By Cherie C. Binns RN MSCN
This year at the Consortium of Multiple Sclerosis
Centers (CMSC) Annual Meeting, there was a greater focus on aging in the MS
population than I think I have ever seen in my 16 years as a member of that organization. There were a number of themes that emerged.
1.
Lifespan of People with Multiple
Sclerosis (PWMS) is only slightly shorter than those in the general population.
2.
PWMS on disease modifying therapies
(DMTs) tend to move more slowly towards secondary progressive MS (SPMS) from
Relapsing Remitting MS (RRMS) than they did thirty years ago when there were no
DMTs.
3.
Lifestyle changes can significantly
impact the quality of life and longevity of PWMS.
4.
Some PWMS 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 PWMS 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 5-year gap in expectancy
between men and women with MS? One
presenter cited a couple of observations that he had made in his practice. He said that 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 PWMS have a shorter life span than those
without? What is it about MS that
shortens life? There were 2 causes of
death in the MS population that are predominant. 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 that only 1 in
about 5 people that 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 due to 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 US today has at
least 2 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 impact of
lifestyle choices in older PWMS. Those
who get regular exercise, don’t smoke, 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 that 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 co-morbidities
(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 that 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 5
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 3 or 4 times a year rather than 1 or 2
and are having MRIs every 6 months for up to2 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.
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