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08/22/2007: "Testing My Brain"

I was always told and read everywhere that ALS does not affect the mind, almost like I should take comfort in the fact that even though I will eventually become totally paralyzed by this disease my brain will remain unaffected so that I will be completely aware of the condition I am in. I guess that this may not be completely true after all. It is being found that some ALS patients are being affected by a type of dimentia that affects the fronto-temporal lobe of the brain. It is called Fronto-Temporal Dimentia or FTD. I went back to the Cleveland Clinic recently to the Neuropsychology Dept. to be evaluated because I have been concerned that I have been having some cognitive difficulties. Other family members have noticed some changes as well. Dr. Pioro(ALS Doc) wanted me to get some tests run and I agreed to do it. At my appointment, I first saw a psychologist who asked me and Chris alot of questions and then explained what they would be doing that day. She said that the tests would normally take about 6 hours to complete but that they modified the tests because of my weakened state and since I would not be able to respond verbally as much so my tests would take only about 3 hours. The doctor did explain that it appears that some PALS are having cognitive issues when the ALS symptoms become Bulbar region involved. The testing involved memorization, word association, and problem solving type tests. At least there were no needles, no cat-scans, no MRI's, and no electric shock involved, just me using my brain. Ah-Oh! It was tiring and I was glad when it was over. If you want to know what I found out, you will have to come back later because I don't have the results yet. More waiting! ..........Debbie