MSA Facts and Experiences Annamaria Berger Conductive Enablement

MSA – Facts and Experiences Annamaria Berger Conductive Enablement Ltd CE Ltd 7 March 2015

Introduction Ø What is MSA? Ø MSA Statistics Ø MSA Diagnosis Ø MSA Symptoms Ø Experiences with MSA Ø Questionnaire CE Ltd 2 7 March 2015

What is MSA? “Multiple System Atrophy is a progressive neurological disease, caused by degeneration (or atrophy) of nerve cells in several (or multiple) areas of the brain. ” CE Ltd 3 7 March 2015

Statistics Ø 5 people in 100. 000 Ø 3000 people in the UK Ø Starts ~50 -60 s Ø Previously Syndrome known as Shy-Drager Ø 3 specialist nurses CE Ltd 4 7 March 2015

Diagnosis Ø Clinical Ø MRI scans Ø MSA-C, MSA-P CE Ltd 5 7 March 2015

First Symptoms Ø Bladder problems Ø Erectile dysfunction Ø Feeling stiff and slow Ø Balance CE Ltd 6 7 March 2015

Symptoms Ø Three areas affected: Ø Basal ganglia Ø Cerebellum Ø Brain stem Ø Other problems CE Ltd 7 7 March 2015

Past Participants I. Female Early 1950’s ~15 years II. Female Late 1940’s ~5 years III. Male Late 1950’s ~10 years? 3 years 1 block 1 year CE Ltd 8 7 March 2015

Present Participants Sex Year of birth Year of diagnosis Start of CE CE Ltd A Female 1949 February 2013 B Female 1951 2012 November 2013 July 2014 9 7 March 2015

Question 1 A Ø Urgency to urinate Ø Occasional sharp intake of breath Ø Bad balance CE Ltd 10 7 March 2015

Question 1 B Ø Slowness Ø Frozen shoulders Ø Hand writing Ø Speech CE Ltd 11 7 March 2015

Question 2 A Ø September 2012 Ø February 2013 CE Ltd 12 7 March 2015

Question 2 B Ø 2012 ! CE Ltd 13 7 March 2015

Question 3 A “Progressively very debilitating” CE Ltd 14 7 March 2015

Question 3 B “That it is untreatable and will continue to affect me adversely. ” CE Ltd 15 7 March 2015

Question 4 A Ø Bad balance (falls) Ø Stiffness, slow, awkward, weak Ø Urge and stress need to urinate Ø Speech CE Ltd 16 7 March 2015

Question 4 B Ø Balance Ø Lack of physical strength Ø Loss of confidence Ø Speech CE Ltd 17 7 March 2015

Question 5 A Ø Help with chores Ø Less active CE Ltd 18 7 March 2015

Question 5 B Ø Shopping Ø Cleaning Ø Looking after horse CE Ltd 19 7 March 2015

Question 6 A Ø Yes, but does not stop deterioration Ø Learning safer ways of doing things Ø Less stiff CE Ltd 20 7 March 2015

Question 6 B Ø Very positive experience Ø Strategies CE Ltd 21 7 March 2015

Question 7 A Ø Sinemet Ø A bit better than without CE Ltd 22 7 March 2015

Question 7 B Ø Madopar Ø Seems to be helping CE Ltd 23 7 March 2015

Question 8 A Ø Parkinson’s singing group Ø Horse riding Ø Seated exercises group Ø Nordic walking CE Ltd 24 7 March 2015

Question 8 B Ø Aromatherapy Ø Homeopathy CE Ltd 25 7 March 2015

Question 9 A “I feel more confident that a professional who is familiar with my condition is monitoring my problems regularly and modifying treatment accordingly. ” CE Ltd 26 7 March 2015

Question 9 B “I have not had any falls since starting CE. ” CE Ltd 27 7 March 2015

Useful Links Multiple System Atrophy Trust www. msatrust. org. uk CE Ltd 28 7 March 2015

Any questions? Thank you for your time! CE Ltd 29 7 March 2015