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Detour Ahead

It would be difficult to find someone whose life hasn’t been turned upside-down in the past few months.

COVID-19 has left nearly everyone dealing with drastic changes to their daily routine. People around the globe have been asked to self-quarantine, work from home, limit travel to only essential needs, and remain socially distant from friends, loved ones and coworkers.

We’ve altered our normal way of doing things, whether it’s switching gatherings to video calls, limiting our time outside the house, or wearing masks in public. Even kids have had their normal schooling upended for online learning, disconnecting them from teachers and friends, and forcing an odd, unsatisfying end to the school year.

It’s been uncomfortable, it’s been different… and after weeks and even months on end, it’s been tiring, frustrating, isolating and just plain hard.

Dealing with something that’s difficult and unknown isn’t new to people living with MS.

THE MS DETOUR: Changes Ahead

Getting your MS diagnosis is the beginning of a drastic, life-altering series of changes — some big, some small, and some unknown.

In an article written for InforMS back in 2012, Patricia Daily, LCSW, broke the effects of MS down into three distinct areas: Body, Life and Future.

MS is a disease that affects the brain and spinal cord — the body. How severely it affects each person varies widely and unpredictably. The immediate impact MS has on your body can be hard to detect, and may have no physical symptoms at all. But when the disease is active, it’s causing damage that can change your body in many ways. The effects of MS on your body can be aggressive and even disabling, and disruptive to your body’s normal functioning.

Having MS changes your life in unpredictable ways, as well. Often after an attack or exacerbation, the effects on your body will recede or even go away completely. “But even when symptoms are minimal, the problems caused by MS don’t disappear,” wrote Daily. Living with MS can affect your job, your relationships, how you choose to spend your free time… the list of possible life changes is long, and different for everyone.

Perhaps the hardest change to deal with is the unpredictability of your future. We’ve made major strides in treatment, and our ability to slow or even halt disease progress is a long way from where it was years ago. But the fact remains that MS is unpredictable, and that can leave you with a lot of anxiety and even fear about your future.

How Can Your Experience with MS Help Today?

If you’re living with MS, you’ve already experienced a major, life-altering change. Coping with significant alterations to your routine, or changes to your expected path toward the future, likely aren’t new to you.

In 2020, everyone is dealing with such changes, and it’s not difficult to draw some parallels between those collective experiences and an individual’s experience with MS.

We’re all working to keep our body safe from infection, or to get tested and treated if we do get sick. We’re all altering our life in ways that we never could have imagined just a few months ago. And we’ve all got some worry about our future, as we watch statistics and infection rates, navigate how to safely get back to normal, and consider the impact on our jobs and economy.

COVID-19 and MS: What We Know

Thus far, we’ve found that COVID-19 doesn’t seem to pose a higher risk to people living with MS than it does to anyone else.

With a few months of data from the RMMSC at University of Colorado, as well as other MS organization around the world, we know that MS patients aren’t contracting COVID-19 at significantly different rates than the general population.

In patients treated with immunosuppressing medications — including many commonly used in MS treatment — outcomes so far appear to be the same as for other patients. Data from registries is similar so far, and RMMSC doctors have submitted a grant with colleagues in New York to study this in a more broad fashion.

We do know that your risk for contracting COVID-19, and for having a more severe case of the disease, is increased by having other conditions including: cardiovascular disease (heart failure, uncontrolled hypertension); chronic respiratory issues (chronic obstructive pulmonary disease [COPD], asthma, smoking/vaping); cancer; diabetes; chronic kidney disease; and chronic liver disease. Risk is also increased with age, particularly for people over 65, those with severe limitations in mobility or who are bed-bound, and those who are severely obese.

Despite the work done by medical professionals and researchers around the world in the past six months, we still don’t know everything we’d like to know about it. Much like MS, it seems to affect people in very different ways — some get through their infection without much trouble, but others suffer acute illness, and damage to multiple bodily systems. Many people end up on respirators or in intensive care units, and by mid-June the disease has caused well over 100,000 deaths in the United States alone.

When the Coronavirus crisis started, doctors at the RMMSC at CU advised some patients on certain drugs to delay their next doses — today we know that’s not necessary, and the most current advice at the time of this publication is that infusions should go on as scheduled.

Of course, all situations are different, and decisions regarding your treatment should always be made with the advice of your own physician and neurology team.

As we begin to get back to normal — with businesses opening and social distancing recommendations loosening — we don’t know exactly how the spread of infections will continue. Therefore, despite the relatively good news for people with MS, it should still be taken very seriously.

Some people have been able to get antibody tests to determine if they’ve been exposed to the SARS-CoV-2 (the virus responsible for COVID-19). At present, there’s wide variation among such tests (some are very good, others likely not very good). If a test is positive, it’s not known if these antibodies actually neutralize or stop the virus, or how long the antibodies may remain present and active. Thus, it’s important to keep taking precautions against infection.

Where Do We  Go From Here?

The bottom line is that the COVID-19 crisis isn’t over yet.

At the time of this publication, infection rates in some places seem to be trending generally downward, but there is rising activity in other areas. It’s still very important to take practical, reasonable precautions to protect yourself and your loved ones.

As restrictions are gradually lifted and we get back to “normal,” continuing some of the basic practices most of us have adopted — wear face coverings in public, wash hands frequently, maintain social distancing, avoid large gatherings — remain the best ways to reduce your chance of infection.

Most of all, understand that your MS isn’t “on hold” just because we’re dealing with a pandemic — keep up with your treatment, take care of your physical and mental health, and contact your neurology team if you have any questions or concerns, or if you need medical advice for your particular situation.

This issue is dedicated to dealing with detours — not just the effects of the COVID-19 crisis, but any significant disruption to your daily life. Reading on, you’ll find information on stress and mental health, advice on building and maintaining healthy habits, and a primer on Telehealth as we grow into an era where “virtual visits” become more common.

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