A new blood test last week shows my CPK level has dropped from 316 in August to 137! This time I did not exercise at all three days prior to testing. I wanted a "resting" cpk number, and think my higher level in August was due to having exercised less than 48 hours before testing.
My routine remains mostly the same. I exercise 5-6 times a week for 1-2 hours each time. Exercises include stretching, glute exercises, sit ups, arm work and "clam shells" leg exercises. I then ride my exercycle 30-40 minutes at level 5, warming up first at level 4 for about five minutes. I still see my physical therapist once a week, usually to work on upper body strength at this point.
Standing remains a problem, and I recently pulled something in my side near a kidney, making standing a bit painful. My PT thinks we can work on something that will help, so I am looking forward to that later this week.
Overall, I still believe I am seeing improvements. Maybe nothing "earth-shattering" to many, but from where I've been sitting (or falling!) for many years the improvements are significant. My energy is way up; I'm exercising without pain or discomfort for an extended period of time without becoming exhausted; I fall far less often than I did before s/c treatment and I've seen an increase in the mass of my legs.