Monday, September 17, 2007

Dystonia: glimpse of a treatment model in the North East of England.

It is with great excitement I visited the North East of England in May this year (2007). My adult son Darren and my elder son’s wife, Jill, traveled with me. We have family living in Whitley Bay. This trip is definitely the most exciting to date. I would like to share my story with you.

Before leaving Oz I emailed ahead via the ADDER site. What an amazing response eventuated from that first contact! I met with Dr Ginge Butler and his wife Verona in the cafeteria at the amazing new Watergate Park Hospital in Newcastle. Over a cuppa we quickly found ourselves chatting about many of our mutual dystonic experiences, even identifying some of our differences surrounding treatment programs.

Following our initial meeting I am most fortunate to have then met Leslie the clinical nurse team leader of the Dystonia treatment clinic at the Watergate Park Hospital. This facility is amazing. The dedication of Leslie and her team to the treatment program for dystonic patients is most impressive. Learning about Leslie’s team of highly skilled nurses actually administering treatment is a surprise for me. This methodology of practice by clinical nurse practitioners must be of immense support to both patients and treating neurologists. Although the nurses give botulinum toxin injections for dystonic symptoms other than for spasmodic dysphonia, a doctor is always available. What amazes me most is the availability of very high quality treatment programs so close to where people live. This is perhaps the area of greatest difference between Australia and Britain.

Although Australia’s population is predominantly in the major cities, from where I live in Cairns, Far North Queensland, I travel a little over 1,600 kilometres to Brisbane for treatment then face the long trip home! Flying is a two and a half hour journey whilst driving is a two day trip each way. Guess what – I fly! One further amazing experience resulting from contact is meeting Professor Chinnery. What a lovely man he is.

Professor Chinnery is interested in my family history of dystonia. We have what we describe as the Venables’ voice because it is thought the ‘funny voice’ came from that part of the family. Spasmodic dysphonia? This well may be! Stories down the generations tell of tremors and strangely twisted necks, bodies and limbs. Some have referred to this as ‘the rheumatics’ or in latter years, ‘the Parkinson’s thing’. Need we be surprised? After all, upon reflection my 14 year path to diagnosis is paved with immense frustration. It is with confidence that I can say to fellow dystonics, you will know exactly what I mean. Yes, some things are intergenerational and truly universal!

It is my hope to meet many of my fellow dystonics when next in the U.K. - September 2008.

Sue Bayliss. Cairns, Australia.

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