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As I previously said, he has a pacemaker/defib. and since he is dependent on the pacemaker it makes magnetic imaging impossible. He has has many CT's, read by many drs. The outcome has been consistent. Normal vascular, normal age related atrophy. His inability to walk, aphasia, choosing not to eat by mouth and his moving in and out of periods of alertness has remained fairly unchanged for 2 months. Also remaining unchanged is his ability to, when alert, walk ( move his legs and feet with intent), speak meaningful sentences in relationship with to the conversation, eat and drink things that bring him pleasure (beverage or sweets). His memory has improved to the extent that he remembers the people that he sees through the day. When alert he can repeat a sequence of items.
Still puzzling is this constant tightening of his arms, jaw, neck and back. This is not present when sleeping soundly. It begins to calm down as he falls asleep. It is present until he reaches a deeper sleep. As soon as he wakes up it starts again.
All professionals agree it is not Alzh. Other things such a CJD and Hashimoto's Encephalopathy have been ruled out. There are some symptoms of stroke but not enough. I have cared for family members who had dementia and this is not even close to that. I will check for the normopressure hydrocephalus, although the symptoms sound familiar.
Was looking for, hoping for, symptoms to sound familiar enough to lead me/us to another direction. It takes 10 to 14 months to get into a university hospital neurology dr. The local guys just don't see much beyond the normal.
Future plans are as you described. PET and another EEG. What 'other' metabolic problems should we have looked at. Yes to Thyroid and B12 tests, normal ranges on both.