Wednesday, April 4, 2007

Spasmodic dysphonia and cervical dystonia: staying safe at a time of threat.

Hello to you all. Thank you all so much for so many emails and SMS messages. Together with the rest of Australia's East Coast population on Monday 2nd April, we acted as soon as we heard about the possibility of a tsunami. I have started to answer your many emails but my hands cramp up before I get through too many so decided to write something here.

I would like to say how deeply we feel for those people who are surviving the tsunami in the Solomon Islands. We are so sorry for their loss of loved ones and of homes and all that goes with such a terrible disaster.

On the morning of Monday 2nd April my son Darren was out walking. He noticed there were many more vehicles than normally travel on the roads and seemed to be driving above the speed limit. It was about 9.10am. As he walked passed someone's house, a woman called out to him saying there is a tsunami coming, due about 9.30am. Immediately following that, someone in a vehicle slowed down and called out to him saying he had better get home because there is a tsunami approaching.

Darren immediately ran home and up our driveway calling out to me, tsunami, tsunami. He immediately called our very old dog to the car, grabbed his wallet while I quickly phoned other family members in low lying areas close to the coast. My voice would not work so all I could get out was the word tsunami. Fortunately, they realized it must be urgent and took immediate action. We found our very dear but aged cat in the bottom of a wardrobe and tossed him in the car. As we went out the door I grabbed my handbag knowing my purse with cards etc was in it.

Making our way out of our street brought to our attention the number of vehicles whizzing by. We headed further up the side of the hill where we live to my daughter's place and waited there. Fortunately, we were spared any danger however, our university people actually video recorded a series of three small waves that came in at the Yorkies Knob Marina. The waves were not large enough to do any damage at all but served as a warning that Australia is indeed at risk of such an event.

I have since thought about what such an emergency means to me. The first thing I recall was checking with loved ones that they were aware of the risk. I phoned two people from our home phone, the others I phoned from my mobile as we drove out. The second thing I recall was the sense of trying to stay calm and act rather than react. This action proved to be a saving grace.

Had we reacted and fled to the Tablelands we would have been caught in bumper to bumper traffic trying to leave the coast. The immediate need was to reach higher ground or onto a high floor of a nearby building if possible. We live at Edge Hill in Cairns, a suburb that derives its name from just that. The edge of the hills of Whitfield Range. Driving up the hill was our closest and safest area to be. I remember calling out to my neighbour (with my funny voice that was quite an achievement!), checking they were okay and telling her where we were heading if they wished to follow us. They appeared to understand me!

Affected by the strangled, forced voice of spasmodic dysphonia together with the painful twisted muscles of cervical dystonia, both made instantly worse by sudden stressors, I felt so vulnerable in a time of threatened harm. It was difficult to speak to anyone but I could not ignore the need to check that family members were aware of danger. Walking was difficult and dangerous as the spasming muscles drew my head back and to the side. I could not see where I was walking and needed to feel for the steps, and possible objects in my way, with my walking stick. All of this brought to mind the need for awareness about a plan of action in event of emergencies.

We live in an area where cyclones are a constant threat during the monsoon season. Preparation for emergencies prior to the cyclone season is a way of life. We prepare cyclone kits containing food, candles, torches, first aid kit, water, blankets, and other items for emergency use.

The emergency just passed is similar but there was no time to grab any heavy 'cyclone' kit. From this time on, we will keep a smaller kit in the boot of our vehicle. This kit contains water, a small amount of emergency dry and tinned rations that can be changed weekly on shopping days, very basic first aid container and a change of clothes and shoes for those in our household. Medications are now kept in a central place where they can be swept off the shelf into a plastic bag at a moments notice. This may sound like an over-reaction. However, it gives me a sense of security knowing we can immediately get into the car and go. We never allow our fuel to go below a quarter of a tank which always gives us enough to get to safety.

We are safe, well and very thankful for being spared what could have been a dreadful disaster.
I will continue to answer emails and SMS messages over the next few days.

Sue Bayliss. Cairns, Australia.


Anonymous said...

Hi Sue: I too have both spasmodic dysphonia and cervical dystonia. I am 43 years old and live in Washington State about 30 minutes south of Seattle. Has botox helped you? It has helped me, although my last injection on 10/1 seems to have hit me harder than usual; it was the first time that I had both my neck and vocal cords injected at the same time.


Sue Bayliss said...

Thank you Catherine for sharing your experience.

Yes, good old Botox is helping me a great deal! Know what you mean though. Treatment sure can 'hit hard' sometimes.

When my treating neurologist injects me he gives the vocal cord injections on the Monday of treatment week and the cervical dystonia injections on the Wednesday. Although, having said that, on two occasions my voice and also my neck and shoulders were so bad that he gave both lots during the same visit. That is not the norm where I go (The Royal Brisbane and Women's Hospital)because the spasmodic dysphonia and other forms of dystonia are treated in different clinics - one floor apart!

Do you have your treatment in Seattle? The centre there sounds to be very good. In Australia we need to travel so far for treatment that some people get to the stage where they wonder whether to continue or not.

For me, the relief obtained from treatment is better than the pain and also the difficulty of living with such strained, effortful speech.

Hoping to hear from you again, Catherine. Wishing you all the best for on-going treatment.

Regards, Sue B.