Our wheelchair project – helping people with MND around the world

Karen Pearce, the MND Association’s Director of Care, blogs about presenting the Association’s wheelchair project at the Allied Professionals Forum, which happened prior to the International Symposium on ALS/MND.

Karen PearceAt the Allied Professionals Forum I had the opportunity to present our wheelchair project, particularly looking at anticipating future needs and the powered neuro wheelchair. The presentation seemed to go well, however there were no questions at the end. In my mind this could mean a few things, either what I had said wasn’t interesting, or it wasn’t relevant or maybe I had covered everything people wanted to know. This felt unlikely to me.

 

Thankfully after the presentation a few people approached me, a couple to ask for our evidence so they could influence the people who provided powered wheelchairs in their country. Another person asked about how a feature of the powered neuro wheelchair could possibly be used if the wheelchair was tilted back. Fortunately she uses wheelchairs from one of the manufacturers we work with. Following my talk she is going to ask them for a demonstration model for her to try – a fantastic example of sharing work that will now hopefully support across many countries.Read More »

The Big Conversation: MND diagnosis and care

The MND Association’s Director of Care (South), Karen Pearce, gives her thoughts on one of the clinical sessions on the first day of the Symposium.

Karen Pearce
Karen Pearce

I have just listened to four really inspiring presentations in the Holistic Care session – co-chairing with Jennifer Armstrong (Lois Insolia ALS Center – Northwestern University – Feinberg School of Medicine).

It struck me that so much of what we do is based on conversations, the ability to communicate in a sensitive way. The session highlighted how important it is for health professionals to have the skills to talk about very difficult issues early in the disease progression and to also work with the communication difficulties so many people with motor neurone disease (MND) experience.

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