No, I’m not bragging. I had my 6-month visit with the neurologist on Friday down in Pittsburgh. Even though it was only 20 degrees, it was a nice 2-hr sunny drive. On the way back, we stopped at Pam’s sister’s for a late lunch.
It was quite an interesting visit. Since I was the last patient for the morning, he was more relaxed than usual. And, of course, friendly, as usual. He spent more time than usual discussing and explaining about dementia.
Since I’ve been feeling quite well recently (I told him about the bad 6-8 week spell I had in August), I’ve found myself going into denial again. Thinking that I have been misdiagnosed and that I really don’t have any type of dementia and that its all psychological.
He once again showed me the results of the SPECT scan which I had a little over 1 year ago. He reviewed it and explained it to me. I’ve looked all over the web for SPECT scan pictures. I was not able to find one that looked exactly like mine. But I did find some which show relatively normal and abnormal results.
Relatively Normal Abnormal
On SPECT scans, the colors which are pink, red, orange, yellow are the normal areas. Those which are blue and green are abnormal. The above scans are taken from a different cross section from mine, so they do not represent the same pathology as mine. I posted these just to show the contrast in colors.
Very baffling to me. How can I be functioning at a relatively high level and have such highly abnormal scans? The majority of my pics were green and blue with a scattering of red, orange and yellow, consistent with frontotemporal dementia (FTD) and Lewy Body Dementia (LBD). He explained to me that individuals with FTD are highly intelligent with a high cognitive reserve which allow them to function in a relatively normal way and not always noticed by others as having anything wrong. He also said that I have the "slow" type which will allow me to go much further in life before becoming totally impaired. (Funny. I’ve never seen myself as all that intelligent. I was what I was and just took it for granted.)
He’s very pleased with the Aricept—Namenda combination and doesn’t want to change the dosages or combination. He also smiled and said that if I wanted to I could now go out and work.
"You’ll never be able to go back and function as a physician, but you could get a factory job or any other type of job which doesn’t involve the complexities of thinking required by a physician."
Now then. I couldn’t believe what I was hearing. Able to work again? That has to be some kind of a miracle, I told myself! But I’ll gladly accept it.
Needless to say, my mind has been racing with all kinds of things I’d like to do vs. what I could actually do given our residential location and driving conditions.
I did check online with the CA disability retirement plan which says that I can work as long as the salary + retirement benefits don’t exceed the amount which I made when I worked full time. Another unbelievable moment. I’m actually going to call them and discuss it on the telephone to make sure I’m not just seeing things.
Needless to say, I am excited. I’ve already started to look online for local job possibilities.
I just wish Pam could feel better and get the same kind of good news from her Docs as well. She’s been done with the pain, dizziness and trouble moving her arm and shoulder. She sees the "brain" neurosurgeon this Friday in Pittsburgh. Then we’ll also follow through with seeing the orthopedic surgeon, the physiatrist and physical therapy.
Some sad news though. I just spoke with a dear family-like friend whose husband suffers from Alzheimer’s Disease. He has now progressed to the point where he literally doesn’t know what "up" and "down" are. She’s finally worn down to the point of anxiety and depression. I gave her some recommendations to take to her PCP which I hope will help. Gil has the same neurologist that I do. He feels that Gil will need to be placed in a facility by this summer. Dorie doesn’t feel that they’ll be able to make it that long. I feel very sad about it. Life is just not fair.
Enough rambling for today. Going to watch some football…
Filed under: Frontotemporal Dementia, Lewy Body Dementia | Tagged: Alzheimer's Disease, Frontotemporal Dementia, Lewy Body Dementia, physiatrist, SPECT scan | 12 Comments »