FTD? PPA? CBCG? WTF?

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Fronto-Temporal Degeneration  – now there’s a mouthful of medical jargon.

To the uninitiated, this term has no meaning at all. Until it is explained to you that it is a type of dementia. Then it gets scary. Everyone’s heard of Alzheimer’s disease right?. Funny how neither of these terms mention the word dementia – ‘degeneration’, ‘disease’. Used to be called ‘senility’ or “Auntie Joan’s gone a bit funny”

When you hear these words during a doctor’s appointment, you may not understand what they mean – literally or clinically. It will take some time, maybe even never, for you to understand.

You may also hear the words “Behavioral Variant” or “Pick’s Disease”, or “Primary Progressive Aphasia”. This will seem like Swahili to you if you are an English-speaking person of average intelligence. If you have less than an 8th-grade education, it may as well be. I have been a nurse for over twenty years and I have to tell you, these terms were all new to me six years ago.

So, based on personal experience, here are the top three things that you should ask during an appointment with your neurologist.

1. Can you explain that in Layman’s terms please? 

Neurologists are highly educated, specialized doctors whose only point of reference with real people is that they get up in the morning and put their pants on one leg at a time. They have spent many years studying their craft and usually continue to keep up to date with the latest research. However, this ‘braniac’ state is not normally accompanied by a strong sense of touchy-feelyness. They will be short (often in stature too) and to the point. They will spew ‘differential diagnoses’ at you. Differential Diagnosis means that they are thinking you have one of two things but they’re not sure which. You need to be clear about what he/she is ruling out and what can be ruled in. In words you can understand.

2.  What should I do next?

     Once you have your ‘Differential Diagnosis”, what do you do? Do you go home and cry even though you don’t know why? Do you throw yourself under a train? Do you go home and distribute all your worldly goods to your nearest and dearest? Make your doctor be specific about the plan – it should be a discussion, a plan – not him/her telling you what to do. The doctor’s job is to offer options and then work with you to help decide on the one that’s right for you. If you can’t help with the plan, it is not being explained to you in words you can understand (see point 1.). Ask some more.

3.  If I were your husband/wife/mother/father, what would you do?

     You’re not asking them to tell you what to do, but you can bet your bottom dollar that they would have a plan if this was happening to them. They would be seeking the very best care; the experts in any kind of dementia; the researchers, the innovators.

Most of what goes on in the human brain is largely unknown to us. Neurologists like most physicians learn their craft based on historical data and ongoing research. Because neurology is a specialty, they have studied for several years beyond basic medicine, residency and practice. Many of them are older, – Boomers.When they were in school, ‘bedside manner’ and compassion were not taught as part of the curriculum. They will tell you the facts and then let your imagination run wild on the way home.

Don’t get me wrong. I am not saying that neurologists are not good doctors. But because their world is of necessity, erudite and academic, they often don’t understand that when you are faced with a terminal diagnosis, their work cannot end there. Even if they can’t provide what you need psychologically and emotionally, it would be good if they could at least begin the process of pointing you in the right direction.

Ask, ask, ask. Don’t leave the office until you have a grasp of what is being said to you. Ask the doctor to write it down – draw a picture if it helps. You will be stunned. Just be sure that you understand what you have been told. Dementia, degeneration, disease. They all mean broadly the same thing – something is broken. If it can’t be fixed, you need to know that.

    

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