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Hi!

I was diagnosed with FSH in 2000 after many years of anxious waiting while doctors tried to figure out what was wrong. There was a lot of "wait until more symptoms manifest," and even more puzzled looks. I was finally diagnosed with sporatic late-onset fshd with perineal involvement. I have a sub-set of the disease where my face is hardly affected, if at all. I certainly do have it in my shoulders and upper arms, my lower back, gluts, abs and core, and quads. I do have the gait, the limp, and the foot drop in my right foot. I am fortunate in that I have not progressed very far, and I don't seem to be progressing at all right now.

I see Dr. Sharon Nations and Dr. Gil Wolfe at the U of Texas Med Center in Dallas. They are wonderful people. At my last appt., I was told that since I was healthy in ever other area, I had carte blanche to try alternatives. I was to report back to them if I found ANYTHING that improved the quality of my life or seemed to slow the progression.

A couple of years ago I met someone online that told me about a program called "The Incurables Program" by a natural health doctor named Dr. Richard Schulze . I tucked that info in the back of my mind while I tried creatine and vitamins, and read everything I could get my hands on about FSH (you know there's not much), muscular dystrophy in general (you know FSHD works differently than the others), nutrition, muscle building (which usually centered around weight lifting), stem cell research, gene therapy, and the like. Like you, I have been appauled by the lack of funding for this, the third most common dystrophy, but encouraged by the fairly recent Congressional approval of funding for research specific to FSH.

Finally I researched The Incurables Program (IP), because Dr. Schulze , although banned from practicing, said he saw patients heal themselves of every known disease. His teacher, the late Dr. Christopher, mentions in his literature healing people with muscular dystrophy.

I decided to be a guinea pig for IP. If this program did work, people affected with FSH needed to know about it. I needed to try it for them, for my seven children who have a 50% chance of inheriting the disease, for my loved ones who have to see me go through what I go through every day, and certainly, for me. If the program did not work, then we would all know that there were no incurable diseases (one of Dr. Schulze 's mantras) except one.

On June 17, 2004, I took the plunge and began the Incurables Program. I posted a daily journal here on Curezone on the Dr. Schulze Forum . I had tons of virtual support from people on that forum, and in real life from my sweet husband John, who became my Healing Partner, as well as family and friends.

I will post all of the links to my journey here for your information and reading pleasure (or ZZZZZZZ LOL). Most of them are quite long- I like to write. I think I made remarkable progress. If I had stayed on the program longer, I think I would have seen my doctors to see if they could measure any improvement.

I am going to do the IP again, starting in October. I will again chart what I eat, my exercise progress, changes in mood, and any improvement in my health that I notice. I will do the IP a little differently this time, since I have gotten info from several herbalists who have used IP on themselves or on clients with success. This time, if I notice improvement, I WILL set up an appt. to see my good doctors, and let them take it from there.

This forum will be the place to discuss this or any other alternative that seems to be working for fellow "sufferers" of FSH. Also, I hope to offer support to others who have this crazy disease. Now, I will warn you. I strongly dislike the words sufferers, victims, or any other whiney, poor me words. I know the pain, I know the frustration, I know the lack of physical ability, I know the emotional challenges. I personally believe there IS a cure for FSHD, we just haven't found it. I will also warn you that I am a strong, believing Christian, and give glory to God in all things. All faiths are welcome here, I just want you to know up front where I'm at.

I have to thank Bob Manz, a very cool herbalist here on Curezone, for opening this forum to us. You should visit his very informative website at www.bobmanz.com. He healed himself from Chronic-Fatigue-Syndrome (chronic fatigue syndrome), which is also said to be incurable. Hah! Folks, there are no incurable diseases, and there is hope.

Many blessings as you seek healing,
-Donna Pravel (dp9)


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