Top of the morning to you all on St Patrick’s Day, 2007.

As we approach mid-night on the eve of St Patrick’s Day, my son and I sit here with two precious friends who have recently emigrated from the UK to Australia. We remember the Irish Orphan Girls who so bravely came to our shores as involuntary emigrants from Ireland and England all those years ago. Australia can be a harsh land even at this time in history. These young girls must have endured much suffering during their experiences of dislocation and resettlement. Those voyages to Australia would have been long and uncomfortable. The experiences of our Irish Orphan Girls are woven into the fabric of our Nation.

You can read a little about experiences of the Irish Orphan Girls and how difficult their life must have been in a Report by The Children’s Apprenticeship Board at Adelaide to the Poor Law Commission Office Dublin dated 27th November 1850. Between 1848 and 1849, twenty ships brought a total of 4,114 Irish girls from the Irish Workhouses to Australia. Eleven ships to Sydney with 2,253 girls, six ships to Pt Philip with 1,255 girls and three ships to Adelaide with 606 girls. In 1849 when the effects of the Irish potato famine of 1846 – 1847 were still being felt, a ship load of orphan Irish children departed Liverpool via Plymouth for Australia. You can read the story about The Pemberton Orphan Ship in the Times: Immigration – Plymouth, January 22 (1850).

So many people from many lands were dislocated and resettled in Australia. The result of those times when there was so much hardship and despair is the wonderful country we enjoy today. Rather than mourn the dreads of the past, let us embrace the result of those years and strive to unite on this day of Celebration, St Patrick’s Day, March 17th, 2007.

To leave you on a happy note, you can explore some of the Irish heritage of Australia in this ancestral tribute by descendants of Irish families who came to Australia to escape the devastation of the An Garta Mor – The Great Starvation better known as, the potato famine.

Although I have written about the Irish Orphan Girls before, St Patrick's Day is such an appropriate time to celebrate the memory of these brave girls and the enormous contribution they made to Australian society then and also as we know it today. I hope the story about these girls has touched your heart, wherever you may be.

Sue Bayliss. Cairns, Australia.

Reflections at the close of day.

Gently, the cover of night creeps around me encompassing my being, my space, my world. Where are my loved ones? Some are close, some far away. Some have walked this earthly path, departing gently through the door of life. What lies beyond that portal? Resting in the soft folds of night, surrounded by the warmth and love of many souls, I wonder when my time will be to make that journey through the mist of time.

Meanwhile I wait in faith, hoping for sweet tenderness in dreams, revisiting all those whom I love and those who love me too. Some are near, some far away. Many are in that other place where I have not yet reached. Someday, we will meet together. We will be souls united in that force of life, that power of the universe, that loving place of peace.

Rest well my friends. May your heart beat peacefully, immersed in the strength of healing love.

Sue Bayliss. Cairns, Australia.

Living with Dystonia and re-creating our lives.

Re-creating personal lifestyle can be full of satisfying and fulfilling activities. This is particularly so when speech is effortful, broken and exhausting, neck and shoulders painfully contorted, or other forms of dystonia are troublesome. Sometimes, our lives are not what we expected at this point in time. Looking for alternative activities and hobbies not only enable us to learn new skills or developing the skills we already have, we may also become aware of a creative, healing power within. This creativeness or re-creation of our sense of self has a powerful effect upon our perception of self-worth.

Allowing our abilities to develop, expressing a part of us that neither our self nor others have been aware, can surprise the most skeptical of personality types! Tapping into an online library or handicraft sites requires skills of computer literacy and research ability alone! However, I do hope the highlighted links to the sites in this article provide you with ideas enabling you to extend your skills or alternatively, explore new skills. This is one way people living with dystonia are able to manage the frustrations associated with daily life.

If you would like to leave a comment about what helps you, living with dystonia, I will reply. Meanwhile, in solidarity and hope let us keep on keeping on together.

Sue Bayliss. Cairns, Australia.

Cervical dystonia and botulinum toxin type B; what happens in the long term?

How often do we reflect upon what may happen in the future as a result of the treatment we presently receive? How much do we know about the long term effects of Botox type B treatment? Questioning our decisions and thinking about possible outcomes in relation to our choices are natural thought processes. Mostly, we have little resistance to challenging thoughts creeping into our mind during those quiet, reflective moments in time. These thoughts are sometimes intuitive, defensive, confusing.

All the above mentioned thought processes lead us toward making informed decisions about health, relationships, quality of life. Together with these cognitive functions we apply trust, enabling us to be absorbed by that welcoming aura intertwining hope and faith. We feel safe, surrounded by reassurance.

Are we prepared to expose our vulnerability by asking our treating specialist’s opinion on something we have read or heard? My personal experience is the more questions I can think of asking during treatment appointments, the more I learn from the answers I receive.

Someone brought to my notice a very interesting brief communication about an article thus leading me off on a train of thought resulting in a list of questions to ask when I go for treatment next week in Brisbane. To that person, I say thank you. Please, follow the link in this paragraph; think for yourself about what the outcome of research does for us. How we are part of the answers to questions being asked in searching for a cure for the different kinds of dystonia. As individuals, we are not alone. We are members of a global team moving forward together, supporting each other along a road of discovery, a future of hope and promise, for ourselves and those who come after us.

Please, leave a comment if you are comfortable doing so. I will get back to you. Wherever you are, have a great day.

Sue Bayliss. Cairns, Australia.

Cervical Dystonia: a pain in the neck!

For your convenience and access to information and resources, each highlighted link in this article leads to a different site. You will be able to find other resources in your country.

Although I have mentioned the use of Botox for treatment of Cervical Dystonia (CD) in previous blogs, there are other articles associated with pain I would like to recommend. Pain can be a difficult experience to describe. Different parts of the body reflect different degrees of discomfort or pain. Bone pain is very different to muscle spasm. Pain associated with circulatory problems is different to headache pain. There are different drugs used to treat pain. Acute pain requires a different approach to chronic pain. Diet is central to all areas of health. Lifestyle can be both seriously affected by pain and is also essential in managing chronic pain.

All the above mentioned variables contribute to how we manage our every day life. The pain associated with CD can be more intense than the tight feeling of spasming vocal cords resulting from spasmodic dysphonia (SD). Arthritis contributes to the pain of CD. So it goes on.

Living with discomfort and or chronic pain need not be a crippling experience. We are not expected to be martyrs, constantly suffering from the ageing experience. Life is a gift to be enjoyed. It is too short to be obsessive about a physical disability. Together, let us move on knowing others share our experiences. We can also share our joy, our friendship, our knowing that future time will provide treatments to cure dystonia in all its forms. The hope of cure in time to come is worth the treatments we now receive to relieve the complex symptoms of cervical dystonia and also the other dystonias.

I hope you have found something here enabling you to feel more confident in making informed decisions about your treatments. Whatever you are thinking, always discuss it with your medical team. They are here to assist us and in many ways, our relationship with treating specialists, family doctors and other health professionals, is reciprocal.

You are welcome to leave your comment or email me at s.j.bayliss@bigpond.com.au and remember we are only a touch type away from each other. Have a great day.

Sue Bayliss. Cairns, Australia.

Faith, hope and … umm … what is that other thing again?

Stress! That is it, S T R E S S. Think about it. We will always have some degree of stress in our life. This is a perfectly natural state and is quite unavoidable. It is the ebb and flow of strength and fragility throughout our life. When we get really stressed out and our stress becomes distress, what is it that actually holds us together? Faith and hope are the two variables we tend to fall back upon. Although as individuals, we probably each go about things a little differently. Some folk choose to do things really differently to most and that is okay. Underlying feelings seem to be much the same though, even when expressed in different ways. Feelings of stress are the effects of strain. This strain may be physical, psychological or emotional. Sometimes, we experience a combination of all three.

Hopelessness! Despair! Depression! All pretty rotten kinds of feelings. Thoughts that sneak in at these times are invariably of the stinking thinking kind, to say the very least. These feelings and thoughts seem to go hand in hand with all kinds of stressors and crises during our lives. It is a natural reaction to seek emotional protection from any state of distress and hope for something better.

Hope and despair are at opposite positions on a continuum with varying degrees of happiness and depression in-between. Most of the time, we fit in there somewhere between hope and despair. When we are feeling the effects of stressful situations, it is hope that gives us relief from feelings of tension and frustration. Hope is the promise of improvement in the future. The promise of hope relieves stressful situations associated with our health, coping with a disability or with any life situation.

There are very strong elements of emotion involved with hope. These emotional elements are what we refer to as faith. Faith is the very stuff we hope with. Evidence of what we can not see but we know within our heart and our mind that it exists. We talk about religious Faiths, the major religions within the world all proclaiming faith in the one true God. Some people call this belief a strength or force greater than themselves. Every evening when we go to bed we do so in faith that the sun will rise in the morning. We believe we will do things we are planning, before the time is even in existence. As children we believe in and rely upon our parents, sometimes on others carers and or family members, to care for us and protect us as we grow. These are all examples of faith and also of hope.

I hope this article is giving you something to think about in your life in relation to stressful situations you may experience. My experience of stress in relation to my spasmodic dysphonia and also cervical dystonia is that I develop a fear of speaking on the telephone and a fear of falling over or not being able to see what is at my feet when my head pulls back from muscles tightening. I do have faith that the medical team working with me will be able to offer on-going relief for me with botox injection treatment, speech therapy exercises and physiotherapy. My hope is that I will continue to live as independently as I can and enjoy my relationships with family and friends.

Would you like to read about other stress related topics such as stress management or any other areas of interest? Please let me know by leaving a comment or you are welcome to email me at s.j.bayliss@bigpond.com.au and I will get back to you.

Sue Bayliss. Cairns, Australia.