Postcard from Istanbul. Rachael Marsden RN MSc talks about the biggest challenges facing people with ALS/MND in Turkey. Photo courtesy of Rachael Marsden RN MSc.
University of Oxford MND Specialist Nurse Rachael Marsden RN MSc saw the note on the board at the 2007 ALS/MND Meeting in Toronto. Coşkun Özdemir MD, President of KASDER, a neuromuscular disease association based in Istanbul, needed help caring for people with ALS/MND in Turkey.
“We said we would have a go at helping. That’s how it started,” says Marsden.
She did not know what to expect when she arrived in Istanbul. But what she found was a small group of nurses determined to improve the care and quality of life for people with ALS/MND. And, the nurse training program she helped put in place inspired a nation to put plans together to create more than a dozen care centers devoted to neuromuscular diseases including ALS/MND.
Class in session. Nurses learn how to care for people with ALS/MND in Istanbul. Photo: Courtesy of Rachael Marsden RN MSc. Reproduced with permission.
Tsou, A.Y., Karlawish, J., McCluskey, L., Xie, S.X. and Long, J.A (2012). Predictors of emergent feeding tubes and tracheostomies in amyotrophic lateral sclerosis (ALS). Amyotrophic Lateral Sclerosis 13(3): 318-325. Abstract | Full Text (Subscription Required)
People with ALS/MND who get a feeding tube electively have a better outcome according to this study.
Andersen, P.M. et al. (2012) EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS)-revised report of an EFNS task force. European Journal of Neurology 19(3) 360-375. Abstract | Full Text (Subscription Required)
Regular multidisciplinary care is highly recommended for people with ALS/MND according to these recent guidelines issued by the European Federation of Neurological Societies (EFNS).
Türkiye Kas Hastalıkları Derneği (KASDER) Contact | Website
ALS-MNH Derneği Contact | Website