Edited

I was diagnosed with FSHD in 2001. Since it is a genetic disease, I don't know if it can be cured by ANY means. But I would like to try.

Let's see what we know about FSHD. From the FSH Society website
http://www.fshsociety.org:


"Muscular dystrophy in general connotes a genetic, hereditary muscle disease that causes progressive muscle weakness. FSHD is also broadly characterized as a neuromuscular disease (NMD), as muscular dystrophy is a subset of NMD. Muscular dystrophies are alike in that they cause progressive skeletal muscle weakness, defects in the biochemical, physical and structural components of muscle, and the death of muscle cells and tissue. However, researchers believe that the causes of each of the muscular dystrophies are not necessarily the same."

Ok, so we know all of the dystrophies cause muscle weakness, muscle defects, and cell and tissue death. This, of course, is obviously not normal. Our bodies are designed to REgenerate, not DEgenerate.

Now, most dystrophies are either named for the doctor who first studied the disease. or is a descriiption of where the weakness is. Here's a fair descriiption of mine:

"In most cases, FSHD muscle involvement starts in the face [mine didn't... I have a subset called scapulohumeral dystrophy which spares the face] and slowly progresses to the shoulder and upper arm muscles and then down to the abdominal and foot extensor muscles. Foot drop and foot weakness are early manifestations. Initial signs of FSHD include difficulty reaching above the shoulder level, foot drop, scapular winging [shoulder blades that 'pop out' like angel wings] and facial weakness. Weakness in the abdominal muscles can cause a protuberant abdomen and lumbar lordosis [it makes you look like a pregnant woman who has to shift her weight to adjust for her baby... or it just makes you look fat]. The lower abdominal muscles are usually weaker than the upper abdominal muscles. This distribution of weakness is not seen in many other diseases and, therefore, is very specific to FSHD."

FSHD is a genetic mutation which is either passed down from a single parent (autosomal dominant) or occurs sporatically. I have the sporatic kind. But now that I have it, each of my seven children have a 50% risk of having or carrying the mutated DNA. Basically what causes FSHD are missing genes on a certain chromosome that deals with muscle tissue information. A human has to have a certain number of these gene repeats to have healthy, strong muscles. If you don't have enough of these genes, you get FSH. The fewer of these gene repeats you have, the more severe the FSHD.

The "average" FSH patient has a 20% chance of ending up living in a wheelchair.

Chronic pain is a part of our lives, as is fatigue. Over 80% of FSH patients report pain in their lower backs and legs. As we age and progress, the pain "spreads" and increases in severity. Non-pharmaceutical forms of pain relivers that seem to help include strengthening exercises, massage, chiropractic adjustments, heat, and marijuana (but there appears to be a problem with accessibility and demotivation lol). The only pain reliver that seems to give lasting results is applying heat. I personally have found this to be true. Steaming hot baths, heating pads, and sunbaths feel WONDERFUL.

Severe fatigue is another major symptom of FSHD. This is due in part to problems inherent with motor functioning, bodily pain, and mental health. I am thinking that when toxins are removed from my muscle tissues, I should experience a lessening of the pain. This will help relieve fatigue, as will superfoods for energy and St. Johns wort and ginko for mental health.

Cardiac health is the same as for the non-affected individual. I am adding hawthorne and cayenne for general heart health. Plus it's important to keep the blood moving.

Respiratory health CAN be affected by FSH, and appears to be a problem in people who had an early onset of FSH. These people benefit from a BiPAP machine at night. Supplemental oxygen therapy can be very detrimental to FSH patients who have respiration problems. PLEASE do not use ozone or hydrogen peroxide therapies if you are one of these people. My respiratory health is fine, so I plan to add a bottle of hydrogen peroxide to my bath water at night. Some FSH patients experience sleep apnea. I don't.

People with neuromuscular diseases often have lowered potassium levels. Muscles leak positive potassium ions into the bloodstream. In my Incurables Party protocol, I address this by drinking 3 cups of homeade potassium broth daily. Dr. Christopher says every case of MD he ever saw had lowered levels of calcium. This is also true of me, so I will be taking herbal calcium. At the same time, Waco water is extremely hard and full of inorganic minerals. I also have been on calcium therapy for many years, but, not knowing until recently that calcium must be plant based in order for my body to assimilate, my body has been putting inorganic calcium all over my tissues. I am going to draw out the bad calcium and replace it with wonderful stuff.

It is important for the MD patient to stay well hydrated at all times. With all the teas and juices I'll be drinking on the IP, hydration won't be an issue. lol

Exercising is important in treating FSH. Physical therapy can be invaluable. Stretching exercises, such as yoga, are imperative. Swimming is also beneficial. And we've all heard it, "exercise, but don't over do it." Exercise till it hurts. Then stop. My expectation is that as I detox with the IP, I will be able to exercise longer and with more intensity. I will get stronger.

I don't know if I will actually be able to add genes to the chromosomes in my DNA or not. Scientists say it can't be done... actually, they say they don't know how, not that it can't be done. However, miracles DO happen at times. Also, our bodies and minds are more powerful than we give them credit for. I just want to get stronger and have a more normal life. I have GOT to try and see what happens.

Blessings to all,

Donna