Just Three Words: Reflecting on life with Parkinson’s


Three words is all it takes.

Three words.

But these three words will change the way you see your future…your life ahead.

And, like the tension of awarding Oscars. There seems to be a pregnant pause and then…

“You have Parkinson’s”

These three words.

For those who hear the diagnosis, it is devastating yet it is with a sense of relief that at last they know what has been bothering them for so long.

You see, the symptoms of Parkinson’s have been evident for some time, years maybe, but we didn’t know it, we didn’t realise.

One of the first things you learn when you are diagnosed is that everyone who has Parkinson’s is different.  By that it means no two people have the same symptoms.  Yes it seems unbelievable that the tell tale sign of the tremor in your hand….but wait a minute!  About a third of people diagnosed with this condition do not have a tremor.  So what other symptoms are there?

Some start to lose their sense of smell, some ‘live out’ loud and active dreams, shouting out, screaming and sometimes hitting their bed partner.  Many drool with excess saliva and have a damp pillow when they wake, lots of us find it really hard to turn over in bed, trying to shift your body but resembling a beached whale.  Walking becomes difficult, with some people ‘freezing ‘. Stuck to the spot, some taking sort shuffling steps.  Dexterity seems to leave you as you fumble in your purses, trying to pay your bill, doing up buttons and zips is challenging.  Your future looks grim as Parkinson’s is not an illness that will get better.  It is a future of not knowing what will happen to you, or your friends and partners……

Just three Words –  Your Way Ahead

Another Three Words

New friendships will be forged as common interests develop.  The WWW becomes a huge resource not just a vehicle to send pictures and e-Mails.  You can become your own expert as you keep up to date with newly published papers on areas that particularly appeals to you.

Being based in Oxfordshire there are many opportunities to take part in research projects being run by Oxford University and Brookes University.  This gives you an insight into the world of research and provides an opportunity to meet researches who are devoting their lives to helping to find ways to improve your future.

The annual Parkinson’s Awareness Week provides you with the opportunity to make your own contribution to developing a cure by raising funds and increasing awareness. There is no state funding for Parkinson’s research so every contribution is very welcome. The Oxford Walk; the BBQ in Wytham Woods; the Cheats Pub Quiz; Christmas Shopping day and Branch Meetings and Holiday are some of the ways we support fund raising and each other.

We are advised that mental and physical exercise help slow the progression.  The Branch supports this in a number of ways, with Zumba; Physiotherapy; ‘Voice’, singing in a choir, Wellbeing; Dance for Parkinson’s (Ballet with English National Ballet) to mention just some of the events that the Branch supports.

Securing shoe laces may seem to take too many attempts, but there are slip-ons and shoe horns! There is also support aids to help ones life be a little bit easier to cope with, a handle to help getting out of bed, slippy sheets to help you turn over in bed and many more small but useful things.  Life has definitely slowed down a pace and its good to cram as much as possible in the morning, and early afternoon when the drugs seem to be more effective.  Perhaps medically retired there are opportunities to volunteer at a local charity shop, take up silver jewellery making, attend the local gym and even try street dancing.

So whilst many day to day activities may take a little longer and be the cause of irritations a “Parky’s” life isn’t all bad.

This article was written by David Salisbury, a member of the Parkinson’s Society in Oxford

Take a look at www.parkinsons.org.uk for more details or get in touch with your local branch.

What’s your housing story?


What’s Your Housing Story?

Last week I watched the BBC documentary No Place to Call Home. It told the moving stories of people facing homelessness in the Borough of Barking and Dagenham. The diversity of the stories were a reminder of the ways in which housing is becoming an increasing problem for people from all parts of our communities.

Stories of Homelessness

A student parent shared her story of being told to leave her family home after she became pregnant. As a student she had no entitlement to housing benefit and began sofa surfing. Three years later she, her boyfriend and their 2 year old child were still sleeping on sofas.

Whilst her partner worked full time as a railway worker, his £900 per month earnings couldn’t match the £950-1000 needed for even a basic flat in the borough. Housing officers suggested that the student give up her teaching degree in order to qualify for housing benefit, but the degree was the families main hope for a more prosperous future.

For a South African woman, ill health was the tipping point between maintaining a private rental and a rapid fall into homelessness. After 12 years of working as a special needs teacher, a serious car crash led to the loss of her job. Without this income her rent became a struggle and the woman had to leave her tenancy. As a single person without a significant disability, the council decided it had no duty to house her.

After one cold and fearful night in her car, the woman found a way to a church-run winter night shelter. She was relieved to see mattresses spaced out for privacy, fresh bedding, a hot meal and people to talk to. In tears she told the staff that it was the first place she had felt safe in a long time.

The Bigger Picture

These stories are just the tip of the iceberg. Homelessness is rapidly increasing as housing becomes less affordable and private rentals remain relatively insecure. In Milton Keynes there has been a 96% increase in the number of families in temporary accommodation since last year. And in Oxford 3000 people are waiting for social housing with only 500 expected to be placed over the course of the year.

Churches’ Response

We already know that many churches are responding to meet the needs of those on the streets through winter night shelters (like those in Bracknell, Milton Keynes, Reading and Slough) and through longer term work in supported housing projects (such as St Aldate’s ACT project). We would love to hear from other churches and groups involved in this work.

Responding to wider issues of housing need is crucial in providing long term solutions to homelessness. We know that there is a real need for landlords to get involved in social letting, and in modelling the highest ethical standards (perhaps through supporting initiatives such as the Quaker run Ethical Landlords Association). Investors may be able to support social letting funds or set up deposit guarantee schemes. Churches with land to spare can contribute by working with external agencies on developing genuinely affordable housing (as Littlemore Baptist have done).

Others may be able to volunteer as befrienders, offering the relational support which can help people to sustain a private tenancy for the first time.

What’s your Housing Story?

Over the coming months we’ll be listening to stories from across the diocese as part of our efforts to respond to issues of housing and homelessness. If you have experienced difficulties with housing or if you work to provide for housing needs we’d love to hear from you.

Contact: Bethan Willis – bethan.willis@oxford.anglican.org