Nothing really new to report regarding Marcia's medical odyssey. We spent about 4 hours at Columbia University's Neurological Institute. I sat through more neuropsych testing with Marcia. These tests are grueling for Marcia, frustrating to say the least. For me, they are heartbreaking. Marcia has always been smart, quick, energetic and articulate. I watched as the doctor asks her to pick up a piece of paper with her left hand and put it on the floor – and Marcia picks up the paper with her right hand…. Other examples clearly show her memory isn’t what it normally is. Outwardly, I was supportive and showed no surprise or any real reaction. Inside, I was crying, sick to my stomach and overwhelmed at the reality of how much has changed with Marcia.
While the new doctor (Dr Honig) read through all Marcia's medical reports, and conducted tests of his own, he still needs to see the MRI and PetScan himself. Overlook, the referring hospital, only sent the write ups. We are having the MRI and PetScan results sent over this week. Two months since our last trip to Overlook, and we can’t get all the information sent over/received. While I have nothing but good things to say about the quality of the care, clearly doctors so used to dealing with this type of news on a daily basis have lost perspective how patients and families lives are totally in disarray and don’t want to wait. I’m tired of waiting, and I’m finding it harder to function normally at work with so much weighing on us over such an extended period of time. Almost 5 months since the PPA diagnosis and we still don’t know what she has and what we can do.
Dr Honig definitely sees Progressive Aphasia (PPA), but sees "non language things happening too". He feels like he could make a case for one of two diagnoses, but doesn't want to do so until he can see the films because she has an "atypical presentation" for both, meaning its not clear cut. This will likely take a couple more weeks. His perspective based on the information he read, saw and tested is that Marcia has a form of mild dementia, either Alzheimer's (AD) or Fronto Temporal Dementia (FTD). He's leaning towards AD.
If we get an AD diagnosis, we will look at options to participate in AD clinical trials. Columbia is a clinical trial center and Dr Honig is well known in clinical work around aging and dementia. We still have not spoken to Riley and Ryan about possibilities and were not encouraged to do so. Will cross that bridge when we get to it -- after we get a confirmation as to what the experts believe.
Marcia continues to hold up well, under the circumstances. I would say the same is true for me. I'm really inspired by Marcia's strength and that of her family.
Long road ahead. Even though we don’t know for sure what she has, all the options we’ve been presented are non curable ones. Whatever the steps of grieving are, I feel like I'm past the shock/denial phase. October through February has been a blur and I’ve certainly experienced a lengthy “funk”. The ride in to work was always the worst part of every day. Nights were often restless, seeing the kids off to school and saying goodbye to Marcia. Some days I didn’t even remember how I got to work. Just ended up in Morristown.
I don't know if I'm doing things the "right" way, but with God's help, and Marcia's resiliency and strength, I'm getting through each day. I have prepared and researched as well as I know how and am preparing for the future at the right pace (not getting ahead of things, not neglecting things I should prepare for). Really trying to be there for Marcia and keep things as normal for Riley and Ryan as possible.
I'm not spending much time on possible diagnoses, other than general research. As I've read through other people's experiences on line, I'm not finding it helpful yet. Most of these "case studies" always start with "my wife was 74 when she first started showing signs of....." This would be great, and very helpful, if I were retired and didn't have kids at home. But useful ones are surely out there and I'll keep looking.
More to come once we hear back from Columbia
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