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How long can you keep working article
Be warned, the article contains study results regarding BENIGN MS.
To all of our analysts - please read this and pass along thoughts.
And, note the definition of benign used, and also study patients were 22+ years dx'd.
How long can you keep working with benign multiple sclerosis?
http://jnnp.bmj.com/content/82/1/78.full.pdf
Objective: To study employment in benign multiple sclerosis (MS), the frequency of employment was
analysed and the effect of early clinical and demographic factors on time to disability pension was evaluated in
a population based MS cohort. The frequency of depression, cognitive function, fatigue and pain between
benign and non-benign MS patients was compared, and their impact on employment in benign MS was studied.
Results: After a mean disease duration of 22.2 years, 32.4% of the cohort were still employed. A relapsingeremitting course, higher educational level and light physical work were significantly associated with
longer time to disability pension in the general MS population. Thirty-nine (65.0%) benign MS patients were
employed, independent of light or heavy physical work. Mild depressive symptoms were markedly associated
with not being employed in benign MS (OR¼7.3).
Conclusions: A relapsingeremitting course, higher educational level and light physical work significantly
predicted longer time to disability pension in the total MS population. Among the benign MS patients, depressive
symptoms, although mild, were strongly associated with not being employed.
To all of our analysts - please read this and pass along thoughts.
And, note the definition of benign used, and also study patients were 22+ years dx'd.
How long can you keep working with benign multiple sclerosis?
http://jnnp.bmj.com/content/82/1/78.full.pdf
Objective: To study employment in benign multiple sclerosis (MS), the frequency of employment was
analysed and the effect of early clinical and demographic factors on time to disability pension was evaluated in
a population based MS cohort. The frequency of depression, cognitive function, fatigue and pain between
benign and non-benign MS patients was compared, and their impact on employment in benign MS was studied.
Results: After a mean disease duration of 22.2 years, 32.4% of the cohort were still employed. A relapsingeremitting course, higher educational level and light physical work were significantly associated with
longer time to disability pension in the general MS population. Thirty-nine (65.0%) benign MS patients were
employed, independent of light or heavy physical work. Mild depressive symptoms were markedly associated
with not being employed in benign MS (OR¼7.3).
Conclusions: A relapsingeremitting course, higher educational level and light physical work significantly
predicted longer time to disability pension in the total MS population. Among the benign MS patients, depressive
symptoms, although mild, were strongly associated with not being employed.
I never got the chance to use my beautician skills after hair school because of my balance. I haven't been able to work at all since the first symptom in school.
I am completely envious of the ones that can still work. I've been fighting for 3 yrs for disability and STILL waiting on an answer from the judge as to whether or not I get it.
I am completely envious of the ones that can still work. I've been fighting for 3 yrs for disability and STILL waiting on an answer from the judge as to whether or not I get it.
All - I'm glad you found it interesting. There is some good info in there.
Sho - excellent interpt -we needed the additional analysis!
Sho - excellent interpt -we needed the additional analysis!
A few thoughts...
There is apparently a lack of consensus around the definition of benign MS, but the definitions are generally based on the EDSS. The higher numbers on the EDSS (4+) are pretty much based on walking/ambulation/mobility. So if you can walk 500 meters, no matter how many problems you have with vision, fatigue, cog fog, depression, etc., your EDSS won't go above 4. There seems to be implicit in the EDSS an assumption that after a certain point worsening in all those other factors is associated with decreased walking ability/mobility. However, even in this article, the authors note that "Studies of general MS populations have found fatigue to be the primary symptom responsible for changes in work status and unemployment."
In this study, they used an EDSS of 3.0 or less, but some researchers have suggested that the cut-off should be as low as 1.5. My EDSS score when I was in a trial vacillated between 3 and 3.5, but I wouldn't be able to keep working if I didn't have both a desk job in an accommodating work environment and support in my life outside of work. None of this research seems to capture those outside support factors (family, friends, money, other resources) nor the impact of how accommodating a workplace is willing to be.
This article found differences between people with EDSS <= 1.5 and <= 3.0. http://www.ncbi.nlm.nih.gov/pubmed/21372114 which suggested that everything about the higher group, such as cognition, isn't quite so benign.
Another article on employment and MS (based on NARCOMS data is at
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3057081/pdf/nihms274228.pdf
"A number of demographic and disease characteristics predicted subsequent loss of employment. Similar to many studies, low educational attainment is associated with increased risk of subsequent work loss, which is generally interpreted in terms of the protective attributes of greater education [8,32]. Specific disease characteristics were also predictive of employment loss, including mobility, hand function, fatigue and perceived cognitive impairment. The impact of hand function on employment likely reflects the universal occupational demands on hands across labor domains. The impact of fatigue on employment is very consistent with other studies [10,11]. The impact of perceived cognitive impairment is also consistent with other studies in MS [9]. While correlations between perceptions of cognitive dysfunction and performance on objective cognitive measures vary [18,23,24], studies of employment in MS that include neuropsychological testing yield very similar findings [3,34,40]. Finally, mobility was predictive of employment loss, which remains consistent with previous work [3,11]."
They suggest that specific rehabilitation or accommodation strategies for these specific limitations could help many people with MS stay employed longer.
"In conclusion, these data suggest that close to 60% of this NARCOMS registry cohort, aged 64 or under at a mean age of 47, are unemployed."
sho
There is apparently a lack of consensus around the definition of benign MS, but the definitions are generally based on the EDSS. The higher numbers on the EDSS (4+) are pretty much based on walking/ambulation/mobility. So if you can walk 500 meters, no matter how many problems you have with vision, fatigue, cog fog, depression, etc., your EDSS won't go above 4. There seems to be implicit in the EDSS an assumption that after a certain point worsening in all those other factors is associated with decreased walking ability/mobility. However, even in this article, the authors note that "Studies of general MS populations have found fatigue to be the primary symptom responsible for changes in work status and unemployment."
In this study, they used an EDSS of 3.0 or less, but some researchers have suggested that the cut-off should be as low as 1.5. My EDSS score when I was in a trial vacillated between 3 and 3.5, but I wouldn't be able to keep working if I didn't have both a desk job in an accommodating work environment and support in my life outside of work. None of this research seems to capture those outside support factors (family, friends, money, other resources) nor the impact of how accommodating a workplace is willing to be.
This article found differences between people with EDSS <= 1.5 and <= 3.0. http://www.ncbi.nlm.nih.gov/pubmed/21372114 which suggested that everything about the higher group, such as cognition, isn't quite so benign.
Another article on employment and MS (based on NARCOMS data is at
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3057081/pdf/nihms274228.pdf
"A number of demographic and disease characteristics predicted subsequent loss of employment. Similar to many studies, low educational attainment is associated with increased risk of subsequent work loss, which is generally interpreted in terms of the protective attributes of greater education [8,32]. Specific disease characteristics were also predictive of employment loss, including mobility, hand function, fatigue and perceived cognitive impairment. The impact of hand function on employment likely reflects the universal occupational demands on hands across labor domains. The impact of fatigue on employment is very consistent with other studies [10,11]. The impact of perceived cognitive impairment is also consistent with other studies in MS [9]. While correlations between perceptions of cognitive dysfunction and performance on objective cognitive measures vary [18,23,24], studies of employment in MS that include neuropsychological testing yield very similar findings [3,34,40]. Finally, mobility was predictive of employment loss, which remains consistent with previous work [3,11]."
They suggest that specific rehabilitation or accommodation strategies for these specific limitations could help many people with MS stay employed longer.
"In conclusion, these data suggest that close to 60% of this NARCOMS registry cohort, aged 64 or under at a mean age of 47, are unemployed."
sho
I'm only 41 and have been unable to work since 12/2009.
I was fired by the firm I'd worked for more than 9 years as soon as my FMLA ran out. Good timing on their part b/c in my State you aren't entitled to worker's comp if you can't work. So much for loyalty. I didn't even get severence.
I was a legal secretary which appears sedentary and easy to do at first glance but I have trouble with weakness pain fatigue muscle and cognitive issues. Not sure if MS or other unspecified neuro/muscular disease to blame. Have fibro but according to docs it's highly atyp and not likely to be alone.
We shouldn't be judged by the fact that we don't look sick or by what we can no longer do. We are what we manage to do inspite of our limitations.
We are compassion and hope for a friend even as we struggle. We have grown b/c of things beyond our control.
We are more, not less.
I was fired by the firm I'd worked for more than 9 years as soon as my FMLA ran out. Good timing on their part b/c in my State you aren't entitled to worker's comp if you can't work. So much for loyalty. I didn't even get severence.
I was a legal secretary which appears sedentary and easy to do at first glance but I have trouble with weakness pain fatigue muscle and cognitive issues. Not sure if MS or other unspecified neuro/muscular disease to blame. Have fibro but according to docs it's highly atyp and not likely to be alone.
We shouldn't be judged by the fact that we don't look sick or by what we can no longer do. We are what we manage to do inspite of our limitations.
We are compassion and hope for a friend even as we struggle. We have grown b/c of things beyond our control.
We are more, not less.
I'm here in Texas - no chance I can go on disability and have anything happen. Hubby and me depend on my insurance, otherwise we're up a creek.
I manage my energy the best I can - I'm lucky I sit at a desk.
I manage my energy the best I can - I'm lucky I sit at a desk.
I just wrote a lengthy reply and hit the wrong key and it got vaporized into wherever those go! I hate it when that happens. So let me try this again.
I am going to assume that this study was done in the UK where benign MS is much more accepted than here in the US. Plus the spelling and language of the study are also clues.
The correlate between education and lasting in the workplace comes from the fact that the more education you have the more likely you will be paid to use your brain rather than your muscles. With the current economy though, I am not so sure that this relationship is still the same. Jobs are harder to come by and the level of education in labor intensive jobs may shift.
It stands to reason that if I have a desk job, I will be able to work longer in a day, a month, and a career than someone who is performing physical labor. I work at a desk and have to do little moving about unless I want to. If I were a teacher, nurse or someone performing manual labor, that would definitely change. I can manage the use of my energy whereas in many other professions you can’t do that.
Depression? Of course we are going to be depressed if we are no longer able to do what we have done in the past, especially if it comes to our employment and contributing financially. I am surprised that this number isn’t higher. Perhaps it is tempered by the age of this group. If the average time since diagnosis is 22+ years, it is quite possible a some of the people in this study have already reached retirement age and left the work force voluntarily.
It is studies like these that make me wish I could be paid for thinking. Thanks, Shell, for giving my brain a workout tonight!
Lulu
I am going to assume that this study was done in the UK where benign MS is much more accepted than here in the US. Plus the spelling and language of the study are also clues.
The correlate between education and lasting in the workplace comes from the fact that the more education you have the more likely you will be paid to use your brain rather than your muscles. With the current economy though, I am not so sure that this relationship is still the same. Jobs are harder to come by and the level of education in labor intensive jobs may shift.
It stands to reason that if I have a desk job, I will be able to work longer in a day, a month, and a career than someone who is performing physical labor. I work at a desk and have to do little moving about unless I want to. If I were a teacher, nurse or someone performing manual labor, that would definitely change. I can manage the use of my energy whereas in many other professions you can’t do that.
Depression? Of course we are going to be depressed if we are no longer able to do what we have done in the past, especially if it comes to our employment and contributing financially. I am surprised that this number isn’t higher. Perhaps it is tempered by the age of this group. If the average time since diagnosis is 22+ years, it is quite possible a some of the people in this study have already reached retirement age and left the work force voluntarily.
It is studies like these that make me wish I could be paid for thinking. Thanks, Shell, for giving my brain a workout tonight!
Lulu
I guess I can be happy I made it over 30 years in the workforce with MS. I went to a talk today with Claire Shipman of ABC News coauthor of Womanomics. I was very sad. It is the first time I have felt so sad about not working. I had probably the closest to Benign MS until the last six months. I basically have to get anything done before noon. My driving is going and I do not have people to drive me even to appointments because my husband has to take off work. I even have to cut down on volunteering for the society. I am only 48 years old.
I am in a real funk these days.I thought with PPMS there would be a gradual decline but one day I just stepped over an edge.
Alex
I am in a real funk these days.I thought with PPMS there would be a gradual decline but one day I just stepped over an edge.
Alex
Interesting. The % still working was lower than I would have thought given their benign status.
I would be interested in knowing how many RRMS, SPMS and PPMS are still working that long after dx.
I would be interested in knowing how many RRMS, SPMS and PPMS are still working that long after dx.
You can say that again - I'll take what they are having :)
We have to extract that definition so we can break it down into palatable pieces!
We have to extract that definition so we can break it down into palatable pieces!
Interesting read, thanks.
Makes me wish I had benign MS (whatever that is...I read the description 3 times and still can't quite grasp it), had a higher education, was younger when dx'd, and was taller and better looking :)
Anyway, keep up the good work finding and posting these studies and articles, I enjoy reading them, even if I have a bit of trouble fully understanding them.
Mike
Makes me wish I had benign MS (whatever that is...I read the description 3 times and still can't quite grasp it), had a higher education, was younger when dx'd, and was taller and better looking :)
Anyway, keep up the good work finding and posting these studies and articles, I enjoy reading them, even if I have a bit of trouble fully understanding them.
Mike
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