Wednesday, September 15, 2010

Post 28 - One-Year Anniversary

It’s exactly a year since I traveled to Cologne, Germany and underwent stem cell therapy at the X-Cell Center for Regenerative Medicine. Earlier entries on this blog have described how decisions were made, what the process involved, and what, if any, benefit was obtained. I’ll repeat here I have no regrets I went thru the therapy – either financially or emotionally. I would do it again “in a heartbeat.” Sure I’m disappointed the results weren’t more dramatic or long-lasting, but that may have been due to the low count of stem cells obtainable from my bone marrow. I do think the therapy may have helped me “plateau” for almost a year before further decline.

I also said in an earlier entry that I would speak candidly about my experience with the X-Cell Center. My strongest criticism at this point involves the X-Cell Center’s need to improve their “customer relations,” especially post-treatment. To date, I have received just two messages from X-Cell since the treatment; one was an automated Christmas message, while the other was a simplistic survey seeking my input about any after-effects the treatment may have caused. The survey, unfortunately, was directed to someone suffering from multiple sclerosis – not MSA. I noted this in my return correspondence, which was never acknowledged. X-Cell needs to pay more attention to follow-up patient studies, surveys and research. By doing so, they would help dispel comments alleging they’re just medical opportunists capitalizing on the fears of desperate clients.

Now for another issue I call The Exercise Dilemma. In Post #26, I mentioned my decision to begin an exercise program with the goal of warding off or delaying the muscle atrophy that accompanies MSA. I described the fully-equipped fitness center at our condo and how I would begin a program to keep up my muscle tone and general wellness. The fitness center is equipped with treadmills, stationary bikes, elliptical machines, and the usual array of torturous devices. I chose to begin my efforts with some time on the treadmill, alternating on the stationary bike, and interspersing a few reps each day on the weight bearing machines.

The treadmill went fine, as did the reps on the other machines. I was a little achy and tired afterward, but that was to be expected. What I didn’t expect was my reaction to 15 minutes on the stationary bike a few days later. When I finished and tried to walk to one of the other machines I found my legs had turned to rubber. I could barely stay standing and really needed my walker to make it back to the condo. It’s taken a few days of rest to recover. In the future, I’m going to follow my daughter’s advice and emphasize the weight-bearing machines to slowly build up strength, rather than machines that stress cardio exercise, like the stationary bike. With any luck, I’ll eventually get into shape like Gerry N., my fellow MSA-traveler here in SW Florida, or maybe even like the envy of everyone in New Bern, NC – my former YMCA partner, Gene D.

I’ll be back in a month or so – if the exercise doesn’t do me in first.

1 comment:

  1. Steve...Thank you for taking me on your Germany journey. I'm considering doing the same thing, but I have to get my blood levels better before I go. I received my bad news November 2009 at Stanford University, Parkinson + MSA-S. I was a Deputy Sheriff for 14 years before retiring last December at age 44. Two things that have helped my condition. Levodopa has helped some for my symptoms like balance and tremors. It doesn't work for all MSA patients, but it might be worth a try. Also the University of California at San Diago, has has some good results with CoQ10 at levels around 1200 mg per day. It helps protect brain and neuro cells. Ask your Doctor to research the study. Best Wishes

    Tim S