Cherie C. Binns RN BS MSCN
1. Lifespan of people with multiple sclerosis is only slightly shorter than those in the general population.2. People with MS on disease-modifying therapies tend to move more slowly towards secondary progressive MS from relapsing remitting MS than they did thirty years ago when there were no DMTs.3. Lifestyle changes can significantly affect the quality of life and longevity of people with MS.4. Some people with MS may be able to discontinue their DMT if their disease has been stable for several years and they have no new disease activity.I read a book that was printed in 1975 about the natural course of MS and it said that the life expectancy of people with MS was about 58 years. Now the average lifespan at that point in time was right around 70 years of age. DMTs did not become available (except in clinical trials) until 1993. This year at CMSC we heard that men with MS had a life expectancy of about 68 while women were expected to live to 73 and the average life expectancy in the general population was 78. Why is there a five-year gap in expectancy between men and women with MS? One presenter cited a couple of observations he had made in his practice. He said men with MS who die younger generally are smokers. They also often have gone off DMTs because they have not found one that they like or feel they are not working whereas women are less likely to smoke and more likely to be consistent with taking a DMT.
Why do people with MS have a shorter life span than those without? What is it about MS that shortens life? There were two predominant causes of death in the MS population. These were infection (urinary tract, pneumonia and wound infection led the list) and falls. Both of these causes of death or injury rise significantly the less mobile a person becomes. Those using ambulatory aids are at greater risk if they do not use the correct level of walking support. One physical therapist said only one in about five people she sees using a cane should be using one. Most actually need a walker or rollator. Many falls take place during transfers when an individual tries to move from a scooter or chair to the bed or toilet unassisted. That said, it is an essential part of your MS care plan to have a physical therapy evaluation at least once a year if there are any problems with walking independently.As far as infections go, pneumonias and wound infections from pressure ulcers are considerably higher in persons who are either bed-bound or inactive all day. Urinary tract infections can often go unnoticed in individuals with MS because of decreased sensation and may seemingly go from a bit uncomfortable to potentially life-threatening in a very short period of time.The average adult over age 65 in the U.S. today has at least two chronic illnesses. The most common of these are obesity, high blood pressure, diabetes, and COPD or asthma. People with MS have the same risks for these conditions as well as having MS.We heard a lot this year at CMSC about the effect of lifestyle choices in older people with MS. Those who get regular exercise, don’t smoke, and eat a healthy well-balanced diet free of processed foods and added sugars are living healthy longer lives. Those who volunteer in their communities, are in relationships they find fulfilling, and have a faith-based community with which they can connect do better. The more active an individual is, the less likely they are to become chair- or bed-bound and those who are in a chair or bed who get some form or regular exercise and have well managed comorbidities (other chronic conditions) do better and live longer than their counterparts who are sedentary and do not get some form of exercise and are not well managed with their other conditions.Remember that book that I referenced that was written in 1975? It said most people with RRMS transitioned to SPMS within about 10 years of the onset of the disease. Today, people that are on a DMT may still not have transitioned after 25 or more years! That said, for many of us, the disease process may slow after the age of 55 or 60. This is not the case for everyone but for someone who has had no relapses, no changes on their MRI, and has not progressed in disability in a five-year period prior to turning 55 or 60 may safely be able to stop their disease-modifying therapy. I’ve spoken to a number of practitioners in MS centers about this in the past couple of years and most will allow that as long as they follow the individual closely for a couple of years afterward. Most are seen three or four times a year rather than one or two and are having MRIs every six months for up to two years following stopping just to be sure there is not silent damage taking place.Even if you are a young person with MS, making the mentioned lifestyle changes now will help you live more comfortably and safely and perhaps prevent comorbidities from developing. No matter what age you are now, making these changes can improve and prolong your life.
Cherie will be speaking about this topic, with MS Views and News, Live, on 08.11.21. — To watch this event, please Click HERE to Subscribe for the MS Beacon eNewsletter , so that you get the information to register for the event, when it is time.
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