diagnosed Ftd. Dai board member. Married. Brisbane Australia. Advocate. Facilitator and host, Poet
Advocacy work is not hard to get into all
Persistence is paramount if you are to stand tall
Advocacy involves standing up against mainstream
If you are told “NO”, simply say what do you mean
Experts are experts in their own field, and so it should be
We are the only real experts in dementia you see
Give presentations with your head held high
People will give you credence and sigh.
Tell one and all your story
warts and all, in all of it’s glory
The hardest part of all is the first step
I feel honoured by people who tell me what a good job I am doing every day
Making a difference to people living with dementia in so many ways
My wife often says it is recognition for all of the work that I have put in
I keep saying it is not about me as I see people’s faces light up with a grin
What I do concerns everybody who is living with dementia and STIGMA for them is a struggle
Reach out to someone who is in that position and needs a cuddle
Thank you for all of your kind words and messages which encourages me to go further and harder.
Tell more and more people, this is what I wish for
Devotion with passion to a cause is a powerful tool
We will no longer be seen as a fool
When life gets you down and things look grim
Always find something that you will make you at least grin
Positive attitude breeds a positive attitude
You will be filled with gratitude
At times being positive can be all to hard
Sometimes I criticised for being a card
I understand and respect people’s wishes as that is their choice
Unlike many, being positive means people hear our voice
I know that dementia will eventually cause me to die
Until that comes why should I be shy
I was bought up with Honesty is the best policy
Always tell the truth consciously
When I was young it was often met with “Tell me why”
In those days two words that come to mind are introverted and shy
At times this caused blame to be shifted my way
As I grew older a man’s handshake was his word
Dishonesty and lies gives one credence to be heard
Lies are now an acceptable part of society and every day life
Majority of which never get into strife
When I feel strongly about something I make it my passion
Sometimes it may not always be in fashion
We meet each week to talk about anything at all
Like minded people walk away feeling happy and ten feet tall
Every week we discuss all things that make us laugh a lot
A serious lot we are not
What the group does for one and all can never be measured
For me all memories will always be treasured
Talking to people from all corners of the globe each week
A promise made to the great man is what drives as attention I do not seek
When you are first diagnosed there a feeling of being all alone
At the time you think it is set in stone
Never listening to loved one’s or those who care
Wishing to avoid telling anyone and the stare
Do not tell ” Oh you poor thing “
Your false sentiment has a familiar ring
Pity is something I do not need
You know nothing about it even though you believe you are doing a good deed
Stigma Stigma makes me sad
Even makes some people mad
To be positive all the time takes courage and an attitude of never giving up.
To have one hundred doors closed in your face makes you doubt and wonder what’s up
Persistence is the best resistance I always say
To give in no matter how depressing means a price for which you will pay.
People out the need to be informed for us to succeed
Only then can people with dementia feel as if they have been freed
What drives to keep going every day
A positive attitude is the only way
I have been taught by the best
Never give up, never give best a rest
Always swim up stream
When everybody swims down, make that your dream
Shake ’em up, tell them they are wrong
We are the experts, always stay strong
When I was first diagnosed stigma was hard for me
People disbelieving what they were told about me
You are to young
This would leave me highly strung
Increased anxiety, frustration and silent anger
Especially coming from a stranger
You don’t look like you have dementia I would hear all the time
Dementia episodes meant I have to tow the line
People do not realise how much stigma hurts each one of us
At first you do not want to make a fuss
When your mojo has gone all is not lost
For this there is no cost
Inspiration is now on it’s way
Then regular posts will be here to stay
The sun still rises and sets each day
Boredom and mixed emotions have been replaced with elation
A challenge has been set for creation
Dementia, family and friends all here to stay
carmodym59 