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This article profiles the diagnostic journey of Linda Feld with the ultimate finding of a new calcium channel mutation for Periodic Paralysis  12/2013

Lehmann-Horn, Frank and Jurkat-Rott, Karin  Brain Medical Journal

Transient compartment-like syndrome and Normokalaemic Periodic Paralysis due to a Cav1.1 mutation

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3859226/

 

Wahl, Margaret.  Periodic Paralysis InFocus:  It's all in the muscles, not the head. 

QUEST . July-September 2009;16(3):pages.

This is a Quest  Magazine article on the MDA site, about Periodic Paralysis and features Linda Feld PPA Board Secretary and former Board Member Carl Parker.

http://www.mda.org/publications/Quest/q163infocus.html

http://mda.org/sites/default/files/In_Focus_Periodic_Paralysis.pdf

http://www.mdaquest-digital.com/mdaquest/2009070809/?pg=46

For further information about MDA, please visit their Web site: http://www.mda.org.

 


Link to Dr. Lehmann-Horn The Art of Listening Award at Genetic Alliance in Washington, D.C. July 2009

http://www.geneticalliance.org/ws_display.asp?filter=conference09.bio.lehmann-horn

http://www.youtube.com/watch?v=Uv0eRev9nZk

 

Poem by Victoria Shover, who has HYPO PP: 

A day in the life of a Periodic Paralysis Patient

The 911 call placed, you feel like you're dreaming,
You're not, from afar you can hear sirens screaming;

The ambulance ride, your body's not moving,
They wonder aloud, whoa, she's not improving;

Respiratory muscles won't respond to a breath,
You know once again that you're so close to death;

Whizzed in on a gurney, it's all moving fast,
What? You're parked in a hallway suddenly bypassed;

How are you this evening? Then give you that look,
The oxygen, sensors and wires they unhook;

They make you feel guilty, as if you are faking,
You're frightened, can't breathe, and everything's aching;

The ER visits, the doctors, the begging and pleading,
You would not desert me if I were here bleeding;

Weakness, paralysis and cognitive decline,
Inverted T-waves, arrhythmias are fine;

The patient is faking, playing possum I see,
With his hammer he can't get a jerk from the knee;

Agonizing pain, it strikes with a flash,
The doctor shrugs shoulders, departs in a dash;

Positive tests, plus symptoms and signs,
Potassium is low, but you will be fine.