Hydrocephalus : Ageing just one more “obstacle”…

Hydrocephalus : Ageing just one more “obstacle”…

Obstacles are usually things you can overcome or navigate around…So, maybe saying “Ageing” is an obstacle, isn’t entirely right.  Meh!

My 8-year-old daughter, constantly tells me “Mum you’re getting old”, as if to console me.  This is usually in response to my reaction when I either forget stuff or complain about my insane loss of hair lately.  I try explaining to her that I’m not “that” old, I have this condition and had brain surgery.  I have a problem remembering stuff and even making simple choices, is a challenge.

But, I think she’s too young to understand…

It got me thinking though.  Ageing is something none of us have control over.  What it brings with it, none of us can predict or prepare for, not really. 

A few months back, I mentioned to someone that I’d lose my way easily when I didn’t know where I was and they likened it to Alzheimer’s (reading some of the similarities listed here, is pretty scary when compared to Hydrocephalus).  I thought about this for a while, and felt a bit of a sting at the realisation.  I suppose it was one way of getting them to understand what I meant, by agreeing.  Even a thing like Dementia is borderline in similarity to some of the things we experience (If not spot on!).

Then, further to that, it got me to the realisation that when we (with Hydrocephalus) get older, the struggle to be heard and taken seriously may just increase even more.  That “obstacle”, which none of us can avoid, will probably be masked by so many other ailments.

Memory loss and confusion could be classed as early onset Alzheimer’s or Dementia.  Probably one of the main reasons why the elderly are misdiagnosed at onset.

Vision problems are not uncommon, though it can be a side effect of increased intracranial pressure and an indicator that something is up.

Surgery (of any kind), becomes riskier the older you get and most surgeons proceed with caution… 

  • Can your heart handle it? 
  • Are you strong enough to recover from it? 

These are just some of the things (I assume) is taken into account.

I can’t really say I blame them in this regard.  But, where does it leave you, the one afflicted by all the suffering..?  A damned if you do, damned if you don’t situation, for sure!

Who will fight for us when we reach this age..?  What are we to do..?

This post probably emphasises the seriousness of the opposite spectrums of Hydrocephalus.  (Yet, it’s something for all of us to think about).  The infant/toddlers and the aged…fragile and in need of advocacy.  A voice to speak for them when they can’t and someone to fight for the treatment they need – I say fight because, there are definitely too many of us who end up having to do this, just to be taken seriously.

Do you have a parent, recently diagnosed, in this position?  Or, are you yourself in this boat?  Alternatively, if you’ve overcome this “obstacle”, would you care to share your story?

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

2 Comments

  • Richard pargeter

    April 14, 2019 at 4:54 am Reply

    Ty for doing what you do… you are an inspiration to many…

    • Skyewaters

      April 14, 2019 at 9:39 pm Reply

      You are most welcome Richard. Thanks for saying that💙

Post a Comment

This site uses Akismet to reduce spam. Learn how your comment data is processed.