The story of David Napier
A Mountain to Climb
Stiff Person Syndrome! What’s that?
Imagine going through every test known to man plus some.
This has happened to me in the past 20 years, I thought I had a diagnosis then I was told they had changed their minds, over all I spent 84 days in hospital under some of the best brains in the land and at the end of that no definitive diagnosis, just more medication.
Add to that the complete loss of your voice for three months not a word not a syllable, frustration growing ever deeper communicating by a synthesised voice through your smart phone.
Then your eyesight is affected badly, you wonder to yourself what next, then it hits and hits hard depression anger, frustration resulting from the condition not caused by the condition.
We expect so much from our clinicians but sometimes they are stumped, I have elements of Stiff Person Syndrome and Isaac’s Syndrome & Bradykinesia that makes me more than one in a million.
You have a choice you can go to bed pull the covers over your head and never get up again or you can decide to climb the mountain, yes, it is very steep and the oxygen level gets less as you climb ever higher, but on you go climbing higher and higher every day you know you will never reach the summit but you still keep pressing on regardless.
This is a lonely journey but for one, the one who cares for you 24/7 the one who endures your moods, your anger and keeps coming back for more in my case my amazing wife.
Living with a disability changes everything, your friends stop visiting, you begin to become isolated, you begin to lose hope, and then you remember you have been here before many times, that is what it is like when you have a condition no one else has, Don’t ever Dis my Ability, because my abilities far exceed my disability and that plus my faith is what defines me, that’s what drives me to see others in a similar situation given all the help they need to lead productive lives, and when possible join them on the climb to the top of the mountain.