Hereditary Dementia - Would You Want To Know ?

 As you may have read in an earlier post, last year my father was diagnosed with a type of dementia at the age of 62.  I have considered posting about this many times, viewed from many different aspects but each time I have chosen to push it aside.  Having just had my parents staying for a week it is once again in the forefront of my mind and this time it's coming out...be warned this could be a long and depressing post.

My mother had been convinced there was something wrong since before his 60th birthday. The reason his diagnosis took so long was that the type of dementia he has is rare.  Twice he was visited by a psychologist who set him tests which he passed with flying colours.  The explanation my mother was given was that he was just relaxing into retirement and was 'under-stressed', the implication being that without some stress we can't fully function.  Finally he was sent for a brain scan and our fears were confirmed.  Whilst he remains physically very fit and well,  my lovely Dad has already left us.

Dementia, in all it's forms, is a terrible disease and one for which there is very little, if any treatment.  Worse still, relatively little research is being done to find a cure.  If you are unlucky enough to get dementia, Alzeimers is currently your best bet.  There are drugs to delay the progression, and as it's by far and away the most common strain, most of the dementia research is aimed at Alzeimers.  Sadly my Dad doesn't have Alzeimers.  He has Frontotemporal Dementia, a type of pre-senile dementia.  It's called pre-senile as it effects people between the ages of 40 and 65.  One study found the average age to be 56.1 yrs.  I will post another time about the symptoms and how this effects the family as it is quite different to that which people generally associate with dementia.  It can also be an inherited condition with strong links in families.  Whilst we don't know the type my grandmother, great grandmother and great great grandmother all had dementia...

I'm sure you've guessed where this is going.  Will it be me ?  I am 40 already, and Star is only 1.  Have I passed it on to him ?  Should I have another baby and risk passing it on again ?  How long have I got ?  Will I stay well to see grandchildren ?  To see Star marry ?  To see him graduate ?  To see him finish school ?  To see him start school ?

I feel I've been living in the shadow of this since my father was diagnosed early last year.  The initial panic has passed but I think about it at least two or three times a week, sometimes more.  Every time I forget something...what did I come upstairs for ?  What was I saying ? Every time I drop something...one of Dad's early symptoms was clumsiness.  I don't feel as sharp as I was...is this the result of being a SAHM ? or the pregnancy brain loss not recovering ?  Every time something like this happens the thoughts cloud in... is this the start of it ?  I try to keep busy... with Star, with blogging, with tweeting, anything to keep my mind from wandering...and wondering.

One thought that crosses my mind is whether I would be better off knowing.  Do I carry the genetic blueprint to develop this disease?  Or to pass it on to my children ?  I worry about it now, so maybe if I was to be tested I could either breathe a sigh of relief, or start making plans.  But could I live with knowing what was awaiting my family and me ?  At the moment I have decided not to find out as I just think that to know, whilst watching my fathers decline, would be too much.  But I haven't ruled it out forever. 

We have been told that my Dad has, at best, a year of any kind of quality of life, after which he will almost certainly need full time nursing.  So this year my sister and I are trying to ensure that he does as much as possible.  Last week The Daddy  and I took my parents to Cirque Du Soleil and Chinatown, next month my sister is taking them to Mousehole in Cornwall for the weekend.  In  the summer we are all planning a big family holiday and I'm sure there will be other things organised.  It's very difficult to know how much he takes in, or appreciates, but he seems to enjoy these things, at least superficially, at the time...

If you suspected you may have inherited an incurable, untreatable disease would you choose to face the demon head on, or would you run and hide ?

Hereditary Dementia - Would You Want To Know ?