Inclusion Body Myositis (IBM) Lifestyle Options : Johns Hopkins Myositis Center

Inclusion Body Myositis (IBM) Lifestyle Options : Johns Hopkins Myositis Center


(soft music) – So I think inclusion
body myositis impacts not only the person but
the loved ones around them. And so I’ve often seen relationships
grow and sometimes not. So depending on those that you love becomes an important part
of your long term health. The lifestyle modifications
are probably one of the most important parts of this strategy
to live well with myositis because there is currently
no long term option for pharmacologic or drug therapy today. So a patient should be very
aware of their surroundings with regards to potential for fall. Minimizing, for example,
changes in terrain, from carpet to a hardwood floor can be a simple fix to
just be very careful and anticipate trying to
minimize their chance of falling. Watching their food choices and being careful in that regard
to any swallowing problems. I think it becomes a
strategy to be anticipatory rather than reactionary. In other words, anticipating
if they should need to go out to an event for possible issues regarding stair climbing, etc. So planning ahead, making
sure someone is there for assistance if needed, or being able to strategize trying to avoid stairs or any obstacles that might make it more
difficult for them to navigate going out for example. And then finally, maintaining
an active lifestyle every day. I think that the thought is
when one has a muscle disease, maybe perhaps resting the
muscles would be important and in fact that’s the old paradigm. We used to say, as soon
as you were effected, and your muscle enzymes were elevated, that must mean you should rest, in fact the opposite is true. In our experience, the
patients that do the best seem to be those that exercise
daily and consistently, and that includes the upper body and the lower body on a daily basis. Enlisting the help of
your spouse or partner or sibling or someone close
to you in that effort, keeping you accountable is
probably one of the best strategies for maintaining
regular exercise and extending the longevity of your muscle as long as possible. I think the best strategy
for caregiver education are our partners like
the myositis association and patient advocacy groups, they are present on a national level and local levels. And I think finding folks who have and share the same story probably provide some of the best benefits for feeling like you’re not alone. And I think recognizing and
going head on into the illness and it’s long trajectory, likely years with this illness, in a slow fashion is important to discuss with those you care about. (soft music) The other things that
we ask patients to do are maintain a healthy diet, a good amount of protein sources, and there are some vitamins
that some people recommend, however I always tell the patient that certainly you can try them and probably the only risk
to you is to your wallet. So because the studies are really small and not necessarily conclusion, while there is likely
no harm in trying them you may in fact be paying out of pocket to try a vitamin source that
may not in the end be helpful. The other thought is creatine, which is a muscle supplement
to help with muscle bulk. Again, limited data but some
patients do find this helpful and once again we find little to no harm, there just may be no long term benefit. I always tell patients to give it a two to three month trial on average and if it doesn’t work
after that to stop it. (soft music)

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