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Adventures with Louie
18 hours ago
Welcome to our CaringBridge website. We've created it to keep friends and family updated about Louie. Get started by reading the introduction to our website, My Story.
Visit often to read the latest journal entries, visit the photo gallery, and write us a note in our guestbook.
I never go the easy way through medical issues. Currently I am dealing with Multiple System Atrophy (MSA), a progressive, incurable and ultimately terminal degnerative brain disorder that profundly impacts the atuonomic nervous system (which manages most of the automatic functions of the body) I also have Celiac Disease, Type II Diabetes, Stage Three Chronic Kidney Disease and a multitude of skeletal problems. Put it all together and there's lots of business for the medical community in this old body! I've become something of a master at producing kidney stones and I even figured out a way to break one of the stainless steel rods that runs along my spine without damaging the spine.
On August 25th, 2009 I had my fourth major spine surgery. It was done at the University of Colorado Hospital in Aurora, Colorado. It was a 10 hour surgery. It was aimed at both some corrective work and repairs on my lumbar spine and sacrum. They removed a wedge from a lumbar vertebra to put the right curve into my lower back, fused the rest of the lumbar spine and sacrum, put in new rods for that area and then linked the whole thing to the existing rods. The new rods were about 13 inches long plus a couple of inches of overlap with the old rods. The old got reduced to 16 inches so the combined length now protected by rods is about 29 inches long.
My surgeon and her huge team were terrific, following me very carefully for my days in the hospital and since. The surgery was successful. One of the great surprises of it was the discovery of the cause of the chronic severe headache that I lived with 24/7 for three years prior to the surgery. When they opened my back, they realized that the screws holding the lower ends of the old rods had worked loose. The result was that the screws were moving back and forth along the sides of the sack around the spinal cord, causing chronic leakage of spinal fluid, and therefore chronic severe headache.
They kept me flat on my back for four days and then very slowly and a carefully stood me up. No headache!
However, the damage around the spinal cord also apparently damaged key ganglions of the Autonomic Nervous System which either initiated or accelerated a progressive deterioration of that system.
My right knee was replaced in February of 2010 and the left knee was replaced in May of 2011, joining my hips which were replaced in 2008. As a good friend says, "When Louie finally kicks the bucket, the family should take him to recycling instead of the mortuary." In the summer of 2011, we found out that the steel on steel hip joints that were both "installed" in 2008 are slowly leaching toxic chromium and cobalt into my blood stream. This may result in having to replace the replaced hips.
Both the Celiac Disease and Diabetes are well controlled. The Celiac disease may also have been triggered by autonomic failure. All of my major organ systems are impacted by this failure - heart rate, respiration, circulation, digestion, muscle function and others - essentially anything that is supposed to be managed or moderated automatically.
At the end of 2010, we moved back to Minnesota due to my slow and shallow respiration rate, which doesn't work well at Colorado altitudes. I had been put on oxygen 24/7 in the Spring of 2010, but I can live safely without it at Minnesota altitudes, at least for the present.
In general, I have had to slow down. Some things that I used to love to do, like gardening and hiking, are no longer possible. I now walk only with a walker, use numerous tools to get dressed, eat with special silverware and need help doing a lot of simple things like reaching for things, or opening doors. My right side has weakened more than my left, but both sides are much weaker than they were in 2011, but the process has slowed down. Nancy does about 50% or more of the driving these days.
My limitations fed into our decision to move into a condominium with everything on one level and no maintenance to do. In the middle of all of this, Nancy and I have found ourselves blessed beyond all reason through the grace of God and the love of our friends and family. I've reconnected with my grade school class and found a treasure trove of friendship there. I've also reconnected with my Christian Brothers novitiate class with similar results. Life is good and rich.
I daily find that I have much to be thankful for, happy about and laugh about and we manage to do plenty of all of that.