Multiple System Atrophy

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MULTIPLE SYSTEM ATROPHY

It scares you, I know

These feelings that you feel

A churning inside

The turning of a wheel.

 

You were always so good

Treated others so kind

So why does this happen

The key that unwinds.

 

I swear I know not the answer

I pray for a cure

I pull in support

Just like a flashy fishing lure.

 

I ask everyone to help

I speak of this every day

I will spread news everywhere

This terrible disease MSA.

 

I know how you are feeling

You feel so all alone

My brother found those days

When the clouds were all that shone.

 

You are not alone I swear

You are not all by yourself

I am with you heart and spirit

Praying for your health.

Written by,

Terry Shepherd

4/25/2015

 

10 thoughts on “Multiple System Atrophy”

  2. Hello my friend.I think this may be the last time that i message you Terry. things are going downhill so quickly .I will keep fighting this terrible,cruel thing inside me for as long as i am able,but i know this thing is winning the battle and i just feel so tired all the time.My wonderful angel Marilyn still cares for me around the clock without a break or thought for herself,even when she herself is unwell, she will not leave me.I know the battle has taken a terrible toll on her and my children ,so i fight for them,but i know i wont win.I followed your struggle with Al and marveled at your strength love and resiliance,but also saw the toll this thing took on you Terry.I hope that someday in the future there will be a treatment and at last a cure for anyone that has to face this cruel and spiteful disease,that destroys you, and takes your life away bit by bit. You know the type of nursing i have to have dressing me feeding me ;bathing me making sure i take all my medication on time of which there is an immense amount.My angel cares for my toilet needs trying at all times to allow me to have a bit of dignity.My hands and legs no longer work,and my muscles all over go into snakelike spasms over which i have no control.I have severe tremor on my right side and lose control of my bladder and bowels.My head leans to one side and my speach is so weak its mostly inaudible yet inside me through all the pain and although my brain is dieing i can still feel and know everything that is happening to me.I feel locked in and helpless. My heart and breathing are affected and i feel so weak.You know all about this through your experiences with your beloved brother Al.I hope you dont mind me writing this,its just i see my Marilyn suffering and struggling exactly as i saw you do with Al.I have had someone else write this for me under my garbled instruction. I know it wont be long now,but i will fight to the end.I dont fear the end and if there is a higher presence i will find out once and for all,good or bad.I thank you with all my heart for the kindness and patience you have shown me and i am very honoured and proud to be your friend.We think of you always and our hearts are forever yours.Iwill live now only for my wonderful wife and my incredible children.Goodbye my sweet Terry and may your God keep ,protect and love you for the Angel that you are. MICHAEL

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    • Thank you for being so supportive though my brother’s journey. I will do what I can with the power given to me by God to help this disease be cured. We have lost way too many people from this. To me it is worse than cancer. Doctors are familiar with cancer. There is a degree of certainity how much longer one has to remain . I am not downsizing cancer. It is a serious disease also, but hardly enough know about MSA so we sit and hope and pray

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