Life with MS

“The best tunes are played on the oldest fiddles.” - Ralph Waldo Emerson

The trajectory of my life changed the day I was diagnosed with multiple sclerosis, a disease I never heard of or wanted. This unwelcome guest disrupted my otherwise blessed life, leaving me frightened and anxious. With nowhere to turn in those pre-Internet days, it would be seven years before an FDA-approved medication would provide any sort of hope for my future. Who could I talk to about living with this disease? Where could I turn for answers to my nagging questions? I felt as if I were in a dark abyss with no way out.

It’s likely that your diagnosis looked different than mine. Today, doctors immediately advise newly diagnosed patients to start on a disease-modifying medication. They’re also more open to discussing complementary medicine, something not widely accepted decades ago. With a growing number of FDA-approved medications, an Internet to rely on, and the strong support of the MS community, times have thankfully changed for the better.

I wish disease-modifying medications were around for me to prevent any damage that might have occurred in the seven-year gap between my diagnosis and the first MS-approved drug. My MS journey began when I was in my 20s. I continued to live my life pretty much as planned with a new marriage and, four years later, glorious motherhood. I immediately began advocating for others by writing letters to the editor, leading support groups, and volunteering for MS-related fundraisers. My goal was to help patients feel less afraid and more informed about their recent diagnosis.

I knew from the start I’d never allow MS to be the sum total of who I was, and worked to maintain a positive attitude despite the unpredictability of the disease. Visualizing the glass as half-full wasn’t always easy, but it certainly paid off. Now in my 60s, I often reflect on the important lessons I’ve learned over the years, ones that served me well. I’d like to share some of them with you:

Exercise within your abilities: Physical activity becomes more and more important as we get older. Exercising within your abilities for as little as 10 minutes a day, several times a week, is superb. My routine changed over the years as my abilities changed. Be flexible, do something you enjoy, but keep moving. (Please speak with your physician before starting any exercise program.)

Staying active helps to:
• Maintain muscle strength and improve coordination.
• Maintain and increase endurance.
• Improve flexibility and range of limb motion.
• Improve cardiovascular fitness.
• Prevent pressure injuries.
• Control weight.
• Reduce the likelihood of becoming constipated.

Eat a balanced diet: Critical to healthy aging, a balanced diet can prevent many comorbidities such as heart disease or certain cancers. I think of it as using food as medicine. After battling weight gain all my life and spending years of yo-yo dieting, I have realized that the key is to eat sensibly. A few years ago, I learned I had irritable bowel syndrome and removed gluten, sugar, and dairy to get rid of gut pain and bowel and bladder issues. Today I eat mostly plant-based foods. Following this plan helps me feel healthier, and I suggest you find a plan that works best for you. Consult with your doctor or a qualified nutritionist before starting any specific nutrition plan.

Complementary medicine: I rely on chair yoga to keep muscles stretched, which helps with balance issues, and I meditate for 15 minutes at bedtime. Meditation reduces anxiety and provides an overall feeling of calm to help me sleep better.

Cognition: Keeping your brain healthy is especially important as you age. It’s helpful to read books and newspapers, work on crossword puzzles, learn a new language, or find any activities that interest you to give your brain a good workout to support better brain function.

Stay curious: Unfortunately, the world is filled with people who prey on the older population for financial gain. Do your research before saying ‘yes’ to anything you’re unfamiliar with. I recently saw a person on social media promoting her ability to cure many autoimmune diseases. Out of curiosity, I researched her background and found her credentials were lacking. By staying curious, asking questions, and doing your research you can save yourself a lot of time, money, and aggravation by saying a firm ‘no.’

Relationships: It’s important to nurture relationships with friends and family. Social connections can provide companionship, support, and affection. Life is sweeter when you share it with others, and it’s also good for overall health and mental wellness.

Know your limitations: Some people have a hard time saying ‘no’ to personal and professional invitations. It’s important to know what hours you’re at your best and schedule yourself accordingly. Ask yourself: When is your best or worst time of day? Do you require a daily nap and if so, what time of day? When is your typical bedtime? Are you able to stand for long periods of time, or do you need to sit? How far is it from, let’s say, a parking lot to the inside of an office? Know your limits, ask questions before responding, and request accommodations whenever necessary. Create a schedule based on what works best for you. You are the only captain of your ship.

One last thing: We need to change the narrative around aging with MS as something that’s not bleak, but simply another chapter in our lives. Our demographic continues to add great value to the MS community and to all of society through our wisdom and experience. Don’t count us out, as we are an important segment of the population. We’ve overcome many obstacles in our lives and, as Stephen Sondheim wrote, “Good times and bum times, I’ve seen ’em all and my dear, I’m still here.” Yes, we are actively, passionately, and intellectually still here.

To learn more about Cathy, please visit the home of her award-winning blog, An Empowered Spirit, at anempoweredspirit.com.

Links Cathy Recommends

Exercise: uofmhealth.org/health-library/hw189911
IBS: mayoclinic.org/diseases-conditions/irritable-bowel-syndrome/diagnosis-treatment/drc-20360064

Sensible Eating: nia.nih.gov/health/choosing-healthy-meals-you-get-older
Complementary Medicine: nationalmssociety.org/Treating-MS/Complementary-Alternative-Medicines
Cognition: hopkinsmedicine.org/health/wellness-and-prevention/maintaining-a-healthy-mind-as-you-age
Relationships: psychologytoday.com/us/blog/how-healing-works/202103/the-power-relationships-we-age