Regular exercise is particularly important to those affected with IBMPFD.  Of course, exercise makes you feel good anyway, but can have significant preventive benefits, as well as slow the degeneration once started.

One theory is that by exercising you can convert some of your type IIB (disease more susceptible) into type IIA (disease less susceptible). Thereby potentially protecting the muscle. This will be dependent on the fiber type ratios of each muscle group.  This does NOT mean that the exercise has to be extreme strength training – any exercise within your limits an within reason MAY be of benefit.

Prior to major visible signs, whole body exercises, e.g., swimming, basketball, not only improve your general health, but may slow the onset.

I find now that regular exercise is very important.  One should be moving every few hours, i.e., may sure even when sitting to get up and walk about every so often.  Similarly, when up and doing things, make sure to get plenty of rest periods.

Exercises should concentrate on stretching, rather than strength building; flexibility during falls is more important to minimize injury than the trying to achieve the unobtainable strength to prevent the fall.  Short duration repetitive stretches or lifts help.  I do most of my stretching and lifting (3 pound weights for now) while in the therapy pool.  There are also leg stretches, especially for the hamstring, that can be done while lying in bed.  These are important to do regularly to maintain flexibility in one's legs, which will lengthen the time one can walk.

There are breathing exercises, e.g., pull the abdomen in while breathing, that helps with digestion issues (and retarding girth increases).

Walking and moving things (e.g., empty the dish washer, use a tool) a little bit each day is better than trying to do a lot on one day and very little the next.

The following link is to a summary I wrote about some of my experiences with the loss of muscle control and how to mitigate some of the effects (Muscle Control).