Cover Story – Aging Well with MS: Encouraging Stories & Effective Strategies

Part One in a Two-Part Series

By Tom Garry

Two Stories of Aging with MS

Accepting a New Reality
For most people, climbing aboard a ride at Disneyland means being whisked away from everyday cares for a few moments of escapism.

For Mike Zimits, climbing aboard a particular ride at Disneyland meant accepting a new reality – one he had hoped he would never have to face.

“I swore I would never use one of those things,” the Long Island resident says of the motorized mobility scooter that drove him around the theme park during a September 2022 trip to California to celebrate his 60th birthday. By the time he and his family got to Disneyland, however, the toll of a long trip, active schedule, and hot day were wearing on him.

“It was kind of an emotional thing for me,” he acknowledges. “It was hard to put aside my pride and get on the scooter, but what was I going to do? We had three days left in our vacation, and I wasn’t going to let pride ruin the day for my family,” Mr. Zimits says.

It was the second MS-related decision regarding “riding” that the financial industry executive had made in his life, and like the first one, it was made not only with himself, but also with others in mind.

The initial decision dates back almost 25 years, to a point several months after Mr. Zimits was diagnosed with relapsing-remitting MS. “I was a fairly young guy, but I was working too much and eating too much, and so not in the best shape, and I received this diagnosis at a time when we had a second child on the way,” he explains. Looking for a means of responding to the life-altering news that he had MS, Mr. Zimits drew inspiration from Lance Armstrong to alter his life in another way and on his own terms. [Although Armstrong would later lose his titles and be banned from the sport, at an earlier time, he was considered one of the greatest athletes.]

“I had never paid much attention to bike racing, but I was watching TV and caught a few seconds of the Tour de France, which Armstrong had just won. I thought, ‘This guy was facing a life-threatening illness [advanced testicular cancer] not long ago and he just won this incredibly hard bike race. I know how to ride a bike,’” Mr. Zimits explains.

And with that, he climbed on his bike and began pedaling. His travels soon extended well beyond Long Island, and in the years that followed, Mr. Zimits formed the nonprofit MS Great 8 Foundation with cycling friends and raised roughly $1.4 million for MS organizations and causes on trips that took him around Lake Ontario, from Maine to Times Square, and from Boston to Washington, D.C. He also participated in four European Pro-Am cycling events.

Mr. Zimits kept riding despite progression of his MS, an initial diagnosis of brain cancer in 2013, a recurrence of his brain cancer in 2015, followed by chemotherapy and radiation, and a small stroke. “Throughout all of that, I wanted to stay relevant,” he explains of his bike riding and of a financial services business he co-founded with friends from his early days on Wall Street.

Then, after a period in which it was becoming increasingly difficult to get on his bike because of spasticity, the day came when he took a tumble. “I literally fell off my bike because I couldn’t get my feet in the pedals. I was lying in the street, and I couldn’t get up by myself. A car pulled to the curb and the driver came over and picked me up. It was just awful.”

While Mr. Zimits still rides, he realized at that moment that the days of his long-distance sojourns were likely over. Faced with a limitation on his activity in one area, he sought other ways to maintain a rigorous exercise regimen and began weightlifting.

Trust Your Instincts
Cathy Chester was diagnosed with MS in 1986, when she was 27 years old. “There were no approved disease-modifying therapies (DMTs) then, plus no internet to go to and learn more about MS. Also, in those days, the doctors ruled, and they didn’t really want to hear from the patients,” she recalls. “I don’t know if people diagnosed today recognize how much it means to have access to information on MS. They start right out of the gate knowing what they need to do in terms of eating better, exercise, and treatment. I didn’t know any of that,” she adds.

Ms. Chester filled that void by educating herself about MS and then going on to educate and advocate for others with the disease. Today, that advocacy includes publishing her blog, An Empowered Spirit, which provides readers with insights and guidance on living with MS.

Drawing on her own experience and all that she has learned in helping others, Ms. Chester says that one key to aging well with MS is to have confidence in yourself and to speak up when you have concerns. “Trust your instincts if something you’re being told doesn’t feel right. Don’t ignore that instinct.”

How MS Affects Age-Related Declines in Physical Health

This is an article about aging well with MS, about the strategies and solutions, approaches and attitudes, which can enable people with MS to optimize their health and quality of life as they grow older. The good news, as detailed below, is that there is a great deal that people with MS can do now to enhance how they experience the years ahead. Before turning to those strategies for future wellbeing, however, it’s important to understand just how profound an impact MS can have on age-related changes in health. A study published in the journal Multiple Sclerosis earlier this year quantified that impact in compelling fashion.1

The study was conducted by Marianna Cortese, MD, PhD, a research scientist at the Harvard T.H. Chan School of Public Health and her colleagues from other Harvard institutions and affiliated hospitals. They drew on 25 years’ worth of data from more than 200,000 participants in the Nurses’ Health Study and Nurses’ Health Study II to examine how 733 women with MS compared with their unaffected peers in terms of several indicators of physical and mental health as well as memory, to assess the burden of aging with MS.

The main finding of the study, Dr. Cortese explains, was that “the age-related decline in physical health is accelerated by 15-30 years in women aging with MS compared to peers unaffected by MS. Women with MS declined three to four times faster in their physical function in midlife, while the decline was more similar in older age.”

As explained by Dr. Cortese, the study found that a middle-aged woman with MS had physical-function scores comparable to that of a more senior woman without MS. The difference seems to become less pronounced in old age: Women with MS start declining in their physical function earlier in life compared to women without MS, who more likely start experiencing physical decline at a similar pace in older age; therefore the gap seems to start narrowing in seniors. Additionally, as one might suspect, women with progressive MS had physical function scores that were significantly lower than those with relapsing forms of MS.1

As a neuroepidemiologist who earned her PhD studying risk factors and early signs of MS, Dr. Cortese is well-acquainted with the toll MS can take on individuals. Nevertheless, she says, “It was striking to quantify the aging burden and gap between women aging with MS and those aging without MS throughout the lifespan. The comparison made the difference more concrete and draws more attention to this important topic.” Dr. Cortese adds that despite the importance of understanding how people age with MS, it is a subject that historically has been under-studied.

“Moving the Median” One Person at a Time

MSAA Chief Medical Officer Barry Hendin, MD, says that while the finding that a middle-aged woman with MS has physical-function scores comparable to those of a senior woman without MS is disheartening, people can draw encouragement from the progress made in reducing a different gap that once prevailed in MS.

“When I started practicing in the early 1970s, and for many years thereafter, the conventional wisdom was that MS reduced a person’s life expectancy by as much as 10 years,” the MS specialist from Phoenix, Arizona recalls. Today, he adds, the gap in life expectancy between people with MS and people of the same age who are unaffected by the disease is thought to be seven years or less – and continues to decline, which is good news for people with MS.

A Norwegian study that followed 1,388 people with MS over the course of many decades found that the median life expectancy for people with MS was 74.7 years vs. 81.8 years for the general population. Women with MS fared better than their male counterparts, with a median lifespan of 77.2 years vs. 72.2 for men. People with relapsing-remitting MS had a median life expectancy of 77.8 years, compared to 71.4 years for those with primary-progressive MS.2

While one’s eye naturally goes to the numbers in any discussion of life expectancy, Dr. Hendin counsels that the word “median” deserves as much, if not more, attention. He explains that the median is the number situated in the middle of a group of numbers, in this case, the lifespans of the people with MS studied by the Norwegian researchers.

“On one side of that median, you have – unfortunately – people who have a shorter life expectancy because they have a significant degree of disability. On the other side, you have people who can expect to live longer because they have less disability and are in better health generally. To the extent that people are able to avoid, minimize, or slow their MS-related disability and maintain good overall health, they can put themselves on the favorable side of the median, while pushing that median upward for all involved. And the good news is that people with MS have a greater ability to enhance their health than ever before,” Dr. Hendin says.

Seeking Answers, Staying Proactive

Stuart Schlossman returned home focused on his plans for the rest of the day. As he turned off his car and prepared to go inside, however, his thoughts were interrupted by a nagging question: What was that bag from CVS doing on the passenger seat?

Was his temporary forgetfulness about going to CVS a “senior moment” not uncommon to people, like him, in their early 60’s, or was it a sign of cognitive decline not uncommon to people, also like him, with multiple sclerosis?

From personal experience and his work as the founder and president of MS Views and News, Mr. Schlossman is thoroughly conversant with the ways MS can manifest itself. Nonetheless, the momentary mystery of where the bag originated from bothered him. “It’s scary,” he said of the cognitive miscue. “Was it the MS, was it age, was it a combination of the two, or even something else entirely?”

Realizing that he would not be able to determine on his own whether his memory lapse was attributable to aging, MS, a combination of the two, or another cause, Mr. Schlossman decided to be proactive. He made an appointment with his doctor, shared his concerns, and came away with a plan to address any cognitive issues.

“The bottom line is, if you have something going on with yourself, get it checked out,” Mr. Schlossman says, adding, “You have to be your own best advocate.”

Dr. Hendin concurs, noting that open communication between clinicians and patients in a mutually respectful relationship is critical to identifying and addressing the challenges that accompany aging with MS. He explains that the dramatic strides in MS care made possible by the availability of DMTs have been accompanied by two less-noticed but also important advances – the rise of shared decision-making between clinician and patient and the provision of integrated, comprehensive care in which a team of specialists attends to the full range of a person’s health needs.

“I completed my neurology residency in 1972. That was 21 years before the first disease-modifying therapy was approved by the FDA. Clinicians had a lot of complacency in those days. They said, ‘There’s not much we can do for people with MS.’ The situation today is dramatically improved. There’s so much we can do for patients, and so much they can do for themselves.”

Twins Who Share a Special Bond

Tamara and Terry Hord

Terry Hord says that doing as much as a person reasonably can for themselves is a fundamental strategy for maintaining independence, a positive attitude, and physical function. “Always remember that you’re still in control of your choices. As you age, don’t fall into that trap of letting others – no matter how well-intentioned they are – tell you what you can and cannot do.”

Ms. Hord speaks from the perspective of someone who has lived with a diagnosis of MS for half of her 54 years, and who has made use of a motorized wheelchair for the last three years. “Don’t be scared to age, there’s so much good we can enjoy in these years, and so much good we can do.”

For Terry Hord (left) and her identical twin, Tamara Kahn (right), doing good includes operating their TwinsCoast2Coast website, recording podcasts, maintaining an active Instagram presence, and in other ways sharing their experience of both living with MS. (Ms. Kahn was diagnosed in 1998, three years after her sister’s diagnosis.)

As noted in the sidebar above featuring identical twins Ms. Hord and Ms. Kahn, sharing one’s experience of living with MS is a good way to help others. Mr. Schlossman explains that helping others can also be a powerful form of self-help. He notes that he regularly encounters individuals experiencing depression because MS has forced them to leave the jobs that gave them a sense of value and purpose.

“I understand where they’re coming from. I’m the guy who was working when I was 12. I love to work, and I will work until the day I pass. But sometimes you have to adapt what you do. So I recommend that people who can’t work in a full-time paid job, volunteer for something that works for them and their current situation. It doesn’t have to be MS-related. There are plenty of needs out there, and helping other people makes you feel empowered. Knowing that you’re bringing joy to someone else brings you joy,” he says.

Ms. Chester agrees, emphasizing that older people have a great deal to offer others. “We add value to the world. We bring knowledge, we bring experience. We have a yearning to help, and to add value for others every single day.”

At the same time, Mr. Schlossman adds, people have to focus on themselves, as well. “You have to keep pushing yourself. A lot of people are waiting for other people to do something. So do whatever you can for yourself, even if it’s just a little more than you did the day before. You’ll feel better.”

Mr. Zimits shares that philosophy, which he sums up with the phrase, “Choose your hard.”

He explains, “Having MS is hard no matter what you do or don’t do. It’s hard if you sit back and let it take its course without doing what you can to reduce its impact and maintain your health. It’s also hard even if you do exercise and eat well and maintain a positive attitude, but which approach gives you a better life? On our trip to Disneyland, it was hard to park my pride and my ego at the door and ask for that scooter, but it was also hard to walk. In those situations, and in our lives, we need to ‘choose our hard.’”

What You Can Do

Dealing with the challenges posed by MS can take an incredible amount of time, energy, and effort, sometimes seeming to leave little left over for attending to “the rest” of your health. Dr. Hendin and the patient advocates interviewed for this article caution that this view, while understandable, can have negative consequences not only for a person’s general wellbeing, but also in terms of MS symptoms and disease course.

“It is erroneous to think that there is a template for health in MS that is exclusive of overall health,” says Dr. Hendin.

He adds that people with MS need to adopt healthy behaviors that are important for all people, but that take on greater significance in the setting of a chronic, neurodegenerative disease. “That starts with avoiding tobacco and excessive alcohol, exercising in a manner appropriate to your situation, eating a heathy diet, obtaining adequate sleep, addressing any other health conditions you may have, paying attention to your emotional and mental health, and maintaining social connections,” he says.

Ms. Chester says, “It’s so important to have a good medical team, one that includes your neurologist and primary care provider, of course, but a physical therapist is also really key for so many people with MS, and having an occupational therapist may also be important.” In addition, she says, specialists treating other conditions that a person might have – such as a cardiologist for heart issues or an endocrinologist for diabetes or thyroid disease – should not only be aware that you have MS, but should also have an understanding of how MS and the medications used to treat it may affect the disease they are managing, and vice versa. She adds that a physician’s hospital affiliations are a key consideration, as the quality of the hospital can have a major impact on any inpatient care you may need.

“Make sure that they’re listening to you and really processing what you’re saying, and that they’re staying on top of things,” she adds of the clinicians.

To make the most of her medical visits, Ms. Chester keeps a running list of questions she wants to ask and information she wants to share when she sees a clinician. She also has her husband (who was her boyfriend at the time of her diagnosis in 1986) accompany her to appointments whenever possible. “He’s a huge help because there can be so much to remember,” she says in advising all people with MS to have a relative or friend join them and serve as a second set of ears at doctor visits.

Ms. Chester also keeps a schedule of all her upcoming appointments and recommended health screenings.

“Bone densitometry tests are very important for women with MS as they get older because of the risk of falls and bone fractures, and, of course, mammograms and Ob/Gyn visits are essential for all women,” Ms. Chester says. She adds that regular dental check-ups, while easy to neglect, are key not only in terms of oral health but because gum disease can affect overall wellbeing, including in terms of inflammation.

In addition, Ms. Chester sees a gastro-enterologist for a condition called small intestine bacterial overgrowth. “A significant proportion of people with MS have gastrointestinal issues,” she says, adding that whatever the condition, and regardless of whether or not it is considered related to MS, finding and regularly seeing appropriate specialists in addition to the neurologist are essential.

“Attention to ‘comorbidities,’ or other health conditions that a person is experiencing in addition to MS, is critical,” Dr. Hendin stresses. Research has shown that comorbidities reduce the quality of life and increase the risk of death for people with MS.3,4

Compared to people of the same age who do not have MS, individuals living with MS are more likely to have cardiovascular disease, diabetes, mental health issues such as depression, and other serious conditions.5

A study that drew on healthcare claims data on more than 23,000 people with MS6 found that during the course of an eight-year period, the three most common comorbid conditions experienced were:

• high blood pressure (25.9% to 29.7% of study subjects)
• gastrointestinal disease (18.4% to 21.4%)
• thyroid disease (12.9% to 17.1%)

Five to 10% of the people with MS included in the analysis had chronic lung disease, arthritis, anxiety, depression, or diabetes.6

Erectile dysfunction and other sexual health problems are also common in people with MS, but too often are not treated because people are reluctant to discuss those issues with their clinicians, Mr. Schlossman says. “I’m an open book, and I want people to know they’re not alone, so I’m comfortable speaking about these things, but many people aren’t. I’m 63, and I have had problems for a long time, including an MS-related loss of tactile sensation that affects sexual activity,” he explains. He adds that talking openly with a clinician may help identify solutions that can enable more people to maintain their sex life as they grow older.

The hot flashes of menopause can also be a real challenge for people with MS, who often are sensitive to heat, notes Ms. Kahn. “Hormone therapies that are used to treat menopausal symptoms carry risks as well as benefits, but it can be worthwhile to talk with your doctor about those treatments or other approaches,” she adds.

Exercise is Medicine

When Ms. Chester was diagnosed with MS, her neurologist’s list of what she should and should not do included a warning against exercise. “I was told it would make me sweat and cause exacerbations,” Ms. Chester recalls of the conversation, which took place 36 years ago.

She opted to instead exercise her independence as well as her body and has engaged in yoga, stretching, and other forms of exercise ever since. “As you age, your body really requires you to do more stretching, more exercise, more activity,” says Ms. Chester. She has maintained that commitment to exercise in the face of MS progression, adapting her routines to meet and hopefully maintain her current level of functionality. “I used to do intermediate yoga, now I do chair yoga. Our bodies are going to age whether we have MS or not, but there are always things you can do.”

Ms. Kahn couldn’t agree more. As a girl growing up in Florida, she played tennis, rode horses, and enjoyed other sports with her identical twin, Ms. Hord. As a young woman, Ms. Kahn led a very active and fulfilling life. And when she was diagnosed with MS at age 30, she was determined to remain active.

Today, even though Ms. Kahn makes use of a wheelchair, as does her twin, she makes exercise a part of every day. “Sometimes I wake up in the morning, and I can’t move at first and I feel much older than I am, but I just get those muscles going and I keep them going.” She adds, “Keep yourself in the best shape you possibly can. If you’re in a wheelchair, exercise your upper body – it will make you feel better.”

Ms. Kahn’s advice squares with the findings of research conducted by Rachel E. Bollaert, PhD, and others. A clinical assistant professor of exercise science at Marquette University in Milwaukee, Wisconsin, Dr. Bollaert earned her PhD in kinesiology and community health at the University of Illinois at Urbana-Champaign, where she studied and worked with an internationally recognized leader in the field of exercise in MS, Robert W. Motl, PhD. Since then, often in conjunction with Dr. Motl and sometimes in collaboration with other colleagues, Dr. Bollaert has done extensive research into the benefit of exercise for people with MS.

“One of the main things we’ve found in examining the impact of physical activity is that it can confer psychological as well as physical benefits, including an improved sense of self-efficacy,” Dr. Bollaert notes. She adds that research also indicates that there is at least an association between physical activity and improved cognitive function, but that further studies are needed to determine whether this constitutes cause-and-effect.

Meanwhile, Dr. Bollaert says that several trends have combined in recent years to facilitate exercise in people with MS. She explains that those trends include the development of specialized equipment that enable people with balance problems or other impairments to exercise safely without fear of falling. The trends also include the fact that the number of exercise physiologists who are knowledgeable about MS and its treatment are increasing, along with the issuance in 2020 of exercise and lifestyle physical activity recommendations for people with MS that offer guidance throughout the disease course.7

Despite those advances, Dr. Bollaert says, much more needs to be done. “People with MS want information about physical activity, and they’re not sure where to obtain it. The main question I’m asked is, ‘I’ve heard about the benefits of physical activity, but how do I start to exercise or increase my exercise without exacerbating my fatigue or risk falling?’”

Dr. Bollaert recommends that people with MS contact a neurological physical therapist or an exercise physiologist with experience in MS to develop an individualized plan. She adds that neurologists and other clinicians caring for people with MS should make a practice of regularly asking their patients about exercise and offering guidance.

“Exercise is medicine, and assessing exercise is taking a vital sign,” she says.
In terms of her own guidance for people with MS, Dr. Bollaert says, “Engage in physical activity that matches your lifestyle and your capabilities. Going to the gym can be a scary prospect, but remember that your physical activity can be gardening, or parking further away than usual in the supermarket parking lot and getting in those extra steps. A little bit of movement or physical activity is far better than none.” The flip side of that coin she adds, is for people to reduce the amount of time they are sedentary by making small changes in their daily routines. “If you like to watch TV, get up and walk around during the commercials,” she advises.

Looking Ahead with Hope

While the Norwegian study (discussed earlier) provides some median life-expectancy figures,2 no one – whether they have MS or not – can know their own life expectancy. Ms. Kahn says that’s all the more reason to live life to the fullest today.

She explains that this is a lesson she and her twin, Ms. Hord, learned long before their own diagnoses of MS. “Our mom was diagnosed with cancer at 33 and died at 44, when we were just young women. In a sense, that prepared us for this crazy MS experience. You’re given one deck of cards in life, so you have to make the most of what you’re dealt.”

Making the most of what your dealt also requires “thinking about the things you don’t want to think about,” says Ms. Chester. She explains that this includes preparing documents such as wills and medical directives, considering what living arrangements may be needed in the future, and engaging in sound financial planning. (For more information, please see “Planning for Future Care” from the Summer/Fall 2021 issue of The Motivator.

Mr. Schlossman agrees, noting that finances are the biggest concern many people with MS have about aging. “They’re worried about whether they will be able to take care of themselves, particularly if they don’t have family around.” He adds that whatever the issue – be it financial, cognitive (another common area of concern), physical, social, or emotional – it’s better to speak up and seek help rather than wait and worry.

There is abundant reason to expect that the advances in treating MS that have revolutionized care in the past few decades will only continue, Dr. Hendin says.

And Ms. Kahn notes that the future often proves to be much brighter than one would believe at difficult moments. “If someone had told me at the time at my diagnosis that I would be in an electric wheelchair at age 54, I would have broken down and cried. The idea of needing a wheelchair would have been horrifying. Today, I use my power chair every day. I am so thankful that I have one. I’m the same person, just on wheels.”

While most people with MS dread the prospect of taking a fall, Ms. Kahn is actually looking forward to one – and even planning the event. “I’m going to do an accompanied jump out of an airplane later this year,” she explains.

And her sister, Ms. Hord, will be waiting on the ground, cheering her on, just as everyone with MS needs and deserves someone to support them as they make a leap of faith into the years ahead.

Please look for Part Two of this informative article on “Aging Well with MS” in our Winter/Spring 2023 issue of The Motivator. This second portion of the two-part series will include valuable scientific and clinical information on aging with MS.


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