Acquired Nystagmus and Oscillopsia Forum

Notes from the May 2021 meeting
Notes from Adults’ AN and Oscillopsia Forum – May

Thank you to everyone who joined us for the Nystagmus Network
May Forum for Adults living with Acquired Nystagmus and
Oscillopsia. It was especially nice to welcome new friends from
the USA.

Thought processes
Thanks to Patsy for kicking off a discussion on how AN seems to
have affected thought processes. The following is a summary of
comments: processing is slower, my short-term memory is
affected, I get brain fog, I feel distracted, my mind feels less
nimble, I get information overload, I feel less confident, I lack
concentration. All of this can lead to a loss of one’s former self.

Things that help
Gentle exercise, low impact weight training, deep breathing,
swimming, gardening, Tai Chi and walking were all suggested as
helping focus the mind as well as energise the body.
Getting lost in a good film or TV programme or a repetitive
activity like weeding can also help.
Eye exercises were discussed briefly with some keen to give the
10/10 letter grid a try.

Various members of the group had tried prisms in glasses or
sunglasses, either to accommodate the null point, right across the
lens or base down prisms to alleviate oscillopsia.

Having enjoyed each other’s company and shared our
experiences, we ended with a chuckle, contemplating whether

slices of cucumber over the eyes, as recommended by a well-
meaning family member, might actually prove to be the miracle
cure we’re all waiting for. Shall I ask Professor Harris?!

Welly Walk
If you fancy enjoying some time outdoors with friends or family,
or just the dog, why not take part in the Welly Walk for
on Saturday 19 or Sunday 20 June? It’s a bit of fun
and, we hope, will help raise awareness of nystagmus.

The Nystagmus Network is a membership organisation. Trustees
chose this model for the charity to create a virtual nystagmus
community. Being a member means that you are part of a patient
group and we can make our voice heard in clinical, welfare and
research arenas.
Thank you to those of you who are already members. If you are
not a member and would like to find out more, please visit the
membership page of our website.

Thank you.

Date of next meeting: Wednesday 16 June, 5pm

Till next month, best wishes



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