Lisa Doggett

I was honored this evening to deliver the keynote address for the BP MS150 Austin celebration. I have written my story, but I haven't often spoken about it, so this was a fairly new experience for me. Here is my story as I told it today to MS150 cyclists, volunteers, and supporters:

I woke up on November 2, 2009 with dizziness. I remember the exact date because it was two days before my daughter Clara's second birthday. I thought I was getting a cold, and I tried to ignore it all week. I'm a family doctor, and I tried to keep up my usual schedule seeing patients and teaching students who rotated through my clinic. I tried to take care of my kids, Ella and Clara. They were two and four – not exactly independent.

The dizziness was constant. Nothing made it better or worse. I kept expecting it to turn into a respiratory infection or the flu, but instead I started getting other weird symptoms like double vision and taste changes. Like a lot of people with undiagnosed MS, I thought I must have a brain tumor. Even as a doctor, I couldn't come up with any other diagnosis to explain my symptoms.

When I got an MRI that was highly suspicious for MS, I was shocked. I was 36 years old. I was a health nut, a vegetarian. I exercised every day. I shopped at Whole Foods. I had no family history of MS or other autoimmune diseases.

And I remembered the first person I had met with MS. When I was a medical student in the mid 1990s, I met a man with progressive MS who was admitted by my team to the hospital with an intestinal obstruction. He was in excruciating pain, and severely debilitated – rigid, unable to work, and barely able to move. He must have required near constant nursing care, even before he came to the hospital.

I realized that I could end up like my patient. And after I got a spinal tap, which confirmed my diagnosis, that's exactly what I thought was going to happen. Two days after my spinal tap, when I thought I was supposed to be recovering, I got so sick I couldn't get out of bed. I still had bad dizziness and the other symptoms, but I also started vomiting. I was weak, exhausted, and so so depressed. I had a supportive family, and health insurance – the means to get good care. Yet I felt like my future had just been stolen from me or obscured by an ominous dark cloud.

An MS diagnosis can be devastating – physically, financially, emotionally. It often strikes people who are young and healthy. It doesn't discriminate.  Its course is unpredictable and random. It's a bizarre disease and that still a leading cause of disability in young adults. Overcoming my symptoms and learning to live with the uncertainty that MS created has been one of the biggest challenges of my life.

Yet I was able to confront those challenges and go on to lead a pretty great life because of people like you. Just a few decades ago, there was no treatment for MS. The prevailing sentiment among neurologists was "Diagnose and Adios" – make the diagnosis of MS and then say good-bye because nothing more could be done.  In the last 20 years or so, the advances in treatment for MS have been astounding. Now we have more than a dozen medicines that reduce the progression of MS.

The National MS Society has championed and helped fund that research. They also provide services and support for people with MS and advocate for public policies to improve access to care. They are able to do that – and I am able to stand here today – because of people like you. Your participation in the MS 150 is an incredibly important way to raise awareness and funds for MS.

We still have a long way to go. An estimated 2.3 million people live with MS worldwide – many of them suffer terrible disability, fatigue, and pain. But your participation in activities like the MS150 helps dramatically reduce the frequency that those of us with MS end up like my patient back in the mid-90s before treatments were available. It helps provide support for MS Warriors who don't have a strong support circle, who don't have health insurance. And it means that when I have another relapse, there will be another medicine for me to turn to.

I was able to ride the MS 150 for the first time in April as a proud member of Team Taco Deli. It was such an empowering experience – truly a highlight of my year. I loved the festive atmosphere, the people along the way who came out to cheer us on, the well-organized rest stops with the buckets of every snack you could think of. I was especially excited to be surrounded by a community of people who shared my love of the outdoors and were helping to support those of us with MS, helping to fund research that will one day lead us to a cure.

I never thought, when I was lying in bed after that spinal tap that I would ever be able to ride 168 miles from Houston to Austin. I also didn't think I would be able to continue my work as a family doctor. I didn't think I could raise my daughters – who are now 10 and 13 – with my husband and partner Don. All of them are here with me now, and I wouldn't be here today without them. I didn't think I would be able to write a memoir about my experience, called White Spots and Black Holes which are common findings on a brain MRI when someone has MS. But I've been able to do all that and more because of the support of people like you. Thank you for being here, and I hope to see you on the road again next April.

I just returned from Barton Springs Pool, the iconic spring-fed swimming pool, 1/6 of a mile from end-to-end, just across the lake from downtown Austin. We had a short break in the rain and decided to visit that magical spot for a short swim and meet-up with visiting friends. Summer is still going strong here in Texas, and the only signs that fall are coming are the pumpkins starting to pop up at local grocery stores.

But other parts of the country are experiencing the first signs of autumn, and soon it will be here too. I can't wait!

Here are some tips to make the most of this beautiful season:

1)     Catch up on your health screenings: Checking in with your primary care doctor may not be your top priority, and it's easy to put off, especially if you're healthy or if you already see a specialist regularly for a chronic condition. But staying up-to-date with screening tests for cancer and chronic diseases, like diabetes and hypertension, is very important and may even save your life. Fall is a great time to see your doctor, who is probably back from summer vacation and open for business. For all women, testing for cervical cancer (age 21 and up) and breast cancer (usually starting around age 45 or 50) is strongly recommended. Women with risk factors, some men, and all women by age 65 should be screened for osteoporosis. All adults also should be screened for colon cancer (usually beginning at age 50), HIV, high cholesterol, diabetes, and other conditions, depending on your age and risk factors.

2)     Get immunized: Immunizations are not just for kids; they are important for adults of all ages. A flu shot is recommended for everyone, every year, and the vaccines are available nowl. Flu shots do not cause the flu, and there are few contraindications. Tetanus shots are given every 10 years (One of those should be a TDaP). The new Shingrix vaccine is recommended at age 50 to prevent shingles (even for those who received the previous shingles vaccine called Zostavax). Two pneumonia vaccines, PPSV23 and PCV13, are recommended at age 65 (generally separated by a year) but may be given sooner depending on other health conditions and risk factors. 

3)     Take precautions to stay healthy: Respiratory viruses are common in the fall and winter. Do what you can to avoid getting sick. Vitamin C and echinacea don't work. I wish they did, but studies do not show that they are any better than placebo. But eating a health diet, getting enough sleep, and especially washing your hands regularly will help keep you from picking up an infection.

4)     Enjoy cooking again: In the summer, I'm not excited to spend time at the stove or to turn on the oven when it's already 100 degrees outside. But in the fall and winter, cooking can be pleasant and comforting. I love finding healthy, vegetable-packed soup recipes, roasting veggies, or making a big pot of risotto.

5)     Plan early for the holidays. I feel like the holidays sneak up on me every year and are a huge source of stress. Planning ahead can help. Book plane tickets now if you're plan to fly somewhere over the holidays. Consider shopping early to avoid a big rush at the end (and talk to friends and family about cutting back or giving nonmaterial gifts). Be careful to avoid overscheduling or raising expectations too high.

6)     Exercise! Developing a daily (or almost daily) exercise routine can do more to improve health than any medication. With cooler weather coming, sometimes that routine may need a little adjustment. In cooler climates, you may need to move your exercise indoors (or in Texas, I can move back outdoors!). Most authorities recommend at least 30 minutes of moderate-intensity exercise most days of the week. I like to exercise first thing in the morning before another activity gets in the way. It's a great way to start the day, leaving me with more energy and a sense of accomplishment. Make exercise fun with a good workout mix, fun group class, an audiobook, or exercising with a friend.

For more suggestions, I found a great article from Reader's Digest.

What are some of your favorite fall activities or suggestions for staying healthy?

"How did this happen?"

"Why me?"

"It can't be! Why? Why? WHY???"

I know from personal experience (unfortunately) that getting diagnosed with a life-altering or chronic disease is often a miserable, depressing, terrifying experience. It's natural and OK to be angry, to be furious, at fate, at whatever randomness in the universe led to the diagnosis. Cry and scream and sulk and refuse to get out of bed. Go through the "Five Stages of Grief".

And then, finally, after days or weeks or months (don't let it go on longer than a few months), you have to GET OVER IT! You have to get out of bed and start moving forward. Yes, the disease has left you with a heavier burden. You probably have to take medicine and go to the doctor more often. You have symptoms and side effects. You have all sorts of limitations you don't want, didn't expect, and don't deserve.

When I was first diagnosed with MS, and for many months afterwards, I felt like MS was a big dark cloud hanging over me. I couldn't plan my future, since the cloud obscured everything. Before MS, I had had plan: I wanted to continue my work as a physician. I wanted to raise my daughters. I wanted to travel. MS was DEFINITELY not part of the plan.

But gradually I realized that I needed to suck it up, stop the pity party, and figure out how to live with this thing. Here are some of the steps I took and recommend to others:

1)      Find a really good doctor and care team. Find someone with experience caring for people with your diagnosis. You want a doctor who will listen, respect your opinion, and who is supported by a caring staff. Ask for recommendations from friends and family. Read on-line reviews. Try out more than one doctor if you can't find a good fit the first time.

2)      Focus on your abilities, not your limitations. Everyone has limitations, even Olympic athletes and Iron-man triathletes. Be resourceful and flexible. If you can't walk, swim or bike or find a creative physical therapist. Find and honor your strengths, and maybe you will even uncover new skills. 

3)      Define and grow your support circle. See my earlier blog posts about support circles. Reach out to others who share your diagnosis and learn from them, and tell friends and family how to be there for you.

4)      Figure out what you need to lead your best life. You might need more sleep or shorter work hours. I know I MUST exercise every day. Some people with MS even move outside of Texas to be in cooler climates that don't trigger their MS symptoms so much. Defining your needs may require some exploration; get to know yourself better, and make self-care a top priority.

I once had a patient with type 1 diabetes – the kind that usually develops in childhood, requires life-long insulin, and can cause a long list of unpleasant complications including blindness and kidney failure. When I commented that growing up with diabetes must have been difficult, he surprised me.

"Actually, it's helped me take better care of myself," he said.

I've thought of his words many times over the years, and I have tried to apply his wisdom to my own life. I've tried to use MS as an opportunity to get stronger, eat better, exercise daily (modifying my routine as needed to accommodate my limitations).

I have an attitude-relapse sometimes. I have those moments when the fury and resentment return.  But I can't live in that space. I tell myself to get over it! Then I regroup and remind myself to let chronic disease be a launch pad for better self-care, for setting priorities and looking ahead – not with fear but with hope.  

"Go!!!"

My two daughters, Ella and Clara, jumped out of the car and raced over the grass to the door of their grandparents' house. Mylar balloons bobbed behind them as they ran. Don and I followed close behind, rushing to catch up. After months of planning, we had arrived at my in-laws house on the morning of their 50th wedding anniversary. We had pulled the kids out of school and flown across the country from Texas to Pennsylvania.

It was a secret. They were not expecting us. They had planned a quiet day at home and were wondering why we hadn't at least sent a card.

My husband Don is an only child. He is also a bit of a prodigy: a star high school athlete, valedictorian of his class, the first in his family to go to college, (and not just any college; Don graduated from MIT), and the first to go to medical school. His parents are crazy-proud of him, and yet they only see him a couple times a year given the distance, and lack of direct airline flights, between Austin and Scranton.

The only people who come close to capturing as much love and affection from Don's parents are Ella and Clara, the only grandchildren. Don's parents were instantly smitten from the moment they met their granddaughters, during visits to Austin when each child was a few weeks old. Ella and Clara are equally devoted; Clara was in tears after her last visit with them, longing to be together more often. They write letters and sometimes spend hours on Skype when they can't visit in person.

Before we showed up at their door Friday morning, we were worried that someone would reveal our secret, ruining the surprise. Don's extended family and his mother's lifelong best friend knew about our visit because we had invited Don's aunts and uncles to a party – another surprise – the next night. Two of Don's aunts had helped as consultants and party planners. Someone was bound to let it slip.

We were worried, too, that our plan could fall apart. Would Don's father be feeling well, having just returned from a prolonged hospitalization a few weeks ago? His health had been tenuous for months after a stroke and surgery. Would they even be home when we arrived, or would they be grocery shopping or at a doctor's appointment? Would they be in the mood for visitors – noisy, last-minute, messy visitors who would barge into the house uninvited?

But when she saw the kids at her door, with her son standing behind them, holding colorful flowers, Don's mom was flabbergasted – and beyond delighted. "Oh my God! Oh my God!" was all she could say. No doubt. Our secret had remained intact. She called to Don's dad who joined us for tearful, excited hugs at the door. We were laughing and crying and stepping on each other's feet and hugging some more. "You're here!" It seemed impossible.

We barely stopped smiling all day. We shared the other surprises: a set of DVDs that Don had compiled from hundreds of videos on our phones, little treats Clara had wrapped in a cheerful yellow bag, plans for dinner that night and a family banquet the next night. Then Don helped his mom buy and install a new TV, replacing the ancient one – an "antique," I said – that they had in their bedroom. Don's father was almost as excited about the TV as he was about our visit.

Our dinner that night – at a lovely Italian restaurant in nearby Dunmore – was just the right ending to the day. And the extended family celebration on Saturday was the ideal way to honor 50 years of marriage and partnership. Don's aunts and uncles and a few close cousins and friends helped create a magical evening.    

I am grateful that I could share in such a joyful surprise.  My in-laws kept thanking me all weekend for making the effort to pull together the trip and the activities, but they didn't realize how thankful I was to them, for giving Don, our kids, and me such an opportunity. And now I have a new, rare addition to my treasured All-Time Favorite Memories.