Get involved > Spotlight on MND > August 2016 > From an MND Advisor's Perspective

Spotlight on MND


From an MND Advisor's Perspective

I have noted recently a research project in the pipeline about MND and psychological impacts it may have on people living with the disease and that got me thinking ...  I really never appreciated when I first started this position just over 1.5 years ago how important the psychological aspect of care is in relation to MND.  

I feel that as an MND Advisor it is important to reflect regularly on your own practice, as this is one way in which we can continuously improve.  Whilst reflecting, I came to the conclusion that when looking at what people with MND are coping with we have a very challenging job to do!  

They not only have the grieving process that comes with a new diagnosis of MND, but their lives may have already changed with their many losses and anxiety about the losses that may come in the future. Many times I meet clients who are downsizing their home or going through the process of building a home, which may be more suited to what they feel their needs may be in the future.  These are huge decisions and are likely to impact on the person with MND and their family.  How many of us would be able to sell our home whilst keeping our anxiety levels normal? 

There are also the various stages of the grief cycle that people with MND may go through, including denial and isolation, anger, frustration and bargaining, depression and sadness and finally acceptance. People with MND may also worry about their family and how they are coping and are going to cope in the future.

When I look back and reflect on exactly what the person with MND is dealing with, it is sometimes much more than the disease symptoms itself.  I sometimes feel that these issues can impact on their care in many ways.  As I reflect on my practice, I feel that despite my best efforts of allowing people to express concerns, careful listening and support as well as early intervention through  palliative care, sometimes this just does not seem to be enough.

So, if I feel that I am providing the best care possible as a MND Advisor, maybe more research is necessary to work out how to support people with MND in regards to the psychological aspects to allow improved care in the future.

(Photo: Jerry Packer and Pamela Bartlett, MND Advisors at MND South Australia)


Monica Hayes
Interesting reflection but still not voice of one living with MND
Nothing about us without us!
9/08/2016 8:50:48 AM


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