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Dr. Shadi :   Please tell us about yourself. 

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Susie Price:   My name is Susie and I am 52 years old. I was accidentally born in Surrey which is very embarrassing for someone who is a Yorkshireman. Fortunately, I was raised in Yorkshire from the age of three prior to which I had lived in Aberdeen and Luton following my father who was training to become an orthopaedic surgeon. I was diagnosed with type I diabetes aged at 13 months – depending on what mood my mother is in when asked, I was the youngest surviving diabetic in England, Europe and the world. Whilst I didn’t let this rule my life it has formed a significant backdrop to it, particularly as concerns my attitude to Parkinson’s Disease.  As a small child, I spent the significant time with my uncle, aunt and cousin in the States - New York City and Long Island and at 13,  I was sent away to boarding school in Whitby, on the north-east coast which, unlike many of my contemporaries. I really enjoyed. I refused to go to university because I felt nobody had asked me if I wanted to go and I felt processed. On leaving school at 18, I worked in a pathology laboratory for nine months counting sperm - a really cool first job I have always thought.  Following that I came South first to a secretarial course in Oxford and then, I became secretary in the City. I was 19.

 

At 25 after several permanent City jobs and numerous temporary ones I found myself temping for major accountants Ernst & Young.  After three months I was offered a permanent job primarily so they could send me to work in the newly liberated Eastern Europe which they were busy privatizing.  It was fascinating –  I did some traditional secretarial work but I was also responsible for:

 

• installing satellite telephones, including explaining to the man standing on the roof exactly where I wanted the satellite dish in his language be that Polish, Czech, Russian or waving my arms around;

• finding something to eat that wasn’t a piece of leather /(bifstek) and soggy chips the staple diet in Poland and the only thing on the menus of all the restaurants with a 40 mile radius of where we were staying

•  importing computers into the country, requiring three days in customs before I discovered that you had to bribe the guy to move up the queue;

• software training through translator which required me to learn the menus for Word and Excel off by heart because my students were using the software in their language - Polish, Czech and Russian and I had to show them where the functions were.

 

At the same time, I was teaching the secretaries in the newly created Ernst & Young Eastern European offices “the E&Y way” when it came to branding, document formatting and layout.  Unfortunately, I did this job so well I made myself redundant because these indigenous secretaries were just as capable as me of working in the client’s offices and much cheaper. Ernst & Young weren’t sure what to do with me on my return so they sent me to Abu Dhabi for six months to think about it.  

 

I randomly chose marketing – they were beginning to massively increase the teams. I quite enjoyed it initially but after three or four years it became quite repetitive so I moved firms …  to another firm of accountants finance and when I got bored of them, I went to work for a firm of lawyers … they pay more.  At my second law firm, I realised marketing lawyers was probably not for me … I just couldn’t get excited about increasing partners earnings so their wives could afford the gold-plated taps in the new bathroom!  Yes, I had become very cynical and I thought there must be a more interesting if not necessarily an easier way to make a living. 

 

One of my hobbies, in fact,-  my only hobby if you include photography as part of the package, is travel. Since I started to reap the benefits of increased pay by working for lawyers. I had been traveling extensively in Central Asia (every country ending in stan), Ethiopia , Azerbaijan and Georgia.  If I couldn’t find a job that paid me as much as a law firm would, I needed to look for a job or career which included travel, for an organisation which didn’t insist on me having a degree - how times had changed some firms even require a 2.1 degree to become a junior secretary now - which would give me job and personal satisfaction.  VSO fitted the bill – its an international volunteer agency; they recruit people over 25 with transferable skills rather than focusing on qualifications to achieve their objective of  making small but lasting differences to disadvantaged communities across the world.

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So in July 2008 I found myself on a 32—hour train trip bound for for Bhawanipatna in Orissa to work for Antodaya, a small NGO which supports indigenous tribal populations in their struggle for food security.  Bhawanipatna is capital of the poorest district in Orissa – Kalahandi - and Orissa competes with Bihar for unwanted title of poorest state in India - it wasn’t going to be a walk in the park.  Officially I was communications adviser but in reality I advised on and did anything I identified they needed advice on or doing including HR and staff motivation, finance, marketing donor strategy and tender submissions, website and database development, language and writing skills.  When they said your job may not turn out to be exactly initially described they certainly meant it.  I hadn’t been so excited and motivated by work since I had been in Eastern Europe in the early 90s.

 

On top of that I was living in India, one of the world’s culturally fascinating places.And actually living there - not staying in a hotel, but responsible for:

• my own washing - by hand in a bucket of cold water; and

• buying my own food at the local market

• cooking it on a two-ringed, bottled gas stove

• using gas bottles I’d had to negotiate to get – you had to be an Indian citizen to get domestic gas or you or a registered business to get the more expensive commercial gas – until I came along

• transport home on the back of a cycle rickshaw

• install it

all by myself. well not entirely by myself – Indians, I was to discover– are friendly and extremely helpful -  but only when they drop their reserve.

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When I had first arrived, apart from my boss, Dillip, a committed, cultured and very funny man, and my landlord, Surendra, who had the inbred confidence of a wealthy Brahmin (top caste), people were generally scared of me and confined their interaction to long hard stares from a distance. I was the only foreigner in town so it could have got very lonely. I needed to crack their reticence.  First, I returned their stares with smiles, but then I made an interesting discovery- if you’re not perfect you’re less scary – I accidentally left my house keys on the fruit stall one evening and, in a world of my own, hadn’t heard/the stallholder calling after me. Very kindly when the stall holder had finished work he brought my keys into the office - everyone knew I was working for Dillip at Antodaya - and gave them to Drubo, the office junior. Drubo had had to come running after me twice that week already because I had left the same keys on my desk and gone home - they compared notes. I was forgetful, I couldn’t hear, I clearly needed looking after and I might even be nice.  Word travels fast in a small rural town so whilst Drubo was telling all his friends about this strange, forgetful English girl who  didn’t necessarily think she was God’s gift to creation and might just be safe to talk to, the stallholder was telling his customers the same thing - I’d inadvertently cracked it, and the offers to come for a cup of masala chai exploded as did offers of assistance when it was obvious I hadn’t  a clue how to find  my way through the Indian system  I did sometimes make deliberate mistakes in future to put people at their ease, but the word was out, I might be foreign and do strange things but basically I was OK.

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During my two years in India, I learnt a lot, but this was one of the most valuable lessons in terms of trying to see yourself as others might see you.  My greatest achievement was raising US$15,000 from the United Nations Development Programme to fund the creation of mobile information clinics devoted to educating the trial population that were the focus Antodaya’s work on land rights and how to claim them.  Land, or lack of it, is major factor when it comes to food security and staving off starvation. £15,000 might not seem like much money but it doubled Antodaya’s income for two years.  Since then, the new concept of training very remote communities through the use of “mobile clinics” staffed by members of the beneficiary community has been widely praised and copied.  How satisfying is that?

 

On my return to London in 2010, I walked straight into the financial depression, which had hit the charity sector as hard as any other. I found they were just not prepared to employ someone with only two years charity experience (and/or I wasn’t good enough at selling myself) on a salary I could afford to live on when they could get someone far more charity experience. So, reluctantly, I went back to marketing lawyers which is when I was diagnosed. I walked out 2 years ago.

 

 

Dr. Shadi:  When were you diagnosed with the disease? 

 

Susie Price:   November 2012

 

Dr. Shadi:  Did you have any symptoms before that?  What made you go to see a doctor?

 

Susie Price:  About a year before I began to feel very tired and went to see the doctor.  She thought it was connected with my diabetes and tried to get me to see their diabetic nurse I knew it wasn’t so I didn’t go.  I went back in May and made it clear it wasn’t my diabetes and was referred to a general physician who said he thought it was Parkinson’s and referred me to a neurologist who confirmed his diagnosis.

 

Dr. Shadi:  Did you know anything about Parkinson’s disease before that?

 

Susie Price:  No not at all.

 

Dr.  Shadi:  What Parkinson's organizations do you belong to?

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Susie Price:    I belong to the South London Young Parkinson’s Network and am on the committee

 

Dr. Shadi:  I hear you are going on a trip soon.  where are you going? 

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Susie Price:   I’m going to Cambodia and Vietnam for three weeks in January.  In Cambodia, I’m travelling on a private one-man tour with a guide and in Vietnam I ‘m travelling with a friend on a trip I have organized. 

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Dr. Shadi:  Have a great trip,  Susie,  it has been a great pleasure to speak with you today.

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