My husband, Allen, was diagnosed with PPA in 2006. Annual scans since then show that the left side of his brain is deteriorating at a modest rate. And his communication competence has deteriorated accordingly. Even so, the extensive regime that he follows of various self-designed therapies of intellectual activity appear to be paying off, according to the gerontologist who treats him. And last month's annual visit to the specialist, following this year's nuclear scans, resulted in a big 'thumbs up': "You've made my day", was the gerontologist's summary. It might well have been otherwise, however.
We were lucky in having a surgeon who was totally supportive of Allen’s needs and, most importantly, who recognised and validated my expertise in interpreting Allen’s behaviours and responses and my knowledge about PPA. Initially at least, I did not enjoy the same relationship with the other health professionals who treated Allen through long weeks of post-surgical hospitalisation. And if your partner suffers from PPA, be prepared for the fact that if you have done the minimum amount of research about PPA that caregivers usually do, then you will probably know more about the condition than anyone who treats your husband in a routine hospital environment. So you, as advocate, may well be your partner’s most important healthcare provider. And this may be a tiring and thankless job, since health professionals’ initial response to you may well be hostile. You may have to fight your way into ALL consultations about your partner’s care – including being present when ‘rounds’ are done (initially, I was locked out of the ICU ward at these times). The only medical professionals who really know and understand your partner’s needs – e.g. your family doctor (if you’re lucky), your gerontologist or other specialist – will not be accessible to you and your partner in hospital. So your partner may be treated as if he or she is demented, which is distressing. Or just as bad, information, questions and/or instructions may be directed at your partner, which he or she either cannot understand or remember, and which he or she cannot tell you about, if you weren’t there at the time.