One writer mov­ingly re­counts what life is re­ally like with a dis­ease that’s slowly de­stroy­ing her mem­ory


PIC­TURE THE fol­low­ing: you go to sit where there is no seat and end up sprawled on the floor, in a less than dig­ni­fied pose. You be­come dis­ori­en­tated in a friend’s gar­den, which is barely big­ger than a quilt, and can’t find your way out. You make a bee­line for the front of a long, snaking queue, in­cur­ring mass fury. You go to a Miche­lin restau­rant, suit­ably dolled up — and you but­ter your plate in­stead of your bread. Wel­come to PCA .

No, I had never heard of it ei­ther. Nor, un­for­tu­nately, had my GP.

PCA stands for Pos­te­rior Cor­ti­cal At­ro­phy. For an au­thor, as I am, it is pretty in­con­ve­nient, as it ren­ders you vir­tu­ally il­lit­er­ate. It is the same form of Alzheimer’s which af­flicted Terry Pratch­ett, and usu­ally kid­naps you in your 50s or 60s. It is de­scribed as rare. I have my doubts. Why should it be? I be­lieve it is sim­ply un­di­ag­nosed or mis­di­ag­nosed; not sur­pris­ing, con­sid­er­ing the weird raft of ap­par­ently dis­parate symp­toms.

Un­like the more usual Alzheimer’s, which af­fects the frontal lobes, gov­ern­ing cog­ni­tive func­tion and mem­ory, PCA at­tacks the back of the brain, caus­ing it to wither.This area is re­spon­si­ble for vi­sion; thus, spa­tial aware­ness, se­quen­tial aware­ness, ori­en­ta­tion, per­cep­tion, mo­tor skills and, as men­tioned, lit­er­acy, are all af­fected. If I had to de­fine PCA, I might liken it to be­ing both pro­foundly dys­praxic and dyslexic — only worse. Trust me to have some­thing ob­scure no­body has heard of.

There was a time when my brain and I were on in­ti­mate terms; cosy bed­fel­lows privy to one an­other’s in­ner­most se­crets. Now the brain grem­lins and I are at war. PCA takes away the free spirit in you. It chips away at con­fi­dence, de­prives you of in­de­pen­dence. The se­cond you walk out through your front door, you feel vul­ner­a­ble and ex­posed. I was even­tu­ally di­ag­nosed two years ago, but I be­lieve the first signs crept up on me sev­eral years ear­lier. Per­haps I should start with my driv­ing. Oh dear, my driv­ing! I’d loved driv­ing, but in­creas­ingly it be­came a source of dread. I could see per­fectly, yet I could no longer judge dis­tances, or where to po­si­tion my car in re­la­tion to the road. I couldn’t work out where or how to pitch my line of vi­sion. Signs leapt out at me, fill­ing me with panic. Busy junc­tions were a night­mare. I was for­ever clip­ping the curb, or, worse, the wing mir­ror of an on-com­ing car. I would ar­rive at my desti­na­tion wrung-out. I used land­marks, count­ing them as I passed them un­scathed. Re­vers­ing down our own drive­way be­came a hit and miss ex­er­cise, leav­ing zigzag­ging im­prints on the lawn.

For the last two years that I drove, I rarely had a pas­sen­ger, other than my Ger­man Shep­herd, and even he made it clear he didn’t like my driv­ing. No­body knew the ex­tent of my ter­ror: that I re­garded my car as a killing ma­chine and had to brace my­self when­ever I climbed into it, or that I dreaded be­ing re­spon­si­ble for a fa­tal ac­ci­dent.

Around the same time, I de­vel­oped an in­ex­pli­ca­ble fear of steps and stairs. Wind­ing ones, crum­bling ones, short ones your feet over­hung. They ex­isted solely for me to break my neck. I could as­cend them — no prob­lem; go­ing down was an­other mat­ter. Per­ilous as a rope-bridge, they swayed be­fore me, as I clung to the rail and made my ten­ta­tive de­scent.

As soon as I walk out of the door I feel ex­posed

There should be no shame at­tached to Alzheimer’s, be­lieves Va­lerie


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