Monday, September 11, 2017

Our Alzheimer's Journey ~ 5/7/17

I have to make a note about getting a new CPAP.  The vascular concern is not about the CPAP. It's about Jordan's diabetes. He's had bouts where the sugar was too high and his A1C was "out of control". It's believed that the extended periods of out of control diabetes have been a contributor to the vascular issues. There's also a chance that he had a very small stroke at some point. (A silent stroke). 

I didn't mention this...because it wasn't relevant until just now when I remembered the CPAP. Remember we had to get a new Primary Care Doctor in October? The doctor we had for 5 years went to a different group at Duke (concierge Dr). October was when he was due for his annual check up and was also the time where I realized something was wrong...(for sure). I called and talked with the practice (different office) and decided on "Dr. Sam". He is EXCELLENT. He took the time to understand what was going on...let's say we were a big hot mess...His diabetes was out of control. He was clearly depressed and he had the confusion thing happening.  On that first day, he referred us to the neurologist. Once we got in with the neurologist he kept in close contact with the neurologist (phone and email). They worked together. Dr. Sam also helped us with the meds. He decided to "start over" with his meds. Instead of Metformin, it's now Janumet. --He prescribed additional anti-depressants. All had immediate results. Dr. Sam had us coming back for follow ups every 4-6 weeks...which we really needed to verify the meds were working, etc.

Our next appointment was scheduled for 5/18...which would be after the neurologist....

I got a call week before last from the practice saying Dr. Sam was leaving the practice and would no longer be there when our next appointment was. It was after 5:00 when I got the call...but it was before 6:00 and I was in my office. Here's the embarrassing part: I started crying on the phone. Just thinking about it makes me want to cry a little. This is  the 2nd Dr. we lost in 2 years." We would never be as far along with Jordan's medical situation without Dr. Sam. I can NOT imagine trying to bring another doctor up to speed.

The point of the story? I have to find / figure out who/what we want to do for a new primary doctor. I'm so disappointed about losing someone like Dr. Sam. I'm also disappointed that we haven't been able to achieve continuity of care.

So, CPAP is on my list. 

Regarding driving. The neurologist said he is NOT obligated to notify DMV. I think the fact that I told the doctor I ride with Jordan regularly helped him get comfortable. The doctor also said that it's not clear cut. Most of Jordan's driving doesn't require short-term memory (according to the doctor). The doctor says it's only a problem when the person gets confused and panics.

The tracking app is an i-phone app.  (free). Forgot the name and I'm too lazy to get up and get the phone. 

As I've worked with the neuropsychiatrist (the tester) and we talked about symptoms, it is clear that he had symptoms long before I put it all together. I had attributed most of the "episodes" to stress (stress of selling the house and moving). He was definitely experiencing symptoms before we moved to the apartment. It is likely that he noticed symptoms without "diagnosing" them long before. 

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