After hinting at or mentioning my muscle disease in quite a few of my articles, I think I should finally sit down and explain in more detail what exactly this disease is, how it affects me, and where I think God is in the midst of all this.  As you read this story, please do not think that I know all that can be known medically about this disease.  Also, please do not think that I “have it all figured out” or that I am some kind of super-Christian who has overcome this and “walks in victory” every day.

The story starts back in the 70’s when my sister Lorna showed signs of weakness and fatigue as she went through puberty.  I still remember how as a teenager that she could not throw very far, nor run very fast, nor lift heavy items.  She got worse in her 20’s and found that she could not accomplish daily tasks like grocery shopping and doing the laundry.  After a string of illnesses, Lorna went down to Jamaica to join her husband who was trying to find work there.  She did well in the warmer climate, but reacted to aloe juices that she prepared herself.  She ended up in hospital with lung congestion which led to pneumonia, and her weakened heart finally gave out and she died at age 33.

Back to the 70’s, a neurologist tried very hard to find out what was wrong with Lorna.  My recollection was that they thought she had some kind of muscular dystrophy.  They decided to do a muscle biopsy on some of the family members which ended up including my sister and me, my mother and my grandmother.  With their limited genetic knowledge back then, they saw something a bit odd in my grandmother’s cells, something more in my mother’s cells, and a lot more in my sister’s cells.  My biopsy showed I had a little bit of something else odd, but they decided then that this was just a female to female inherited disease.

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Now jump ahead 30 years to March of 2008.  I had just returned back from Papua New Guinea after doing some Bible translation consultant checking work.  I had literally been running through airports in February and worked many 14 hour days with the men.  But in March, I began to ache in various places all over my lower body, and somewhat in upper limbs.  After just being home for six weeks, these aches and pains increased to where I was unable to walk across my living room floor.  Definitely time to see the doctor.

Well, one test led to many more tests, and they ran through all kinds of possible diagnoses from osteoarthritis to fibromyalgia to arthritic rheumatism.  Finally a neurologist (who happened to be the same neurologist my sister had seen 30 years previously) suggested that I might have the same disease that my sister had and wanted me to see a genetic specialist.  I did that, and he had similar thoughts on this and ordered for me to have a muscle biopsy.

The results of the biopsy came back in November of 2008.  My geneticist said that the results showed with 100% certainty that I had a mutation on one of the genes within the DNA of my mitochondria.  The umbrella name which my disease comes under is called Mitochondrial Myopathy.  Put in simple terms, mitochondria is the energy production part of your cell and is in all the cells of your body, but mine now do not work properly and so I cannot produce a normal amount of energy for my body like others.

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The technical name for the disease is MELAS 3243.  The letters are an abbreviation from “Mitochondrial Myopathy (muscle weakness), Encephalopathy (brain and central nervous system disease), Lactic Acidosis (buildup of a cell waste product), and Stroke-like Episodes (partial paralysis, partial vision loss, or other neurological abnormalities)”.  (Taken from Mitochondrial Disease Foundation website.)

Now not to panic anyone, although I may be susceptible to all of the above disease manifestation symptoms, it does not mean that I will actually experience them all.  In fact, I am probably mostly dealing with the fatigue and pain that comes from the lactic acid build up in my muscles.  (Imagine a marathon runner whose muscles are all cramped up and it looks like he is going to collapse due to exhaustion just before the finish line.  That is very similar to what I experience every day.)

So this disease has placed some severe limitations on my life.  On a very good day, I may be able to walk as far as 12 to 15 city blocks.  But due to pain, or fatigue, or both, on most days I can only walk about 2-3 blocks and I can only do this much if I am using my 4-wheel walker and go at a very slow pace.  And at home, I have to sit most of the day in a recliner chair to keep my legs up in a comfortable position.

There are in still many activities that I can do such as drive a car, help with the dishes, go to a restaurant or a movie theater.  But in most of these activities that are outside of the house, I have to use some kind of equipment to help me (walker, arm-clasp crutches or a telescoping walking pole).  I have in fact been labeled as “disabled” by my doctor and by the government which has provided a small disability pension.

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And where has God been in all of this you ask?  He has in fact been much more gracious to me than you might first imagine.  Three things come quickly to mind for me.  First, this disease which normally shows up in your teen years, did not show up in me until I was 47.  God gave me an extra 30 years of good health.  And we were not living overseas when this first started (I could have been crippled in Africa).  And in spite of the huge physical challenges I face each day, God has still allowed me to serve overseas on short mission trips to continue doing translation consultant work.

I want to say a lot more about how God is still working in and through my life, but I am going to leave that for the next article.  This is part one of the story.  Join me in a couple of days to read the rest of the story.

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