Perception
Do we stoop? Does our facial expression change? Do we sound different? And if we do do any of those things, have we, ourselves, even realised? We spoke to four(!) experts to find out more about perception, including physiotherapist and academic, Dr Julie Jones; Mark's speech and language therapist, Dr Elina Tripoliti; neurologist, Ed Newman; and fan of the show and Parkinson's advocate, Dorothy Salathiel. Our takeaway from this episode? We must exercise more and sing often!
Each week, Rory Cellan-Jones guides us between the laughs and moans in the pub. To read Rory's summary of this week's episode, click here.
Find an exclusive blog post by our guest, Dorothy Salathiel, below.
Guest Biographies
Julie Jones
Julie is an Associate Dean, and Associate Professor in the School of Health at the Robert Gordon University in Aberdeen. Julie Co-lead the North of Scotland Parkinson’s Excellence network. She is also a member of the Parkinson’s UK College of Experts grant review panel and sits on the Research Participation Steering Group at Parkinson’s UK. Within the Parkinson’s Excellence Network, Julie is the national Clinical therapy lead supporting professionals nationally to improve and develop service provision for people with Parkinson’s. [Source: Neurology Academy]
Elina Tripoliti
Elina Tripoliti is a Clinical Specialist Speech and Language Therapist working with the Unit of Functional Neurosurgery, National Hospital for Neurology and Neurosurgery, and a Honorary Senior Lecturer at the Department of Clinical and Movement Neurosciences, Institute of Neurology, UCL. She is a founding member and a Trustee of the Sing for Joy Choir (https://singforjoychoirs.org.uk), , made up of people with Parkinson’s. Elina is a firm advocate of the role of music, singing and dancing in speech rehabilitation. [Source: Clinical Neuroanatomy Seminars]
Ed Newman
Dr Ed Newman studied Medicine at University of Glasgow and qualified in 2002. He undertook a period of research into Parkinson’s disease and was awarded MD in 2009. He was a Clinical Lecturer in Neurology for University of Glasgow from 2008 to 2013. In 2013 Dr Newman completed his higher training in Neurology and was appointed Consultant Neurologist at Institute of Neurological Sciences (Queen Elizabeth University Hospital) and Glasgow Royal Infirmary. Dr Newman is a General Neurologist and has a subspecialist interest in movement disorders such as Parkinson’s disease, dystonia and tremor. [Source: Circle Health Group]
Dorothy Salathiel
Dororthy was diagnosed with Parkinson's 18 years ago and has since been a great advocate for the Parkinson's community, fundraising and research.
Abnormal Perception - by Dorothy Salathiel
In the 18 years since I have been diagnosed, Parkinson’s has unexpectedly opened
several doors for me and I have put doubts aside and walked through them. I’ve
helped run a local Parkinson’s UK branch; taken part in numerous research projects;
done Dance for Parkinson’s with English National Ballet; and been on the trial design
group for the novel EJS ACT-PD clinical trial. But why had I walked through the pub
door into the Movers and Shakers podcast, which was way outside my comfort
zone?
The answer is very simple. I wanted to tell listeners about changes in perception in
Parkinsons because I had found that this is not widely talked about elsewhere, for
example by neurologists. And I think it is important for people affected by Parkinson’s
to hear about it.
Through many years of PD Warrior type exercises and more recently belonging to a
speech therapy group I learnt that Parkinson’s can cause people’s perception of their
movements and of their voice to change. They think they are just as upright as they
have always been when they are not, they are stooped. They think they are talking
just as loudly as they always have when they are not, they are speaking more much
more quietly.
My speech therapist tells people it is like having a gremlin on their shoulder. The
gremlin says 'You're shouting', so they lower their voice. The gremlin says 'You're still
shouting', so they lower their voice further. This can lead in a downward spiral to
inaudibility, which I think is one of the most isolating symptoms of Parkinson’s.
But all is not lost. If you understand that your perception has changed then I think
you are in a better position to do something about it. Soon after diagnosis I
experienced a simple demonstration of the brain building new neural pathways,
known as neuroplasticity. I joined an aerobics class and found myself unable to do a
particular arm sequence. It made me angry that Parkinson’s was doing this to me,
but after weekly practice for 3 months I could do it, and I still can..
With therapies to practice big movements and to speak loudly it is possible with
constant repetition to recalibrate the brain so that ‘normal’ is more upright posture
and a more audible voice.
So how did I do in the pub? It was a very interesting and memorable experience. I
knew I might struggle to remember what I wanted to say and to express it clearly. But
I also realised that I would not really be able to look at notes. Afterwards I wished I
had had a short list of one word reminders like ‘gremlin’
.
Thankfully the podcast will include recordings by experts: a physiotherapist, a
speech therapist and a neurologist. I haven’t heard it yet, but I hope when it’s all
edited together that listeners will find it interesting and useful.
