Monday, February 29, 2016

February 29 -- Rare Disease Day

Recognizing the medical conditions that don't have major funding and political visibility. They're real, too.
 
 
 
 

IS THERE TREATMENT FOR PPS?

Yes. Polio survivors need to ''conserve to preserve,'' conserve energy and stop overusing and abusing their bodies to preserve their abilities. Polio survivors must walk less, use needed assistive devices -- braces, canes, crutches, wheelchairs -- plan rest periods throughout the day and stop activities before symptoms start. Also, since many polio survivors are hypoglycemic, fatigue and muscle weakness decrease when they eat protein at breakfast and small, more frequent, low-fat / higher-protein meals during the day.

ISN'T EXERCISE THE ONLY WAY TO STRENGTHEN WEAK MUSCLES?

No. Muscle strengthening exercise adds to overuse. Pumping iron and ''feeling the burn'' means that poliodamaged neurons are burning out. Polio survivors typically can't do strenuous exercise to condition their hearts. Stretching can be helpful. But whatever the therapy, it must not trigger or increase PPS symptoms.

IS TREATMENT FOR PPS EFFECTIVE?

Yes. The worst case is that PPS symptoms plateau when polio survivors stop overuse abuse. Most polio survivors have significant decreases in fatigue, weakness and pain once they start taking care of themselves and any sleep disorders are treated. However, because of emotionally painful past experiences related to having a disability, many polio survivors have great difficulty caring for themselves, slowing down and especially with "looking disabled" by asking for help and using assistive devices.

 

CND: Chronic Fatigue Syndrome: A polio by another name

Jane Colby, What Doctors Don't Tell You, 6(9)

Research into Post-Polio syndrome and chronic fatigue has-made the astounding discovery that the virus that most often triggers CFS is closely related to the one that causes polio.

Dr. Elizabeth Dowsett, consultant microbiologist of the Southeast Essex NHS Trust who is in the forefront of British CFS research, explains that true CFS (as opposed to fatigue states with other etiologies) strikes one clinically as being polio-like, and it has often been diagnosed as a "non-paralytic polio." "These patients have weakness, pain down their spines and are systemically ill," she says.

 

But if CFS is a type of polio, why doesn't everyone exposed to the relevant viruses develop ME just as they did polio?

It has been forgotten that, as Dr. Thomas Stuttaford of The London Times explains, ". . only a small number of those infected with the polio virus became paralyzed; about 90 percent didn't even realize that they had annthing more threatening than a cold." With polio and CFS, the state of your immune system governs whether you will be susceptible.

 

 

Life as we know it: Dr. Bruno: Parallels in CFS/FMS/Polio

 

 

 

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