'OUR SILENT BATTLE JUST GOES ON AND ON'

THIS MONTH OF MARCH MARKS THE 'NATIONAL DAY OF AWARENESS FOR MULTIPLE

SYSTEMS ATROPHY".

As a Dedication to those suffering from this Horrific and Devastating Disease, including myself

I decided to write a poem in their honour In America, there is a lot more support for this illness than we have here in Australia

However,here in Australia, we don't have even a Foundation. I am hoping to raise money from the sale of the Two Children's Books that I have just written and are to be published and a A Book of My Best Poems. I am also hoping to get some financial assistance because I am going to be a guest on one of our Current Affair Programs.

I hope this is successful because I wanted to try and have an establishment for people over 50 built to help people with not only this, but other rare Diseases, who cannot afford private nursing.

When this happens, people my age have to go into a Nursing Home where the very old men and

OUR SILENT BATTLE JUST GOES ON AND ON

A lot of us are lucky in our lives because we’re healthy till we’re old

All we ever suffer from in life is the occasional bouts of coughs and colds

That terrible migraine that makes us so sick we’re up half the night

Those viral infections that appear out of nowhere, that make us sick for days.

Yes, all of these things can leave us feeling so bad we have to visit our G.P.’S.

But, one day like me, you find you have symptoms like you’ve never had before

Things that are not clear to understand, even your doctors don’t know what’s wrong

It could be this or that is said many times as our symptoms are getting worse

Let’s get more tests done and more scans to see what’s making you so ill.

We wait again thinking “what can it be? Could I have the great Big C inside me?


In the meantime we talk to our Psychiatrist about our depressed state of mind

We visit a Neurologist who does his tests to check what might be changed

Then the day we’ve dreaded finally arrives and we each have to face the truth

We’re told that from clinical signs, blood tests and scans that were done

We’re suffering from a very rare and incurable Neurodegenerative Disease.

We look into our Specialist’s face to ask what this disease is called

He gets serious and says “Multiple Systems Atrophy, in short MSA"

After days of waking up with painful stiff, rigid legs and arms every day

Constantly losing our balance,having more tremors than we can count

It’s making sense to our Neurologists, now we are praying it will go away.

I’ve found out that we are all different with symptoms of this Disease

It takes over our bodies, giving us difficulties making it hard to cope

The blurring in my eyes is worse, I’ve had my glasses changed many times

Wearing pull-ups daily helps prevent persistent incontinence problems of mine

I find this distressing I would rather wear much more pretty undies instead

I wear a bag because my gastro-system won’t work as well as it should

I wish I didn’t have to wear a bag every day it really is depressing to go through

However, this was something that saved my life so I guess wearing it now is good.


It’s so embarrassing going out in public, I have to hide the tremors in my hands

I’m afraid to open my mouth to speak, my speech is slurred, people don’t understand

The MSA which is responsible for these symptoms destroys my life day by day

I wish things had turned out differently more than you could possibly know

I don’t how much time is left only that as each day passes I feel it disappear

For all who are suffering from this rare neurodegenerative and Nasty Disease

Just think how much better our lives would be and happier too, my dear friends

If we could have been with our families and not endured this illness every day

Lying in bed each day I think about better pathways we could have been on

We can't give up on life we’re in this together forever to the end we’ll stay.


Comments 18 comments

Lisa HW profile image

Lisa HW 5 years ago from Massachusetts

Sincerest best wishes in your efforts to create awareness and with your own struggle. (Nice to see you on here and writing.)


BEAUTYBABE profile image

BEAUTYBABE 5 years ago from QUEENSLAND AUSTRALIA. Author

Thank you very much for your lovely words Lisa.

I think that I will have a bigger struggle with my endeavour to try and raise funds to build an establishment for people who can't stay at home any more to look after themselves.

So I'll be pretty busy now, so I hope I don't wear myself out to much that I get sick again. Take care and thanks again. Beautbabe. x


pbower 5 years ago

Hi Pam, Found you on here! I want to correct you and say MSA Awareness Month, is not National... but International. :)

http://www.MSAawareness.org

Best wishes,

Pam in Canada


Ginny Podesta 5 years ago

I too have MSA. It has changed my life in so many ways and I try to stay focused on what I can do rather than what I can't. How wonderful that you are so talented and can continue to write and work towards helping with this disease. That must give you a great deal of satisfaction. Keep up the good work. Ginny


Margot 5 years ago

I would love to know more about your childrens books please? my mom had msa and passed away in July 2009. I have 2 children, her grandchildren whom she loved dearly. i'd love to possibly buy your books. my brother has recently moved to Perth and could get them for me.


BEAUTYBABE profile image

BEAUTYBABE 5 years ago from QUEENSLAND AUSTRALIA. Author

Hi Ginny,

I'm so sorry that you too are stricken with this terrible affliction. I am so pleased to see that you have two children. I would love to have been a mother also but I got so many other problems. Before I was hit with this horrible disease, I had as you have probably seen in my hubs a host of all other illnessnes.

I had a wonderful singing career and a medical secretary before this thing interfered little by little with something new showing up all the time. Is that how it was with you? Did you just get different changes, subtle at first and then they got more and more noticeable like those tremors that start off with a little shake and end up as I found out recently now they can lead to a seizure.

If you wouldn't mind Ginny, I like to talk to you on a more personal level through the private line. If you write to me then I will return on my personal line. I would like to find out about your life and just let you know about mine. I love that we met like this but I feel that Australia is so far behind with MSA Technology that I want to do what ever I can to catch up and also help other to as well.

I hope that I will here from you very soon. Beautybabe or Pam xx


BEAUTYBABE profile image

BEAUTYBABE 5 years ago from QUEENSLAND AUSTRALIA. Author

Hi Margot,

I was great to hear that you are interestd in my books. Could you please contact me through the personal e mail section so that we can talk more privately.

I would really love to talk to you some more about this.

Take Care & God Bless.Love Beautybabe. Pam


rouxsgirl1963 profile image

rouxsgirl1963 5 years ago from Maryland, USA

Just wanted to say thank you for this posting. It opened my eyes up to a condition I was not familiar with but one I can truly sympathize with. I wish you the best in your campaign to raise awareness...but even more so in your own battle with this condition. Thoughts and prayers are with you.


Hello, hello, profile image

Hello, hello, 5 years ago from London, UK

Hello wonderful lady and no words are good enough to express the sorrow reading your hub. Sometimes language can be so inadequate. You got my full admiration and respect. Is there possibility to further the sale of you books? Please let me know. I am looking forward to more hubs to read and also how you are getting on. God bless.


BEAUTYBABE profile image

BEAUTYBABE 5 years ago from QUEENSLAND AUSTRALIA. Author

Hi there Hello Hello,

The books are due to be published around Easter, not sure of date yet. What I can tell you is that I have a website called "Books through a Child's Eyes which will be available and my books will be advertised through Amazon and advertised globally, so you will see them, all over the world.They will have my name Pamela Woolford and not Beautybabe.

The names of my books are "An Enchanted Garden" which is a fairy story. The second one is called "The Little Pig That Ran Away To Save It's Bacon". This is a learning book as well as a story for boys and girls and has a moral at the end. I have been told by my Publisher that she thinks it is just as good as "Babe" and could also be a good movie. Imagine that what a legacy to leave?

I don't know if it is or isn't I just hope the kids get a lot of pleasure from reading both of them. I'll be leaving up to date messages in forum when publishing time is near. God bless and take care. Pam


Pamela Kinnaird W profile image

Pamela Kinnaird W 5 years ago from Maui and Arizona

I hope you are doing better this week. You are an inspiration to many. I can only imagine how hard some days might be for you. I will look for your children's books on Amazon.

Me ka aloha pumehana, Pamela K.W.


BEAUTYBABE profile image

BEAUTYBABE 5 years ago from QUEENSLAND AUSTRALIA. Author

Hi Pam,

Thank you for your lovely comments. I apologise for not getting back to you before . I have just spent two weeks in hospital with severe asthma and bronchitis. I have about two weeks now and both of my books will be published. It is very exciting feeling isn't it waiting for your first published book.

My Publisher told me that usually children's stories are the hardest to write. I have written five children' story books in under twelve months which they are going to publish. I will be also advertising with Amazon for world coverage for "An Enchanted Garden" and "The little pig That ran away to Save his bacon".

The next one which isn't finished being illustrated is called "Zeppo the little dragon with the big problem. I will let you figure out what his problem might be. I see you love to write childrens stories. One in particular about two feral cats sounds like something that I would like.

I must admit I am not much of a drawer or painter but I have studied singing and when I started to have my breathing problems when I was singing, my GP sent me to see a thoracic specialist. To ascertain what the problem was,I had to have a lot of tests carried out.

He told me that I have now more than 70% restricted lung capacity. I was shocked, my lungs would have been a lot worse if I had been a smoker. I never did like thought of smoking and being a singer I always thought it would damage my voice too much. I was in hospital with severe asthma which is something I havent't had for nearly thirty years.

I love writing now that I have started and I probably will not be able to stop myself which is alright because I really love it when something just jumps in my head.

It was wonderful seeing my name as the author on my first book cover on the Proof Copy. I can't wait for the official publishing. I will keep HP's up to date as much as I can about the books I write. Richard and I are going on a cruise around both islands of New Zealand in November and I am really looking forward to it.

Take care and God Bless BB Pamxx


AliciaC profile image

AliciaC 5 years ago from British Columbia, Canada

Hi, Beautybabe. After reading your good news in the forums and learning that you had MSA I wanted to comment on your inspirational hub and your wonderful news about your children’s books. My mother suffered from another rare and serious neurodegenerative disease – amyotrophic lateral sclerosis. I sympathize with what you’re going through, and I also admire your wonderful attitude and determination and your generous plan to create an establishment to help other people with neurodegenerative diseases. I’m so glad that you have the publication of your books to look forward to – this is very exciting news!


Ricky S 5 years ago

Congratulations Pam, you are an inspirational human being and congratulations on your first published book which I know will be a huge success. Reading the comments here has been very inspiring. Much love Ricky


RandomThoughts... profile image

RandomThoughts... 4 years ago from Washington

You are a courageous and selfless women and you inspire me to be the best me I can be...Thank you for sharing your struggles and your triumph, your heartache and your love. You touch more people than you will ever know...


BEAUTYBABE profile image

BEAUTYBABE 4 years ago from QUEENSLAND AUSTRALIA. Author

Thank you so much Alicia. I am sorry I am getting back to you so late. I have had my first book signing and it went quite well. I need to sell a lot of books yet if I am going to get this building off the ground, any ideas.

Pam. x


BEAUTYBABE profile image

BEAUTYBABE 4 years ago from QUEENSLAND AUSTRALIA. Author

Thanks for you congrats. I am humbled by what you say but really I am just doing what I have to to stop going stir crazy as I can't work anymore.

I have now written and had published three childrens books. Love Pam x


BEAUTYBABE profile image

BEAUTYBABE 4 years ago from QUEENSLAND AUSTRALIA. Author

How kind of you to say these things about me. I hope also as you do that more and more people read my story and take a leaf out of my book and be inspired to do the same as me. It does work, I have proved it.

Love Pam x

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    Comments 2 comments

    Richard Woolford 5 years ago

    As the husband of this woman I am in credibly proud of what she has achieved. Who would have thought that a woman with a terrible ternimal desease would become a published author.


    BEAUTYBABE profile image

    BEAUTYBABE 5 years ago from QUEENSLAND AUSTRALIA. Author

    My Darling Richard,

    Thank you so much with all my heart for these beautiful words that you have written to show how proud you are of what I have achieved, especially with my writing.

    I am just as surprised as you to see me become an Author of not one but now seven in total children's books.

    It hasn't been an easy journey for me and you would know this more than anyone. You have seen the nights that I have sat up because I suffer from severe Insomnia and also have excruiating pain some nights making it impossible for me to get a decent nights sleep.

    You have supported me through all of the time that I have been sick and even more so now that I have just published my first book.

    Thank you so much my love for all your love and support during this time. I have so much to be thankful for.

    I would also like to add how very proud I am of you for taking part in the "Rio Tinto Bike Ride" with regard to conquering and finding a cure through research for Cancer.

    God Bless You My Love

    Your Loving Wife, Pam xxx

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