As I sat in various waiting rooms at Mayo Clinic listening and watching people, I came to the conclusion that
"Everyone has a story"
The stories vary in many ways but they all end the same, people are looking for answers to a medical problem and that is why they are at Mayo Clinic. Each story is as unique as the person telling it, some people are very patient while others are more demanding, some have doting family members, while others sit quietly by themselves, lost in their own thoughts. Some like Greg, Kiefer and I are there for only a few days, while others have been there for what seems like eternity (one couple we met had been there for 5 weeks and were very excited that they were scheduled to go home in a week.)
Monday the 8th Greg, Kiefer and I set out on an adventure to hopefully find some answers. It was cold, snowy and very, very windy, roads were closed, we saw many vehicles in the ditch, including semis. What should have been a 4 hours drive straight east on I-90 turned into a 9 hour trip, getting us to Rochester in a very round about way, 2 hours of which were spent in a traffic jam. God's grace was more than sufficient in keeping us safe and in being able to reschedule Greg's appointment with the physician to Tuesday morning and all the rest of his appointments being able to be rescheduled as well.
Greg was a trooper while he endured various appointments including an MRI, PET scan, lots of blood work, an EMG and a lumbar puncture (spinal tap). The results of the spinal tap will not be available for 4 to 5 weeks, so we are scheduled to return to Mayo in March. With the spinal tap they are looking for Tau Protein and "CSF markers" for Alzheimer's Disease.
The conclusion: the physician is fairly certain Greg has Early Onset Alzheimer's Disease with aphasia, the fluid from the spinal tap will give us the definite diagnosis. Aphasia is simply an impairment in language, that is why Greg "grasps and searches" for words and why he is so quite and hardly talks.
What it means: Greg will hopefully not have the behavioral problems that are associated with Frontotemporal Dementia (FTD), his short term memory loss will continue to decline and yes he will forget his friends and family. Is it genetic????? We will probably never know, the only way to find out is genetic testing and without doing the genetic testing we will never know. We've been told that genetic Alzheimer's Disease is extremely rare.
Is the correct diagnosis: we can only trust the physican that we saw and all the testing that was done. I did find out that the physician that Greg saw is "the best physician at Mayo to see for Alzheimer's" (this came from several nerses and staff members) and he deals espically with Early Onset Alzheimer's. But the only certain way is to do a brain autopsy after Greg passes away.
So for now we keep doing what we have been doing. Enjoying the days that we have together and trusting in the Great Physician for only He knows what will happen.
