As a PDNS my skills are often learnt from clinics from the PWP and their families. Books have a limitation as Parkinsons symptoms are visual in most cases unlike many other neurological conditions. The resting tremor slowness of movement or as with the younger PWP Dystonia. I have had the privilege of attending many conferences while working as a PDNS and teaching in many countries at other times. I come from a Maltese Scottish background and have spent much of my life in Malta. Recently I was invited to teach at the MPDA meetings in Malta. To an amazing reception on each occasion. Teaching Parkinsons in a completely different culture was challenging but in reality the symptoms of the condition are the same world wide and what is missing world wide is education and empowerment from diagnosis.
Living with a long term condition usually means no cure at this time and developing a good QOL and learning to live with the condition. In Malta there is so much want to learn so much enthusiasm to understand what they are living with. A 1 hour session soon develops into 3 hours. There are limited resources limited treatments and no Patient empowerment. The idea of a PWP chairing their clinics is many years away. Even the acceptance of the role of the PDNS is unacceptable in a culture where nursing is seen as a carer and not an educator. PWP don’t need nursing but educating and empowering . They need the encouragement to become independent and to be able to make informed decisions about their but this cant be done unless diagnosis includes the person with Parkinsons and their families. The educating in the UK is mostly lead by the nurses but in Malta where there are no nurses working in this field many PWP are left on their own with their families left in the dark.