Experience matters

When I look back 5 years to my written reflections, I see that I have said to myself “The best thing to do with a bad experience is to make use of it!”, and I don’t think I’ve made a bad fist of taking my own advice.

Very early on I drew on my storytelling background and created “Sorting the Sock Drawer” a one-woman show that intertwines a traditional style folk story with my personal experiences of having Parkinson’s. The idea was to share the things that have made life easier for me e.g. bamboo socks, an electric bread knife and lots of exercise and also to help those who don’t have the condition to understand what it feels like. Gratifyingly, its been well received at every performance and the positive feedback I get is now in itself something that makes life better for me. I have found that people with Parkinson’s have a great capacity for humour and the show reflects this, not to trivialise the impact of PD but as a way of keeping positive, everyone feels better for a bit of laughter.

I did lots of internet research in those early days and very soon found out that many people with Parkinson’s have a problem with their voice. The thought that the condition would steal my voice while I still had lots to say terrified me. Worse still recommendations were to exercise your voice as soon as possible to avoid problems, but there was no way of getting any therapy as there appeared to be nothing wrong with my voice. I felt a group focussing on using the voice would be helpful and worked with the local Parkinson’s Uk service development officer and SLT team, here in Cardiff and the Vale of Glamorgan to set up and lead “Live Loud!” a fortnightly group in Cardiff dedicated to the use of the voice. Now nearly 3 years later the idea is being rolled out more widely.

As I was researching I realised that many people with Parkinson’s did not know a lot about their condition and I started to think about Patient Education. I wondered if there were good models elsewhere and applied for and was awarded a Winston Churchill Travel Fellowship to travel to USA and Argentina during 2017. I wouldn’t have done that if I hadn’t had my “bad” experience! I hope my report might have some positive impact, and help to move the “dinosaur” that is the NHS.

Currently I am working on a new idea, bringing together storytelling, personal development and creative activities to help those living with a neurodegenerative conditions regain their positive self image. When someone tells you there is something wrong with your brain its a blow to your very self. The pilot is called Slow Motion “SELF”ies , its hosted by Beyond the Border International Storytelling Festival and supported by The National Lottery Community Fund. Sessions will be in Cardiff and Swansea in the Autumn, please get in touch if you are interested.

All in all not a bad fist full of activity!

A “Gale” of encouragement!

Everyone needs a motivator to tackle the difficult jobs we face. Mine came on Friday afternoon in the shape of Baroness Anita Gale of Blaenrhondda, who had kindly offered to meet me to talk about the report of my Winston Churchill Travel Fellowship looking at Patient Education in the field of Neurodegenerative conditions. Baroness Gale has a long held interest in Parkinson’s and is the co-chair of the Parliamentary Parkinson’s Group and with her experience of influencing change had some excellent suggestions for getting my report noticed, and hopefully read, by those who can make changes. “You have to keep chasing!” she recommended, so now I’ve a long list of follow up e-mails to write as well as a set of promotional tasks.

The Fellowship took me to the 10 states of USA over 6 weeks and to Buenos Aires and “Y Wladfa”, the Welsh heartland in Patagonia, Argentina for 3 weeks. The award is a Travel Fellowship but in essence the experience was all about the people I met along the way, patients and their family carers, academics, clinicians, third sector workers, art in health specialists and members of the public who helped me for example by swiping my New York subway card for me to get me on to the platform and then when the train arrived, gave me their seat! The report tells you all about my official findings and conclusions but in later blog posts I’ll tell you more about some of the inspirational people I met.

The issue of motivation comes through strongly in the report. Loss of motivation can be an actual symptom of a neurodegenerative condition so its important for those connected with patients to provide encouragement to eat healthily, exercise, get the latest information and work on lifestyle issues as well as following medical recommendations. For me an exhortation to “keep chasing” to get my messages heard was really helpful and to know there is someone who may be able to help a big boost. Thank you Baroness Gale.

5 Years On

Good company in a journey makes the way seem shorter. — Izaak Walton

5yrs on

5 years ago I was diagnosed with Parkinson’s. At the time I started to write about my experiences and feelings (more of those early writings in later posts). I considered a Blog but felt, at the time, that there were so many others with years of experience of living with Parkinson’s, what could I contribute? Now 5 years down the line and with 4 substantial projects to report on (more on those to follow too), I have got some things to say, so I am launching PEPtalk.

PEP stands for lots of things:-

Personal Experience of Parkinson’s – there will certainly be some of that. Sometimes the smallest things make a lot of difference. It’s important to share, though I won’t be recommending anything just reporting.
Parkinson’s Education Project – I pick up lots of information, from many different sources, and will pass on useful nuggets
Patient Education Posts – I’ll pass on the experiences of other patients
Patient Eirwen’s Perspectives – Musings on some of the wider issues around living with a life changing diagnosis

I could probably find other PEPs, however what I hope it won’t be is “preachy”

If someone were to offer me a wish to mark the 5 year point, assuming I can’t have a cure, I think I’d go for “a day off”. Peskilential Parkinson’s comes with a wide variety of inconsistent symptoms, todays’ crunkey hip, curly toes, tingly arms, croaky voice etc etc might well be fine tomorrow and be replaced by poor walking and a complete inability to fold clothes. There is much that one can do to ameliorate some symptoms, but there never seems to be day when all symptoms are absent. A good night’s sleep and a day off would be great.

For today though on top of the daily exercise routine to maintain reach and flexibility, on the list of tasks to lessen symptoms are:-

Exercise while upright to encourage normal gut action and avoid constipation
Leg exercise to avoid puffy ankles in this warm weather
Ensure sufficient fluid intake
Keep up vitamin D levels
Take part in some social interaction to use the voice

Instead I think I’ll take a walk with my partner round our pretty village, have a chat with any neighbours we meet along the way and stop for a half pint of the local’s guest ale to be consumed in the pub garden while we sit in the sun. It’s just a matter of perspective!