – Thank you!  You bring joy and meaning to our lives and help us live our best lives possible. Please share your thoughts and suggestions in the comments below.



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As Healers, Ending Systemic Racism Is Our Work, Too

I was proud to join other Austin-area physicians recently to call for an end to police violence and institutional racism: White Coats for Black Lives.

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

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The Pandemic: Finding joy during quarantine

Clover and I have enjoyed walking several times a week along Shoal Creek, near our house, since the beginning of our quarantine in mid-March. 

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"

        - Coronavirus Rhapsody 


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, 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.



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MS + COVID-19 Pandemic

I am sheltering in place except for frequent walks in the neighborhood, admiring spring's offerings, including this lovely wisteria. 

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.


Continue reading on the MS Connection blog.


Please share your thoughts in the Comments below.



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COVID-19 is wreaking havoc!

I received my Ocrevus infusion last Tuesday. Am I setting myself up for serious illness with COVID-19?



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:  and


Please share your thoughts in the Comments below.



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Here's a ride I was happy to skip this summer when my family and I visited Tivoli Amusement Park in Copenhagen.

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)...


Continue reading here on the MS Connection blog.



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The Importance of Preventive Care

Looking for a terrific New Year's resolution? Get caught up on preventive care!

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.


Continue reading on the MS Connection website...


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I don't want to talk about it: Communicating about chronic disease

Cypress trees along Lady Bird Lake during a recent morning run


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.


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As a doctor, I always advocate for my patients. As a person living with MS, now I have to advocate for myself too.

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.


It was New Year's Eve, after 5 p.m., when I got the bill, so I had to wait until after the holiday for an explanation. Meanwhile I stewed. My deductible was met–it was the end of the year. I didn't even understand what the expensive lab test was. Even with Google and a medical degree (I'm a family doctor), I couldn't figure it out...


READ THE REST on the National MS Society's MS Connection Blog.


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Psst... It's a secret: I kind of like Infusion Day

My most recent Infusion Day earlier this month was a calm, relaxing experience. 

Needles, tubes, IV poles. A medicine dripping slowing into my veins.


And somehow, I find myself almost looking forward to Infusion Day. It feels almost like - dare I say? - a day at the spa!


OK, so I don't like the reason that I have to get the infusion. And getting an IV placed and being stuck in a chair for hours isn't usually part of the Deluxe Autumn Spa Package. I don't enjoy the prep involved either – getting labs drawn, sometimes an MRI, insurance company issues. But I'm fortunate that I don't have any side effects from my medicine. And I've realized the actual infusion day can be kind of great.


Getting my infusion every six months is nearly a full-day affair. From start to finish it's a pretty solid six hours. But I have learned to enjoy it (though I don't want to share that too widely, since I still like the sympathy from my family when reminding them, "I have to go in for ANOTHER infusion!").


On the day before my infusion (if I remember), I pack my special Infusion Day Kit:

-     Fluffy socks

-     A blanket or warm, cozy sweatshirt

-     Ear buds and music (I have Spotify on my phone, but any music-playing device will work)

-     Snacks/lunch

-     Travel mug (filled with warm herbal tea right before I leave for the clinic)


When I get there, I organize my space, placing everything I need within easy reach. Then I sink into the chair. I can relax. I have all day.


The room is peaceful. The enormous red chair is super comfy. I listen to spa music, usually acoustic guitar. The interruptions are few (if you don't count the inflation of the blood pressure cuff every 30 minutes).


I take a less sedating antihistamine [fexofenadine (Allegra) is best] beforehand rather than the usual Benadryl most people receive. My doctor has let me make that adjustment because I don't want to waste my time sleeping. I bring my laptop and get to work.


I work for a national care management company, and I am immensely grateful that I can work remotely, most of the time. I limit phone calls on infusion days, and I often find that my work is more productive than usual with no distractions.      


I get up to make tea – or sometimes the nurses get it for me. I take a short break for lunch, or I eat while watching a webinar.


I feel a quiet, unstated kinship with the other patients, the other MS Warriors. We are united by hope.


At the end of the day, I'm done. No more medicine to take for six months. I've done something important for my health, and now I can try to forget I have MS and move on.


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Fish juice-soaked luggage, forgotten pants, and security line mishaps: Lessons learned from my air-travel mistakes

I love to travel, but flying (especially overseas) is always a challenge.

"What the hell are you doing?"


"Oh my god. I am SO sorry." I was mortified. I had been trying to fit my daughter's suitcase into an overhead bin on an early morning international flight, but in the process, it slipped out and knocked a woman in the head.


Her partner was not amused. "WHAT were you thinking?!? Why didn't you ask for help?" he snarled. I was afraid he might bite me.


Those were the same questions I was asking myself, as I confirmed the woman I had hit was neither bleeding nor unconscious.


"I'm so so sorry… Are you OK? Oh my god, I'm so sorry."


Air travel is hard. Air travel with MS is even harder. Mobility may be a challenge. You may have dietary restrictions or heat intolerance. Yet if you love to travel like me, flying often is a necessary part of the process.


Here are some mistakes I've made and the lessons I've learned the hard way:


1) Don't knock anyone in the head. The corollary, of course, is Ask for help. Be gracious, be apologetic, but if you are not 100% sure you can lift your suitcase into an overhead bin, or walk down the jetway unassisted, don't attempt it alone.  If you're afraid you might spill your drink because of weakness in your hands, ask to keep the whole bottle or can. You don't have to prove anything – you don't even have to explain why you need extra help. It's OK.


2) Don't pack a bomb shell in your carry-on bag. I didn't think that the "trench art" vase I'd bought in Bosnia might cause problems at airport security, but when the agents pointed out that it was made from a bomb casing, I could see their point. Be careful about what put in your carry-on bags. If you have prescription medicines, especially those that require a cold pack, make sure to have the printed prescription, or something to indicate what the medicine is, to avoid any hassles. Make sure your liquids meet the size restrictions. Check out the Homeland Security website for more info.


3) Don't wear shorts on the plane. Dressing in layers for plane travel is essential. Often in the summer the planes are baking on the tarmac and miserable for a heat-sensitive person with MS, but once you're in the air, the zealous AC can overcompensate. Be thoughtful about your travel-day clothes: wear sensible shoes (I am always stunned by the number of women in heels at the airport!), comfortable pants, and, if it's summer, a lightweight shirt (but make sure to bring a sweater or jacket in your carryon bag).


4) Don't get putrid fish juice all over your checked luggage. I didn't know that commercial airlines ever carry frozen fish alongside the passengers' checked bags, but when we picked up our four bags in San Diego for a family vacation a few summers ago, all four bags were soaked with stinky water that had spilled out of a container with dead fish. We spent the first day of vacation doing laundry, and part of the week suitcase-shopping. On nearly every flight since, we have carried on all of our bags, avoiding the often long delay at the baggage retrieval area… and any more fish juice incidents.


5) Don't arrive at the airport 15 minutes before your flight takes off. This wasn't entirely my fault, but on a business trip this summer, the airline (the same one, incidentally, responsible for the fish juice) cancelled my flight and rebooked me at an earlier time. I wasn't notified until the last minute, and I nearly set a new Sacramento-area record for fastest run from drop-off spot to jetway. Although I made the flight, I was a flustered wreck by the time I sat down. Those of us with MS don't need that extra stress. Give yourself plenty of time to get to the airport, get through security, use the restroom, and grab a snack before getting on the plane.   


6) Don't forget your pants. Once I left for a 3-day business trip wearing some casual capris, and I left my professional black pants at home. Why? Because I didn't make a list. With most trips, I make a packing list and stick to it. I save my lists so that now I have one for almost any type of trip: beach, mountains, visit to in-laws, New York City or Beijing – I'm covered. I make minimal adjustments, stick to the list, and I can usually fit everything into my carry-on bags, avoiding both fish juice and long delays at airports to retrieve my stuff.


I think the most important lesson is to Take care of yourself when flying. Bring extra snacks on the plane. Bring cozy socks for a long flight. Stay well hydrated. Plan recovery days for both your travel destination and when you come home. Avoid the temptations, such as free alcohol on international flights and endless inflight entertainment when you should be sleeping. Have a back-up plan in case your flight is delayed or cancelled.


The benefits of travel far outweigh the difficulties. Don't let MS – or any chronic condition – be an excuse to stay home. Make the necessary accommodations, and then go see the world! 


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I'm on a podcast!

Hiking in Telluride, Colorado earlier this summer. Hiking in the mountains is as good as it gets for me!

A huge thanks to Dr. Errin Weisman for giving me an opportunity to share my story recently on her thought-provoking and informative podcast, Doctor Me First.


You can check out my episode, Role-Reversal, and also hear other fascinating interviews with women doctors on topics ranging from "Libido" to "Burn-out" to "Wisdom."


Get inspired, and share your comments or feedback below.


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Sharing the News

Don't go it alone on your journey with a chronic illness.

"I have multiple sclerosis."


I've shared this news with family, colleagues, and friends – old and new – many times over the years. Sometimes I have been awkward and clumsy in my approach. Sometimes I've been embarrassed or feel guilty that I haven't shared the news sooner. Sometimes I've worried about the response.


In the weeks after my diagnosis, I revealed my status as "MS patient" to relatives, close friends, and my co-workers at the clinic where I worked. I set up a meeting with my boss and told her face-to-face. Keeping my diagnosis secret, I thought, would be more stressful and difficult than being open about it.

And… my little community rallied, offering playdates for my kids, delivering meals, sending cards and emails of support.


But unfortunately, this open approach won't work for everyone. I don't think MS carries the stigma it once did, but misinformation is still prevalent. Over the years, I have been more cautious about my revealing my diagnosis, though I've generally found that others respond well when I decide it's time to share.


Here are some tips I'd like to pass along:


1) There is not a one-size-fits-all approach to revealing an MS diagnosis. Take your time and strategize. Telling my parents was different from telling my kids, though they all needed reassurance I would be OK. My boss needed to know that I felt confident I could return to work – and I didn't burst in and tell her the first day but took some time to process and plan. I find it helpful to think about who I am telling and their likely reaction ahead of time, and then I consider the best approach to address their concerns.


2)  Be prepared to educate your audience about MS. In my experience, most people have heard of MS, but few know much about it. They may think: "It's some kind of brain disease."  Or, "It causes people to need a wheelchair." But that may be the extent of their knowledge. Few will know, for example, that we now have over 15 different medications that slow progression of MS, that while it can be debilitating, many people with MS live normal lives and are able to work, travel, and function like anyone else.  You can refer people to the National MS Society for more information if they are interested.


3) Be proactive: Share your feelings and symptoms, but also share your plan for getting treatment.  If you are starting from a place of complete hopelessness, the person hearing your news may be overwhelmed and discouraged from offering help. If you don't have a plan yet, it's OK to say, "I am so mad this happened to me, and I don't know what's going to happen next, but I'm going to figure it out."


4) Beware of the "fixers." Some people will offer unsolicited advice and flood you with get-well strategies. A co-worker brought me a book about restrictive MS diets days after my diagnosis. It was a thoughtful gesture, but I wasn't ready to radically alter my diet while adjusting to the news myself. A good friend with MS was offered essential oils to cure her – a well-intentioned, but misguided suggestion. While I appreciate the concern that these problem-solvers bring to the conversation, most of the time I find the best approach is to thank them and tell them I will discuss their suggestions with my doctor.


5) Ask for what you need. People want to help, but many don't know how. Tell them how to lessen your burden:  do you need help with housework, childcare, grocery shopping, transportation? If so, ask and be specific. If you don't need extra help, you can always say "Thanks for listening. That's all I need from you right now," letting the person know that nothing more is expected at the moment.   


If you feel that you can't share your news openly, at least tell someone. Don't go through your MS journey alone. The National MS Society offers support services and MS navigators who can provide guidance and advice.


Please share your stories and more tips in the Comments section below.


Please add your tips below for healthy living on a budget.



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Living Healthy on the Cheap: Diet and Exercise on a Budget

I exercise several mornings a week on a very old Stairmaster that I bought second-hand years ago. I get a great work-out without leaving the house!

I'm cheap. Though I like to think I've become more reasonable with age, I still can't shop or make travel arrangements online because I'll spend way too long looking for the best "deal." I wear shirts and sneakers with holes because it seems wasteful to throw something out that is still functional, if not fashionable. I continue to use electronic devices that are scratched and ancient, by most standards – I don't want to spend the money on the new version if it's not essential. 


Although sometimes I'm too stingy, I know that because of MS, I need to be extra careful with my spending habits.


I'm also passionate about preventive care and healthy living.  Over the course of my career, I've coached thousands of patients - usually people with low incomes - about how to exercise and eat a healthy diet. Fortunately for them and for me, healthy living doesn't have to be expensive. And the benefits, both short- and long-term, are well worth the effort and planning that may be involved.


Tips for exercise:


  • Exercise is free! You do not need to join a gym or get fancy equipment to work out and to get in shape. Ignore the ads for the latest gadget! Walking or running are great forms of exercise that can be done almost anywhere. If you live in a climate that keeps you indoors some of the year, you can still find a large indoor space, such as a shopping mall, where you can walk. In warmer weather, many cities have great public pools for swimming. Also, many smart phone apps are free and offer a wide range of exercise options that can be done in your own home with no equipment other than a chair. I like the Johnson & Johnson app, but there are many, many others.


  • Check out the YMCA: The YMCA has locations all over the country and offers sliding scale membership fees for those with lower incomes. My family and I love the YMCA for their excellent programs for kids, wide range of classes (usually included with the monthly membership fee), and great strength training and aerobics equipment. We have also found that our Y membership travels with us: We can use other YMCA facilities around the country for no additional cost.


  • Visit used sporting goods stores: One of my favorite and most convenient ways to get a great aerobic workout is on a Stairmaster that I bought, used, about 10 years ago. I work up a sweat on the Stairmaster several days a week, and I can read, watch a video, and even keep an eye on my kids while I'm working out. Second-hand sporting goods stores often have a variety of barely-used equipment. I like having a Stairmaster at home because I can work out no matter what the weather is like outside and be available for my family.


Tips for healthy diet:


  • Prepare your own meals:  Meals prepared at home often are healthier and less expensive than food purchased at a restaurant. Food prep doesn't have to be complicated or time-consuming. Online recipes are abundant and very helpful. Look for plant-based meals and avoid too much butter or high-fat dairy or meat. 


  • Focus on fruits and veggies: Try to get AT LEAST 5 servings of fruits and vegetables per day. Buy in-season produce to save money, and look for coupons, which may come in the mail or be available in fliers at the store. Produce at stores like Costco may be much cheaper than regular grocery stories, and you can freeze what you don't use to make smoothies or stews later on.


  • Look for the healthy options on fast food menus: If you don't have time to cook, and you're in a rush, seek out the fast food venues with healthier options. Many fast food venues have salads on the menu, which are usually a pretty safe choice. Choose fruit instead of chips or fries for a side item. Get tap water to drink – it's free and healthier than just about anything else you can order.


Exercise and eating a healthy diet are the most important forms of self-care. For us MS warriors and others with chronic disease, they may be even more critical to our health and well-being.


For more diet tips, checkout this Healthline article.


Please add your tips below for healthy living on a budget.



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Coping with an MS Diagnosis

Getting diagnosed with MS was a shock. But I've learned to make the best of it.

"You have multiple sclerosis."


The neuroradiologist was calm as he revealed my diagnosis. But I was stunned.


Suddenly everything made sense: the constant dizziness, double vision, taste changes. Even the numbness in my finger months before, the cloudy vision earlier that fall—it was all connected. But it was a terrifying and tragic moment, and the days and weeks that followed were some of the hardest of my life...


Keep reading here on the National MS Society's wonderful MS Connection Blog.



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Career + Parenthood + MS: An Impossible Combination?

My daughters, Ella and Clara, surprised me on Mother's Day with vegan pancakes and fruit salad. Despite my inadequacies as a parent struggling with a busy job and MS symptoms, my kids are turning out to be pretty terrific.

My daughters were two and four and a half. Every moment we were together, they wanted to play Candyland or build forts or make cookies out of playdough. When I wasn't with them, I was at the clinic, working a busy job as the director of a health center for uninsured patients. I struggled to help my patients cope with depression or chronic pain, control their diabetes or heart failure, find creative ways to fill their prescriptions. I barely had time to breathe.


Then I developed dizziness, cloudy vision, and taste changes. Learning I had MS, I felt like someone caught in a mob who has fallen down and is being trampled on.


The diagnosis was serious; the timing was terrible. Already, I was overwhelmed and exhausted. I had no time for hobbies, walks with friends, reading books, or other stress-reducing activities. My own self-care was suddenly urgent and important, and it had to be incorporated into my too-busy life. But how?


I made self-care a top priority. If I wasn't healthy, I couldn't be an effective parent or doctor. I had to be innovative and even a bit rigid with some of my self-care strategies. I couldn't play Chutes and Ladders or put together the alphabet puzzle every time the kids requested my participation. But I made it work, and I am thankful to have good health AND two well-adjusted, amazing kids now.  


Here are some ways I maintained self-care:


1) I exercised (and continue to exercise) every day. I do it first thing in the morning, before anyone else gets up. I bought a used Stairmaster to work out when my kids were too young for me to leave them alone at home. I took them with me in a jogging stroller when they were very young, and I wanted to run. Exercise is my antidepressant and key to my self-care strategy.


2) I asked for help. I reached out to friends and family and told them I was overwhelmed. My husband is a hospital-based pediatrician with long hours, often working weekends and evenings. I lined up friends to come over to help me with dinner and bedtimes when my kids were young. Often, they would bring a meal or help me cook. I think a lot of moms think they are supposed to "do it all." But when I admitted defeat, I found the support I needed to get through some tough years.


3) I maintained a healthy diet. I'm a vegetarian, and I have raised my kids to be vegetarian. We still eat french fries and mac and cheese sometimes, but we all aim for at least 5 servings of fruits and veggies every day, and I know we are all healthier as a result.


4) I never missed a visit or other appointment related to my MS. I have always taken my medications consistently, and I make sure to follow my doctor's instructions. As a mom, I know I can't afford for my condition to worsen; I have to be as healthy as possible for my kids.


5) I learned to say "No". I try to ask myself before committing to a new activity if I really have time to take it on, if it will bring me joy, and if it will benefit my family. If not, I usually let it go.


6) I learned to meditate. A few years ago, at the urging of some physician friends, I took a mindfulness-based stress reduction class. Learning mindfulness meditation helped me with anxiety, stress, and insomnia. It also helped me accept my MS symptoms and "live in the moment" in a more authentic way.


Being a working mom with a chronic condition will never be easy. Some days I am impatient and irritable, and I yell or criticize when I shouldn't. Sometimes I can't even blame it on MS. But after almost 10 years living with MS, I feel grateful that we have more good days than bad, and I'm proud that my kids are growing up to be thoughtful and caring young women.


Below, please add any comments, questions, or tips for parenting through difficult times. And check out this video of me interviewing my daughter, Ella, about what it's like to have a mom with MS. 



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Lessons from the Road

The morning of Day #2 was The Best! The "Challenge Route" through Buescher and Bastrop State Parks was the highlight of the MS150 ride for me. 

The MS150 pushed me to my limits, connected me with other MS Warriors and supporters, and brought intense highs and lows. I'm so glad it's over. And I'm so sorry it's over.  Here are some lessons from my weekend adventure, biking over 160 miles from Houston to Austin:


·         Pickle juice is really a thing. It is packaged and sold. It is a favorite drink along the MS150, available at every break point. It's supposed to help reduce cramps, and hey, it worked for me!


·         My mom is Super Woman. She is 26 years older than I am, and I yet I had to tell her – many times - to slow down so I could keep up during the ride. She never complained, never asked to rest, and never stopped inspiring me with her strength and perseverance. I need to buy her a cape!


·         I am not alone. Having MS can feel so isolating. Sometimes I feel like no one understands my struggle to live with my symptoms and the burden of uncertainty that MS has brought. But throughout the MS150 weekend, I met so many people who understood. Thank you, Michelle, Audrey, Reese, Mike, Lansing, Kristy, and everyone else who shared their stories or listened to mine and made me feel validated and valued.


·         I don't like a flat road. The first 40 miles of the route, through Houston and its suburbs, is devoid of even a slight incline. It's not hard, but it's boring. I prefer the ups and downs. Without riding uphill, you don't get to coast downhill. (I think there may be a metaphor here!)


·         Community is everything. The support from my Tacodeli teammates (especially team captain Lisa Steffek) and the MS150 community gave me hope and helped propel me forward. Bates, Cesar, and Luis drove from El Paso to ride with me. Along the route, I wore my "I Ride with MS" jersey like a badge of honor. Dozens of people offered encouragement, often as they whizzed past me on their bikes.


·         Setting and then accomplishing a goal feels great! I welcome the sore muscles and exhaustion because they remind me that I worked hard. For the rest of my life, I always want to be reaching towards a new goal, striving to do more. I encourage everyone to set a goal – something tough, but attainable - and Go For It!


Finally, I am overcome with gratitude. Thanks to everyone who donated to the National MS Society in support of my ride. (It's not too late to contribute if you still want to support their amazing work:


Thanks, also, for the encouraging texts, emails and well wishes from so many friends. Each one cheered me up - especially two-thirds of the way through Day #1 when I was ready to collapse.


I am so fortunate that I could do this ride, and I look forward to the next challenge.


Please share your most important goals below. Or if you rode the MS150 (or volunteered or cheered someone on), share your Lessons from the Road in the Comments below. 



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MS150 2019: I am really up for this?

My mom and I recently completed a 63-mile "training ride" during the LBJ 100 Bicycle Tour in the Texas Hill Country.

After months of training - 6 a.m. spin classes at the YMCA, long rides on the Southern Walnut Creek Trail, and the recent LBJ 100 ride in the Texas Hill Country - I am going to do it again: 168 miles from Houston to Austin during the last weekend of April. This will be my second time participating in the MS150, and for much of the time leading up to it, I've been feeling fine: I got this! But….

Now, as the weekend approaches, I am getting scared. Am I really up for this? I was in better shape last year. Even though I didn't decide to ride until five weeks before the race last time, I was running long distances and working out daily. Also, we had ideal weather on the ride last year - it can't possibly be that good again. And - dare I say it? - I'm sick of training! I've been struggling to get out on the trail. It's grueling and time-consuming. I can rattle off a long list of preferable activities.

But I have reason to hope I can do this again. My MS has been cooperating. I had some increased dizziness earlier this year, but it has dissipated. My recent MRI showed "no changes," indicating no disease progression. My cousin Bates, who helped me through every mile of the ride last year, is coming back again with two friends from El Paso to accompany me. And my mom, my most consistent support person throughout the course of my illness, is riding with me. Nine and a half years ago, she walked me up the stairs of my house, after the spinal tap that confirmed my diagnosis and then made me so sick I couldn't get out of bed. She was with me for my first ocrelizumab infusions. Next week, she will depart Houston with me and 9,000 more cyclists, as we head home on our bikes to Austin. She has trained so well that I will be struggling to keep up.


Last year, I was proud to join the ranks of the Top 300 Club of fundraisers, raising more than $7,500. This year, I've more than doubled my fundraising. All that financial support, which goes to the National MS Society's amazing research programs, advocacy efforts, and patient navigator programs, will also be a great motivation for me to finish this race. I am so grateful and humbled by the support from so many people who share my vision of a world free of MS. My trepidation will be my secret weapon: I'll finish this race and make you proud.


Thanks to all of you who have supported my race and have lifted me up in so many other ways during my difficult moments these last nine and a half years. If you want to learn more about the ride or make a contribution, please see my fundraising page: 





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Preventive Care, Part 3: Immunizations - Fact or Fiction?

This healthy woman has had all of her immunizations and preventive care! (Art work was provided by my daughter, Clara)


·         Vaccines may cause autism – we don't know for sure.

·         Flu shots are overrated and sometimes actually cause people to get the flu.

·         Immunizations contain toxic chemicals that lead to brain damage in children.

·         Vaccines can trigger immune reactions that often cause autoimmune diseases like MS.

·         Vaccines are a government conspiracy to create profits for pharmaceutical companies.



Immunizations are one of the most important advances in public health of all time. Immunizations save lives, reduce hospitalizations and overall health care costs, and improve quality of life. With rare exceptions, they are safe and well-tolerated. The evidence is clear that they do NOT cause autism or brain damage. The risk – if any - of vaccines triggering an autoimmune disease such as MS is very low and outweighed, in almost every case, by the benefits of immunization. Making sure you stay up-to-date with your vaccines is one of the most important ways to stay healthy.


Of course, always consult with your doctor about which vaccines are indicated for you. Live vaccines are not recommended for people on certain MS medications, for example. The National MS Society also provides excellent guidance on their website.  Depending on your age and other risk factors, these are the most common immunizations that are recommended:


1) Influenza: Flu shots should be given to virtually everyone, at every age, every year. The flu shot takes about two weeks to kick in, and mild side effects can occur. But flu shots do not cause the flu, and only rarely are they contraindicated. Flu shots are safe, and they save lives and prevent hospitalizations. Did I mention flu shots do NOT cause the flu? The CDC is a great source of additional info


2) HPV: HPV vaccine helps reduce the risk of many types of human papilloma virus (HPV) infection, which is responsible for nearly all cases of cervical cancer and genital warts. HPV also can cause cancer of the throat, vagina, vulva, and anus.  HPV vaccination is recommended to all girls and boys beginning at 11-12 years old and to men to age 21 and women to age 26. It dramatically cuts the risk of HPV infection and, therefore, HPV-associated cancers. Last fall (Oct. 2018), the FDA approved use of the vaccine for both men and women up to age 45, though studies of effectiveness in this older age group are ongoing.  


3) Shingrix: Hurray for Shingrix! Shingrix is the new shingles vaccine, just released in 2017. It is far more effective than the previous vaccine (Zostavax) at preventing shingles and especially its dreaded and painful complication, post-herpetic neuralgia. The CDC estimates that about 1 million people get shingles each year, and about 15% of them continue to have pain two years later. The Shingrix vaccine, recommended for adults beginning at age 50, is a series of two vaccines, separated by two to six months. It is more than 90% effective at preventing shingles. 


4) Td and Tdap: Td is a tetanus booster shot, and Tdap is a combination vaccine designed to protect us against tetanus, diphtheria, and pertussis. Rates of tetanus (an often fatal infection caused by spores of bacteria in dirt and animal feces) have fallen >95% since the 1947, largely due to the success of the vaccine. However, sporadic cases still occur. Those who are not vaccinated or have failed to get the recommended booster shots have a higher risk of infection. Pertussis, or whooping cough, is generally more of an annoyance to older children and adults, but it is a particular concern for very young infants, who can die from pertussis. By vaccinating adults - especially those who have contact with infants - we help create herd immunity and protect infants from what can be a dangerous infection.    


5) Pneumonia: Pneumonia continues to be a leading cause of hospitalization and death among older adults. An estimated 900,000 people get pneumococcal pneumonia each year, resulting in as many as 400,000 hospitalizations and 19,000 deaths. For adults, two different pneumonia vaccines are available (PPSV23 and PCV13). Each protects recipients against different strains of pneumococcal bacterial infection. The vaccines are recommended for all adults at age 65, but may be given earlier depending on other risk factors (such as having diabetes, asthma, heart disease, cancer, or being a smoker). They cannot stop all forms of pneumonia, but they cut the risk significantly and save lives.    


The adult vaccine schedule has become more complicated over the years. (I think the two pneumonia shots are especially confusing!) But your doctor can help determine which immunizations you need. And you should keep track of your immunizations and help remind your friends and family members get their recommended vaccines as well.





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Preventive Care, Part 2: Isn't having one chronic disease enough?

I finally made it to the beach this week in Puerto Rico. I spent the week skipping out to explore San Juan in between meetings for work. What a beautiful place!

I have MS. Isn't that enough? Haven't I already received my allotted dose of bad luck regarding my health?


Unfortunately, those of us with MS are just as likely as anyone else to develop other chronic diseases. Some of us may even be at increased risk, due to adverse effects of certain medicines and the disabling effects of MS itself, making it hard to stay active.


Many chronic diseases – like MS - are beyond our control. We can't do anything to prevent them. The causes are unknown, and the course of the disease is uncertain.  


But other chronic diseases, including some of the most common and damaging, are often preventable. While other factors, such as genetics and the environment, play a role, in many cases, our lifestyle choices - especially diet and exercise - can doom us to diseases like diabetes and heart failure or significantly improve our odds of a healthy, long life.


(Warning: I'm jumping on my soapbox again.) There IS a magic formula to improve longevity and quality of life. It's not trendy or exciting, but I can't emphasize it enough: Find a way to exercise most – or all – days of the week. Eat a well-balanced, mostly plant-based diet. Don't smoke. Don't drink to excess.


AND get tested for chronic disease. As with screening tests for cancer, screening for chronic disease can help identify risk factors and detect disease early, when it is usually easier to manage.


Heart disease and stroke are still the #1 and #4 causes of death, respectively, in the U.S. High cholesterol, hypertension, and diabetes all significantly increase the risk for both. Diabetes, which now affects 9.4% of the U.S. population – also can cause chronic kidney disease, blindness, and nerve damage and pain.


Screening tests are easy to do, and a doctor can order the right tests and help interpret the results. Here are some of the most important tests that are widely recommended:


·         Blood pressure checks should be done routinely at each visit with the primary care physician. Nearly 30% of U.S. adults have hypertension, which increases the risk of heart attack, stroke, and chronic kidney disease. Hypertension is sometimes called the "silent killer" because it usually doesn't cause any symptoms, yet it can still lead to significant damage.


·         Cholesterol screening is recommended for most men starting at age 20-30 and women starting at age 30-35, though guidelines vary and other risk factors for heart disease and stroke should be considered.


·         Diabetes screening should be done, especially since almost a quarter of people with diabetes are unaware of their condition. The American Diabetes Association recommends screening for type 2 diabetes annually in everyone starting at age 45 and in those younger than 45 with major risk factors.


·         Bone density tests are used to screen for osteoporosis, a condition that can lead to hip, spine, and other fractures by causing weak bones. Usually bone density tests are recommended for women beginning at age 65, but they may be considered earlier depending on risk factors. Older men may also benefit from bone density testing, depending on age and risk factors.


A couple other screening tests to consider include testing for HIV and screening for mood disorders such as depression and anxiety.


I'm stuck with a life sentence of MS, and I can't do anything to change that. But I am doing everything I can to avoid additional disease. I hope you'll do the same. Check out this amazing myhealthfinder app to find out exactly what tests may be recommended for you. And please share your stay-healthy strategies in the comments below.





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