My wife was diagnosed with PSP in 2005 and is now in the later stages of this horrible disease.
I wrote a couple of poems about the impact of PSP on our lives in 2005 and again in 2007.
I originally posted these on the PSP forum, but have attached them below for the folks who use his site.
PSP -- Our Message – CARPE DIUM
A silent assassin in the brain
Quietly destroying without causing pain
Destroying the very cells of existence
Slowly but surely with no known resistance
The outward signs are hard to perceive
As initially it develops at its own speed
But slowly a signature starts to appear
As changes creep in with each passing year
Dexterity, balance, speech, vision and gait
Are amongst the functions that deteriorate
With each case following a different line
In differing degrees and speeds of decline
It changes your familiar way of life
Your role as a parent or husband or wife
Your dreams for the future become more obscure
Your ability to cope seeming far less secure
The PSP Association is there for you
Increasing awareness and research too
Providing help and support through its various teams
Trying to minimise the impact on your future dreams
As researchers strive to find a cure
And help from family, friends and carers near
Don’t give up hope , that’s not the way
Take our advice, LIVE FOR THE DAY
2005
Together but alone written 2007
For 41 years we’ve lived as one
We shared our lives together
We shared our thoughts together
We shared our plans together
We shared our dreams together
We shared our joys together
We shared our problems together
We shared our sorrows together
We shared our love together
We laughed together
We talked together
We cried together
We created a family together
We shared our holidays together
We shared our family duties together
We shared our days together
We shared our nights together
But now the dream has ended as PSP appeared
Our lives have changed forever
Our lives have lost their spark
Our lives have lost their fun
Our lives are together but alone
Our dreams are shattered
Our sharing destroyed
Our future uncertain
Our lives on hold
Our roles have changed
Our conversation dulled
Our compassion diluted
Our horizons reduced
Our bond has changed
Our dependencies have changed
Our togetherness has changed
Our contributions have changed
Our worries enormous
Our fears growing
Our nerves on edge
Our frustrations intense
Our days are restless
Our nights are restless
Our dreams for a cure
But through all this
Our lives have changed but our love remains
Carpe Diem
I hope they are of benefit