What Do Regional Advisors / Neuromuscular Advisors Do?…..

We keep referring new people to contact the network of Regional Advisors.

What do they do? They do everything, they are trained in all aspects of Neuromuscular Disease
and can help with virtually any problem you have. They are a vital ” go between” the consultants
and specialists so that you do not have to wait months before accessing qualified advice. I was horrified
recently when my GP answered a question with the statement that he did not understand MD really.

In our area the Regional Advisors are called Neuromuscular Advisors and I have had an amazing amount
of help from my NMA.

The current example is that last week she came to help me prepare for my Consultant appointment
in September. The lady stayed three hours and in a relaxed and friendly atmosphere talked me through
everything with plenty of time for rest. I was asked what issues I wanted raised, what questions answered, which specialists contacted, how they can help me and who I wanted present?

This is unprecedented and solves all the normal worries and stress of the daunting Consultant appointment. In
the past I have always misjudged things, misunderstood and gone away forgetting to mention or not
daring to mention things.

Already two specialists have been contacted and both have agreed that I can be referred again. I am being sent
all the pulse oximetry stuff to wear for a few nights, so that they have up to date respiratory information. I have
made a two week “pain diary” which is being analysed already. Lists of questions and issues have been raised. For
once I am all ready. So far there will be four lovely Medicos at my appointment, the Consultant, the Neuromuscular
Advisor, the MD trained Physiotherapist, the MD trained Psychologist

Although daunting this is just vital and so unprecedentedly good.

This is what the Regional Advisors do !