The Rate of my Decline


Not the catchiest, upbeat title for a blog post I know, but bear with me.


Like many of us nowadays, I have plenty of time to sit and think. This can be a very productive and worthwhile process, but it also has its dangers.


It is generally accepted that introspection, if taken to extremes, can cloud our self-perceptions and unleash a host of unintended consequences. Sometimes it may surface unproductive and upsetting emotions that can swamp us and impede positive action. Introspection might also lull us into a false sense of certainty that we've identified the real issue. But how are we to know if our introspection has led us down a false trail to a dangerous destination?


For me, the solution is to use people who I respect and trust as a sounding board for the theories that emerge from my periods of introspection. I need people who are honest and blunt to listen to what I have to say and let me know if it has merit, or if I am barking up the wrong tree, or just plain barking mad. The truth sets you free.


Anyhoo. My latest round of introspection had me thinking about the rate of progression of my Alzheimer's disease. What metrics can I use to identify its progression, and how can I map my path through dementia to the finish line? I want to measure the rate of my decline. The worst thing about this pesky disease is that no-one can say how long an individual's piece of dementia string is likely to be.


I still feel as if I will live forever, but I have a burning desire to find a way to gather enough data to extrapolate a rough "endex" date. Yet post diagnosis check-ups and consultations are few and far between, and do not enable me to quantify any decline in a meaningful way.


Do any of you clever people know whether regular MRI scanning would produce a "rate of decline"? I would welcome this information as an aid to planning for my future, and as a way to tell if the donepezil hydrochloride tablets I am taking are having a braking effect. Or am I simply overthinking things?


The bottom line is that I feel helpless. I float along on the river of dementia without a paddle, rudder, map or compass, and I have no shadow of an idea how long it will be before I reach the end of the river. And I really think that another MRI scan would answer some of my questions. Sadly, I guess the chances of getting one are near zero.

91 views2 comments

Recent Posts

See All