On 2 and 3 November 2017, at the beautiful Japanese gardens in Cowra in Central West NSW, 18 carers of people with MND came together for the MND NSW Link and Learn program. This is a two day residential program for carers of people with MND who live in regional NSW and the ACT and, this year, we were very fortunate to have secured funding to run this program through a Westpac Community grant. At the end of each of our MND NSW education programs we ask participants to complete an evaluation. In the Link and Learn participant evaluation, 100% of participants said that it was a valuable opportunity to meet with other people who know what it is like to be caring for someone with MND and 93% agreed that it provided information so they can plan ahead and be prepared for change. All said that the program met and exceeded their expectations with comments such as .... “this program is a very valuable insight for anyone in a carers role with plenty of learning, laughter and knowledge gained”.

The aim of Link and Learn is to link MND carers so they can listen and support each other during the program and beyond, and learn more about MND, how to support the one they caring for and importantly, to take time out to care for themselves. We had six local guest speakers who spoke on the practical aspects of caring. They all gave freely of their time to present relevant information on communication, swallowing and saliva; nutrition; preparing your home; breathing and MND; services available and living well as MND progresses were all covered. Time was also spent discussing the emotional aspects of caring, bringing the happiness back to your mind, body and spirit, and exploring why caring for the carer is so important.

Pat Duncan from Forbes joined us on day two to share her story on caring for her husband Stuart. Pat spoke about what worked well for them, what she might have done differently and the support she found helpful.

The program was facilitated by Kristina Dodds, Education and Carer Support Program Coordinator, and Susan Riggs, MND Advisor for Western Sydney and Central West NSW.

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