I have a rare mutation called IBMPFD or VCP disease. At age 73, I am the 2nd oldest known survivor of the ~500 known to exist in the world.
Currently the prognosis is "no treatment, no cure, no hope". One typically dies from a heart attack or pneumonia, not directly from the mutation. Both of my younger sisters and my first cousin with the mutation died at age 65.
Life style does make a difference. Some suggestions and clinical papers are available at www.ibmpfd.info. Diet and maintaining the correct (lower than standard) weight is very important. Vitamins & supplements may help. As the metabolism slows, staying warm may be a burden on your caregiver.
If you want to contact others with this mutation or donate for research, go to the Cure VCP Foundation at https://www.curevcp.org/
My status is, with devoted attention from my wife, that I am on a ventilator 24/7, I require a Hoyer lift to transfer me to/from my standing power wheelchair (Redman) and my hospital bed. I have other problems associated with the mutation and prostate cancer that are not worth detailing.
The most important thing to do is to stay mentally active, i.e., very little TV watching. I have local grade-school boys help me with various projects 1-2 days/week. Otherwise, I am using or working with various computers (trackball & virtual keyboard). Writing is slow & difficult, but very important. I have Win-10, XP, 98, 95, & DOS computers, although some need additional repairs. We have others doing various projects on the house or property. These keep me mentally, if not physically, active.