Monday, September 5, 2011

Mito hit me with a sledge hammer!

Days after writing my last post I was hit with the mito sledge hammer. I had a stroke. The stroke caused or was closely followed grand mal seizures that are not easy to control. The third big hit was my stomach has slowed down almost to a halt along with my swallow muscles can no longer handle anything bigger than liquid. Mito is nasty that way.

A person with mitochondrial disease can be doing well for a long time or with minimal progression then take a sudden dive medically. Stress on the body like infections, heat, cold, or physical overexertion can cause disease progression. The best way to demonstrate this...

Think of the heart of summer in California. Everyone has their a/c on and all the normal electronics. Everything going full blast at once. A high function energy system can begin showing signs of stress and having rolling brown outs. What if that energy system had limited energy to begin with before this stress was ever added you could have severe outages. The same holds true with mitochondrial disease.

I was stressed system wide by whooping cough and the end of a long illness filled winter. A portion of my brain where I have had strokes before seems to be very vulnerable to this energy outages. I had a outage that caused a stroke.

Mitochondrial strokes are not your typical vascular stroke. Mitochondrial strokes are usually metabolic strokes. Often they do not immediately show up on MRIs and some may never. This is one HUGE reason to have a neurologist caring for you/your child that is experienced with mitochondrial disease. They know what to look for and how best to care for you through this difficult time.

An important rule of life for a person with mitochondrial disease, keep the stress of ALL kinds to minimum!

NOTE: Mitochondrial Disease Awareness Week is fast approaching! September 18-24th

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