On Easter Sunday my husband thrust his iPhone in my face happily yelping out; “It’s the Monty Python man, the one with dementia, he is in the paper again”.
Dementia, fronto-temporal dementia and the language variant; primary progressive aphasia, are not diseases I would wish upon anyone. In fact I would never ever wish illness on a person. And yet when a famous person such as Terry Jones suffers this disease it provides a great platform for raising awareness amongst the public.
The article my husband brandished under my nose describes fantastically how people with PPA can lose their ability to communicate, whilst remaining otherwise fit and able to undertake other activities such as walking, watching familiar movies, going to restaurants and maintaining relationships. The article highlights the close relationship that Michael Palin has with his old friend; the value of non-verbal communication and the pleasure of continuing to partake in normal social relationships. The journalist also flags the pitfalls- Terry is now unable to express his opinions, he has changed – no longer able to lead a conversation. In addition he is rather impulsive and he may not have full insight to his condition. This is the nature of PPA. I am so impressed his friends continue to maintain contact, having regular catch ups in restaurants and so forth. Not everyone has that supportive social circle. I suspect it is still rather difficult for him and his family and friends- they may not be sure they are doing the right things, that there is not some other conversation strategy that may work better. Not knowing what someone is actually thinking and feeling is, according to many of my patients and their families, one of the hardest things.
The family have made public their wish to share his tale in order to increase awareness. What a fantastic family. I am always amazed and humbled by how keen people are to help future generations – to contribute to the research and spread the word. These are people who inspire me!