In 2010 & 2011, I was asked to be part of a panel made up of memory impaired people & their caregivers at an Alzheimer's Assoc. sponsored event called Map Through the Maze. In 2010, 2011, 2012, & 2014, I was also able to attend the Alzheimer's policy forum conferences in Washington, D.C.
Most of my days are good, but there may be moments that aren't so good. What I refer to as "Bumps" in the road. I also refer to this as the “fog.” There will be times when I won't recognize people or remember conversations. I try not to get stressed out when my brain doesn't seem to be functioning right, but sometimes that is hard to do.
I think that since my diagnosis, I have noticed some changes or decline. Soon after my diagnosis, I had to give up reading books because I can’t remember what I read from paragraph to paragraph or from one page to the next. Another way that I think things have changed for me is that I now struggle, almost daily, with comprehension. This is very difficult for me to deal with. Very recently, my boyfriend & I have noticed that sometimes at night, I will fidget. As these changes happen, I will continue to figure out how to overcome these challenges. I continue to start each day with a positive attitude!
In April 2014, I saw a new neurologist & he asked me if I ever had any neuropsychological testing & I said no. He asked me if I would like to get that testing done. The Dr explained that he felt that it would give some insight as to what I'm dealing with, although he did tell me that he thought that it was MCI. I agreed to have the testing done.
In Sept. 2014, I spent almost 4 hours completing the neuropsychological testing. On Monday, Oct. 20, 2014, I had an appointment to hear the results. The neuropsychologist said that one way to tell how a patient is doing & what the correct diagnosis is, was to follow their progress over time. It had been a little more than 9 years since my 1st & 2nd diagnosis, so there had been a lot of time that had gone by.
He felt that if the correct diagnosis was EOAD, then I certainly should have progressed. I was still able to work & function fairly well, but what showed up in the testing was this. He said that the testing showed that I had problems with attention, & verbal & visual memory. I told him that I felt that I have progressed with my lack of comprehension. I know that they did a little testing on this. He said that he felt that EOAD was not the correct diagnosis, but MCI was. He said that I should probably follow-up in 8 months to see how I'm doing & perhaps they might even go deeper into testing my comprehension. The doctor said that he would be typing up a report on this testing & send it to my neurologist. He said that I still need to be concerned about my memory, but that he felt that at this time & previously that it probably is not dementia!
In thinking about the weeks between testing & the results, I felt that there could have been 3 possible conclusions. The doctor could have said that I have a form of dementia, but it is progressing very slowly or that I have MCI, or perhaps there was another possible outcome. Perhaps my test results could have showed that they didn't tell a complete story & that there were still questions about what I was dealing with.
On Monday, October 27, 2014, I went to my follow-up appointment with my neurologist. I let him know that I had a fall since seeing him last April & suffered several injuries including a concussion, but the concussion was all healed.
He said that he hadn't received a formal report but did receive some notes from the neuropsychologist. My neurologist explained these things to me. He said that the testing showed that my auditory memory is much better than my visual memory. He said that if I had Alzheimer's, that I would have progressed so much more in 9 years since my 1st & 2nd diagnosis. The doctor also said that since the tests confirmed that I have been dealing with MCI, rather than Alzheimer's, since the beginning, that if it was going to progress to Alz., that it most likely would have happened within the 1st 5 years. He said that the tests did show some problems with my memory & that is a concern, but @ this time, he agreed with the neuropsychologist & would not consider it Alzheimer's.
He said that I should continue doing everything that I've been doing. I need to continue taking the Galantamine to help with clarity & he would like to see me once a year. Some time between this visit & now, my neurologist has requested for me to see him every 6 months.
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I don't think that anything will change for me because I am still living with a memory impairment, but for now, things aren't as serious as they could be. I will still continue to do things to keep my brain active & engaged.