up: you and parkinson's

YOUPARKINSON’SA MAGAZINE FOR ALL

APRIL 2009 ISSUE 45

PDS YOUNGER NETWORK PUBLICATION

&

INSIDe thIS ISSUe:

RIveR DeePmOUNtAIN hIghClimbing mountains or cycling the Danube: inspiring stories from our readers

mAKINg wAveSSteve Ford, CEO, wants you to help the PDS make a bigger splash

heAlINg hANDSHow reiki can help heal the mind, body and soul

StANDINg tAll

JOHN, 24, AND ON A MISSION,

COMES OUT FIGHTING

New YeAR,New lOOK!

2 UP | YOU+PARKINSON’SUP | YOU+PARKINSON’S2

A very warm welcome to the new look younger persons network Magazine. The

magazine titled UP doesn’t replace the previous one it has simply evolved out of all the good work done by Tina and the team. I will talk a little bit more about the new format later firstly I would like to introduce myself and tell you why I have stepped into the Editors shoes for the next 12 months.

I have been fortunate enough to have met many of you either at the YPN AGM Stratford or the PDS AGM in 2008. However for those who don’t know me I am Colleen often known as Boo, I am 46 this year and have had Parkinson’s symptoms since 2004 being diagnosed in 2005.

ItS AbOUt lIvINg NOt lIvINg wIthLiving with Parkinson’s can be frustrating, often hilarious, but for the most is something I don’t think about. I don’t think about it because I don’t have the time, and it really doesn’t impact on my life in a negative way. My life focus is about being fulfilled, happy and in control. This isn’t just the way I feel its the way many of us living with the condition feel. We are living our lives first and Parkinson’s is simply a common factor that we share.

the ONlY wAY IS UP This magazine is key in reflecting the way we are living and I hope it will embrace a wider audience so that we can educate and inform those with Parkinson’s and those without. We are striving to bring you a good cross section of stories, news and information and I hope that the new sections will help you to navigate the pages better.

A change of editorship is healthy as each of us has a different approach the main thing is not for me to undo all the good work done but to add to it and this I hope we can achieve together.

In order to bring to you the best magazine that we can you need to tell us what we have got right as well as what we need to improve, can I ask for you to send your feedback to: [email protected]

A gIANt Of A StORYIt is only apt that we launch the magazine with a young man called John. I met John whilst at Barnsley giving a talk and we got on immediately. Now John is 24 and was diagnosed at 22. Now I have Parkinson’s but at 40 something I had already had a great life, I think back to when I was 24 overlay Parkinson’s and gosh that’s tough. Well luckily for me John is tough too, read his story and like me you’ll join his fan club!

fIRStlY hellOYour editor introduces your new look magazine

tINA bOwS OUt

hello everyoneI said in the last

magazine “watch this space”

Well here it is!!!Over the last 6 months

I realised that I can’t do anymore to improve the magazine and that began to needle away at me. I have had lots of support which I am so grateful for. I have even had letters and messages from people congratulating me which has made my decision harder but, I am sticking to my decision and stepping down as editor.

I have handed over the reins of the magazine to a truly remarkable lady. I feel that she, along with the people that supported me, will take the magazine into a new era.

I would like to thank Phil Beckett, Phil Wright, Linda the editor prior to me for the support and encouragement to Implement the changes.

Without further ado (fanfare) Welcome to the NEW style magazine

UP = U and PARKINSONS.

Reins handed over to Colleen (Boo) Henderson Haywood, along with a huge bag of pick and mix.

With the very best wishes and kindest regards

Tina x

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APRIl 2009 ISSUe 45

1. the NAmeThe Magazine has been named UP representing ‘you and Parkinson’s’. UP is the way many of us feel about our life living with this condition. We remain upbeat, we are uplifted by the inspiration around us, and UP is the direction we are headed! As Yazz once sang (groan!) the only way is ‘UP’

2. the New lOgOThe design of the new logo depicts the U and P in an arrow shaped lozenge which points ‘UP’, the colours are fresh and clean. The overall feel of the logo is one of strength and determination, which represents the essence of the Younger Parkinson’s Network (YPN).

3. the vISIONThe medium term vision is to have a magazine more lifestyle driven as well as being more ‘reader’ friendly to the general public. By having a wider audience we can educate, inform and inspire people to support and understand those living with this condition. For our own needs the YPN are people living full and varied lives. Many of us still work, have young families, have wide interests, love sport, and are very active. This is our magazine and needs to be reflective of us.

4. COlOUR CODINgThe magazine has been split into categories, Editorial, People, Medical, YPN network and Lifestyle – each one colour coded on the outside page strip and on the headlines for each story.

5. PICtURe ICONSHere is a guide to the icons used for ease of identification:

6. YOUR CONtRIbUtION... ...remains the most important – without you we would have empty pages. So please keep your articles, comments and input flowing...

YPN NetwORK

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OUR New mAgAzINeYour guide to the new layout...

CONteNtS

eDItORIAl

PeOPle

meDICAl

lIfeStYle

fACINg UP 4

mAggIe’S StORY – KeePINg bUSY AND ON the mOve 6

gINgeR CheeR 9

AIN’t NO mOUNtAIN hIgh eNOUgh... 10

SlAve tO the SCARf... 13

DOwN the DANUbe 14

mAKINg wAveS, NOt RIPPleS 16

PARtY fOR PARKINSON’S 17

eveNtS DIARY 18

mY DAD... 19

beINg A PAReNt 20

ReIKI eNeRgY theRAPY 22

tOP 10... 24

ShARINg A gOlDeN mOmeNt 24

hOw DO YOU ReSPOND... 25

Q+A 26

bACK tO fRONt: YOUNg heROeS 28

4 UP | YOU+PARKINSON’S

eDItOR’S INtRO‘I asked John to be the opening ‘face’ of the new look magazine because he truly is a dynamic young onset patient, at 24 the youngest person with Parkinson’s I personally have met. John faces more challenges than most at his age as he has a lot of life in front of him, a life living with this condition. John’s spirit is infectious, his attitude is amazing and I simply like him, actually I like him a lot. I have asked him over the next four editions to tell us about his experience so far. The first one covers his diagnoses’

At 22 years old I was, like most people of that age, invincible. I

had my youth, I owned my own business and I had my health. Life was good although it had certainly already been eventful.

I had been through numerous operations, I served in the British Army as an Infantry Soldier and when I had only just met my brother Dale, unfortunately he was murdered the year after. I had my up’s and down’s but I coped with it all and always remained positive.

The only thing that really concerned me was this pesky little tremor I had.

I have always had a slight tremor but my increasingly

annoying left hand started to get electric shocks and twitches.

Over six years the shocks died down but the tremor and twitches decided to assume full control over my left arm.

In order to get to the bottom of it I had an MRI Scan that didn’t show anything but at least I knew it wasn’t a tumour (even if it was they would just remove it and all would be OK.)

Then followed a DAT Scan, similar to an MRI but you had to have a radioactive injection: ‘Pardon, say again please, over. A Radioactive injection!’ I made a joke of it saying that I would be glowing green but eventually it was this scan that ultimately

fACINg UP

In the first of four parts, John tells us about his

diagnosis of Parkinson’s Disease and how he

won’t let it get him down

APRIl 2009 ISSUe 45

delivered my diagnosis which wasn’t so funny.

I attended the scan and my neurologist informed me that a week later I would get my results. One week later he called me. I was with a good friend, Steve when my Doctor called. “Unfortunately John, I need to tell you that we have the results back for that scan we sent you for. I need to tell you that you have a reduced uptake of dopamine, which indicates that you have Parkinson’s Disease. Parkinson’s Disease is a Neurological degenerative disease...”

After the conversation I hung up and told Steve, not really knowing what it all meant, but I knew just the same that it wasn’t good.

This news follows two years of intense examinations, scans and tests so I wouldn’t say my diagnosis came as an immediate shock. With the amount of time I had waited for this life-changing acumen, I was in all honesty excited that they had finally pinpointed the cause of my tremor amongst other things. Despite being pleased at the diagnosis

I was still scared of my sudden new future, but I had to stay positive and still do. We are each different but I did this by increasing my knowledge of Parkinson’s disease not necessarily the medical information but finding other people like me.

It wasn’t easy – I couldn’t find a Parkinson’s sufferer in my age group and I can feel alone. In addition all the information I find about Parkinson’s revolves around people over 35 years and this can make me feel even more isolated.

Finally one day, it all sank in. The future, what would happen and will I be like that?

I pondered on this for quite a long time and then it dawned on me that, because of my age, I’m pretty special. I don’t like considering myself as special, but it does help me.

I had a better chance of winning the Lottery than acquiring Parkinson’s and that’s a true reflection of my luck. I don’t consider myself as disabled, but then again ‘I’m’ not, my body is. I do have my down days when I feel depressed or anxious. I tackle this by listening to lots

of music at a volume more suited for a nightclub and this tends to cheer me up.

My age can have a distinct disadvantage. Not many young people have Parkinson’s and it is more commonly associated with the elderly. Because of this combined with my tremor I am stared at on a regular basis and distressfully to me there is no easy way to deal with it.

When someone is staring and I get anxious I have said to people, “Don’t worry, it doesn’t bite!” The response I receive, normally a little giggle or the question, “Why are you shaking?” does put me at ease and it educates people at the same time.

Life has certainly had it’s up’s and down’s, and for some people life doesn’t relent from throwing these challenges in an attempt to trip us up. When we do fall I believe it is a reflection of our character as to what we do and I passionately believe that remaining positive is vital during any period of hardship or challenging times.

What you do is who you are!

COve

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“I passionately believe that remaining positive is vital during any period of hardship or challenging times”

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mAggIe’S StORY – KeePINg bUSY AND ON the mOveten years ago Maggie

Huscroft was working as a senior lecturer in art

and design at the University of Westminster. For some time, she’d blamed her bed for her aching back and convinced herself that the pain in her shoulder was due to a trapped nerve. A diagnosis of Parkinson’s disease came as a complete shock but made her determined to carry on living life to the full.

Maggie says: “I was blissfully unaware that anything was wrong but looking back the signs were there. I bought a new bed but my aching back didn’t go away, my handwriting was becoming crabby and I remember drawing a diagram for a student and my hand kept shaking for no apparent reason. A friend also commented on the length of time it took me to sign my name. It was two years before the penny

finally dropped that something was wrong.

“My doctor referred me to a neurologist. I went to work as normal in the morning, then after seeing the neurologist, and hearing his diagnosis of Parkinson’s disease, I went back to work again in the afternoon. I told the first person I saw in the corridor, a colleague I’d known for a long time – and he hugged me. I cried a little but then the students

APRIl 2009 ISSUe 45

started arriving for a seminar and I just got on with it as if nothing had happened. In the evening I told my two sons.

“I continued working for another 18 months until my retirement. During that time I felt a low level sense of anxiety, like butterflies in my stomach, and I started to lose weight. I didn’t know a lot about my newly diagnosed condition and decided it was time to find out as much as possible. Going along to a Parkinson’s Disease Society meeting was a revelation and my anxiety started to ease. I joined one of their conductive education classes, bought some very useful books and faced my fears.

“All that time I was still driving around in my beloved sports car, a Mazda

MX-5, in racing green. But the time came when I had to admit that it was getting too difficult to get in and out of it. Without my car I became mainly housebound as walking was becoming increasingly difficult. I had to rely on lifts from friends and family to get out and about or use taxis. I still wanted to drive and to have a car that’s fun but it all seemed out of reach. That was until a friend recommended the Motability Scheme to me a couple of years ago, then my world opened up again.

Over 500,000 disabled people and their families across the UK currently enjoy the freedom and independence of a Motability car, powered wheelchair or scooter.

whO CAN APPlY?The Motability Scheme is available to anyone who is receiving one of the following benefits, and has at least 12 months award length remaining when they apply:l Higher Rate Mobility

Component of the Disability Living Allowance.

l War Pensioners’ Mobility Supplement.A parent or carer can apply

on behalf of a child aged three or older and non-drivers can apply for a car as a passenger.

hOw DOeS It wORK?Customers simply transfer their mobility allowance to lease or purchase a suitable vehicle. The most popular option is the Contract Hire Scheme, which includes insurance, tyre and windscreen replacement, servicing, breakdown cover

and road tax. A similar all-inclusive hire plan is available for powered wheelchair and scooters.

Cars are supplied through a national network of some 4,500 Motability Dealer Partners. There is also a network of accredited suppliers of powered wheelchairs and scooters.

ADAPtAtIONS tO CARSFor most Motability customers, a standard production car is suitable for their needs, but special adaptations are needed for around 10% of customers, to enable them to drive safely, or travel in comfort as a passenger. As part of the Contract Hire package, a range of popular adaptations are available at no additional cost, such as push-pull hand controls and left-foot accelerators.

fURtheR INfORmAtION More details can be obtained by telephoning Motability’s Customer Services Team on 0845 456 4566 or by visiting the Motability website at www.motability.co.uk.

mOtAbIlItY fReeDOm AND INDePeNDeNCe

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“I discovered that I could simply exchange my mobility allowance for a brand new car through the Motability Scheme. I went along to my local car dealership and their Motability Specialist gave me good advice about selecting a car to suit me. I decided to lease a snazzy Citroen C3 – with leather seats and a sun roof! The car is perfect for me as I can sit up high, which is a great help, and the leather upholstery makes it easy for me to slide in and out of the driving seat. The other bonus is that the back seats fold down easily, making plenty of room for my walking frame.

“It’s very reassuring knowing I’ve got a reliable car, without all the stress of having to arrange tax and insurance, Motability takes care of that for me as well as servicing and breakdown cover. And getting back in the driving seat again has raised my self-esteem and general confidence. There are times when I don’t feel like driving but my daughter-in-law takes over then as she’s included on the insurance policy.

“Soon after I placed the order for my car, I was thrilled to receive an invitation from Motability to take part in a special celebration at the Royal Mews, Buckingham

Palace. This was to mark the milestone of 2 million Motability cars having been supplied since the Scheme started. I was one of six customers to be presented with the keys to their new car by Her Royal Highness Princess Alexandra – it was a wonderful day.

“Since retiring, I’ve become more involved in the work of the Parkinson’s Disease Society and had time to paint and write for my own pleasure. I’ve sold some of my paintings and I’ve even had a book of poems published. Although my voice has gradually become affected, I was proud to be able to give a speech at my son’s wedding.

“I’ve found that Parkinson’s has a way of slowly chipping away at my skills but I like to try to keep one jump ahead of it and my latest hobby is cake making. It’s very rewarding and although it’s not so good for my waist line, it’s not as demanding as painting or poetry and it keeps the creative juices flowing.

“My words to my students come back to haunt me sometimes – ‘Just because something is difficult is no reason not to do it’ – so I’m constantly trying out different ways of doing things. I don’t always succeed but it keeps me busy.”

DvD: the SeCRet’S OUtThis short DVD about the Motability Scheme is fronted by Julie Fernandez, a prominent disability rights campaigner. Julie brings the Scheme to life by explaining how Motability can help people with their mobility needs. It covers everything from who can use the Motability Scheme, and how it works to actually getting on the road. During the DVD, Julie meets with several Motability customers to find out the difference the Scheme has made to them.

The DVD is available free of charge by calling the Motability Brochure Hotline on 01279 632067 or online at www.motability.co.uk.

Above: Maggie meets HRH Princess Alexandra to collect the keys to her new Motability car.

“Getting back in the driving seat again has raised my self-esteem and general confidence”

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Studies have shown that ginger can help if you are feeling nauseous; I certainly found this to be the case and have a healthy addiction to ginger beer and biscuits. In any case ginger is a great fl avour, hot and punchy its one of the least shy of the spices. It is also full of imagery and conjures up for me a picture of an exotic market rich with aromatic smells and a kaleidoscope of vivid colours like a fi ery sunset bursting the warm evening skies.

gINgeR CheeRSImPle gINgeR bISCUIt ReCIPeINgReDIeNtS125g/4oz butter125g/4oz caster sugar125g/4oz self-raising fl our2 tsp ground ginger1 tbsp beaten egg

methOD1. Cream the butter and the sugar. Stir in the

egg and the fl our and ginger (sieved).2. Roll into small balls and place on a baking

tray and leave room to spread out.3. Cook for 45 minutes at 140C/275F/Gas 1

on the shelf


AIN’t NO mOUNtAIN hIgh eNOUgh......to stop Margaret Scott. How a moment of inspiration while gazing through a car window turned into a birthday to remember.

In early May last year, I was travelling through Glencoe with my husband. Andy was driving and I gazed pensively out of the window while the

magnificent mountain scenery flashed past, mingled with memories. I have often been to Glencoe: walking, rock climbing and ice climbing. I was raised in a mountaineering family; literally following the footsteps of my Mum or Dad’s steady pace every weekend and holiday, carefully placing my small foot in each big boot print. Later, I joined several climbing clubs and made steadfast and dependable friends. Shared struggles and joys make firm friendships. The mountains of my mind are still vivid. We climbed in all seasons, whatever the weather; battled blizzards with ice forming on eyelashes; ascended in the hushed night to see a midsummer sunrise; and lingered to watch a winter sunset before an icy dark descent. We have climbed up from a gloomy grey valley to be unexpectedly blessed by bright sunshine on an island peak in a sea of fluffy white cloud. Mountains have been the joy of my life.

I now have Parkinson’s Disease. I was diagnosed over 10 years ago, and everyday life is becoming progressively more difficult.

“Once a mountaineer, always a mountaineer.” my Dad had once said. Then added, with a wry smile, “You just choose different mountains.”

I scanned the mountains, which had inspired and challenged me, with a wistful yearning. My gaze was drawn to Curved Ridge on a beautiful mountain called Buachaille Etive Mor (translated as the great shepherd of Etive) and I recalled a missed opportunity to climb it many years ago. The route is classed as an easy ice climb in winter and graded as a moderate rock climb or difficult scramble in summer. It follows a lovely sweeping line up the great craggy face, leading to the summit at 1022m.

“What would you like for your birthday?” Andy asked, apparently from afar even though he sat beside me in the car. I was spellbound on a mountain.

“Curved Ridge” I replied with a flash of inspiration.

The magic of the mountains had worked; not by throwing a gauntlet, it had given me an invitation. Although I grinned, Andy knew I wasn’t joking and he was filled with foreboding. Without medication, I couldn’t survive long without assistance. I would

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lebe unable to eat, never mind walk, or even climb. Curved Ridge was a crazy idea. I’d need a miracle to have a successful day on the mountain.

One of the things I find difficult things to cope with about Parkinson’s is its variability. For the first few years, the medication worked well, but I now have excessive “on/off” fluctuations. The “off” phases, when the medication has no effect, happen at random several times every day and last from a few minutes up to about 4 hours. During these phases there is an apparent massive increase in the gravitational constant and I suffer an overwhelming fatigue. The amount of movement I have during these phases varies. Sometimes I am able to stagger forwards or backwards a short distance; occasionally I can only just manage to crawl a few metres. Often I can’t even sit up or take the next dose of medication without assistance. At other times during the day I get wild dyskinesia and my movements become random and uncontrolled, giving the appearance of being drunk. I loose my balance, stagger, bump into things, fall over, tumble off chairs and collect bruises.

But in between times, when the medication is working well, I feel in control of my body and can move almost normally (or so it seems to me, although photographic evidence is usually to the contrary). The problem is that these interludes never last long; certainly not long enough to get up Curved Ridge to the summit and safely down off the mountain. So how could I make it happen?

I had to focus on these elusive, unpredictable, brief hours or minutes to make the most of this precious gift. I would have to be in the right place at the right time, with the right people. This would require a combination of planning and luck.

I would certainly need assistance; obstinate independence just wasn’t going to work. I would need a competent climber to lead and someone who knew the route. I needed someone to carry my rucksack with plenty of extra clothes to wrap me up with when I stopped moving. A shelter for unpredictable Scottish mountain weather was added to the list of gear. I tried to think of all the likely things that could go wrong, so that I could be prepared. I would need plenty of manpower available in case I had to be hauled up or lowered off or carried down. I definitely did not want the mountain rescue to be called out.

It was surprisingly easy to get seven willing volunteers, including Andy who was supportive in spite of his misgivings. Nobody tried to deter me. Everyone I invited was enthusiastic about the venture and wanted to help. I had a good team; relaxed and yet dependable. I had known them all for a long time and they understood the situation and what was required.

My birthday is at the end of May. Last year it fell conveniently on a bank holiday weekend. We took advantage of this by deciding to do the route on the day with the best chance of good weather; not necessarily on my birthday. Accommodation was hard to find but, due to a cancellation, I managed to hire a large caravan, which with a bit of a squeeze would sleep all of us.

The guide book time is three to five hours and I reckoned that at my speed we would take at least twice as long as an average party. Sunset is about

9.45 pm, so we had plenty of spare time for lengthy stoppages. The timing of my medication was of course critical. I usually take one Sinemet Plus every 45 to 60 minutes. I find that my

medication doesn’t work well on a full stomach or after eating protein, so I planned my diet for the day, including high energy bars, fudge, fruit cake, grapes, dried fruit and high calorie drinks; all easy to eat and quick to digest.

The rest of the planning was simple. It just took a few phone calls to arrange who was bringing climbing gear and to organise transport. All I needed now was plenty of luck: to have enough “go” at the right times and to have good weather; otherwise it could be very unpleasant for all concerned. The weather forecast was good.

The day dawned bright and beautiful. I had set my alarm for an hour earlier than everyone else, so that my usual morning double dose of Sinemet had time to take effect. My friends had full cooked breakfast with very lean bacon while I ate a butty with all the trimmings. We set out in good time and high spirits, across the rough moorland, which gradually steepens as it approaches the mountain.

My medication wore off early in the day and I began to move very slowly and with great difficulty. I took another double dose of Sinemet. It is always a disappointment when I am robbed of movement, just as it is always a delight when it returns. Our early start meant that initially nobody else was

“Once a mountaineer, always a mountaineer.”


around, but soon other groups of climbers were catching up, and I felt embarrassed when I was unable to move aside for them to pass easily. For three and a half hours I toiled laboriously with imperceptible progress, in spite of all assistance and encouragement. My friends were in persistent good spirits and tried singing, which sometimes helps me get into a rhythm and move more easily. However the uneven ground made it impossible for me to get a steady pace, although the singing almost brought a smile to my face. But my mobility was deteriorating. I felt heavy, weary, and grim. At this stage I was taking Sinemet every 50 minutes. Any more than that would make me “hyper” and unstable on the most dangerous part of the route.

I ground to a halt. For over an hour, I stuck: immovable, uncomfortable. I began to feel guilty about being such a drag. I gave up hope of reaching the start of the route and told my companions to continue without me. The day was glorious: one of the best I’ve seen in Scotland, and I didn’t want my friends to waste it hanging around for me. But they ignored my protestations. It wasn’t the first time they had seen me dispirited or even despairing. They cajoled, chatted, joked and waited and played silly games and distracted me and took the pressure off and waited some more until I stopped feeling ill, and eventually movement came more easily and we began to flow uphill. It was miraculous!

Even though the ground was now steeper, each footstep was a delight. Since having Parkinson’s, I have found going up and down stairs is easier than walking on the level. In the same way, I find that steep ground is easier than flat ground. Climbing is easier than walking; it is in a more upright position and the hands can be used for balance without stooping. Also the pace is much slower as each movement requires thought.

The route itself was exposed but straightforward, with good handholds and footholds just where they were needed, and I had the safety of a rope and a careful leader. I revelled in each movement. The situation was spectacular, with balcony views of climbers on the adjacent rockface. We reached the summit almost too soon. The panorama was magnificent. But I knew I must keep going, while I could still move. After pausing for a few photos and a quick bite to eat, we continued carefully along the summit ridge; then briefly roped up again for the

short steep snow descent into the corrie.

About 500 ft further down, quite suddenly, my medication stopped working. My energy levels were now very low and it was well past time for a break. It was a little cooler here, on the east side of the mountain. Although there was plenty of daylight left, the sun was now behind the massive shoulder of the mountain. We put on another layer of clothes and had some food. After about an hour I had recovered a little and we continued down the mountainside.

I have great difficulty with my balance when descending. I have tried using sticks, but found them rather dangerous; they get in the way and I tend to trip up over them. Using only my hands for support is rather awkward and gives me back ache, as it entails either stooping, twisting or stepping backwards. Most of the descent was done on my backside with a combination of slither and slide or rolling movements. This inevitably involves a certain amount of bruising.

The angle eased and the path improved; the going got easier. The drivers went ahead to retrieve their cars and bring them as close as they could to shorten my descent. We reached the road a few minutes before the cars arrived and waited contentedly beside the river. Someone took my boots off, so that I could refresh my feet in the icy water. I was handed a cup of hot sweet coffee.

As I sat riverbank, feet in the stream, head in the clouds, I felt blessed: with the exceptional weather; and with the patience and support of my fantastic friends, without which this wonderful day would not have been possible.

I said a silent prayer of thanks to The Great Shepherd for our safe return.

Above: birthday bumps at the summit.


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Having Parkinson’s doesn’t mean that us ladies stop looking good! It is ever more important for confi dence and self esteem to enjoy what we wear...this summer the hottest accessory is that little scarf, worn in a whimsical way have some fun with feminine patterns, soft silks and lovely beaded ‘Vintage’ ones. Monsoon & Accessorize have a stunning collection, also try Per Una and Next.

Styles shown are Accessorizepriced from £9

SlAve tO the SCARf...

Scarf p

hotos co

urtesyof A

ccessorize


the idea to cycle along the river Danube in Mainland Europe for two months was born 10 years ago

when Lauraine, my other half, and I did a three week cycling holiday along the Romantic Road in Southern Germany. Once sown, the seed never really left our thoughts and last year we fi rmed up our plans – 1,000 miles from Donaueschingen/Germany to Budapest/Hungary – our good friends Ash & Ian were quickly on board and to our surprise work was very supportive as well!

To then add an element of fundraising to our adventure was the next natural step, albeit a big one for me. I had been diagnosed with Parkinson’s in 2005, and although quite a few people knew at the time, outside and inside work, serious fundraising meant going public in a big way. The Parkinson’s Disease Society (PDS – see http://www.parkinsons.org.uk/) was extremely supportive and provided us with information materials, t-shirts, posters and sponsorship packs – a website was set

up on JustGiving (http://www.justgiving.com/ullidonau) – notes sent out to family, friends, colleagues, asking for support. The response was overwhelming and our fundraising target of £1,000 was beaten on the fi rst day! To date we have collected more than £4,000 and still counting – the

majority from my friends and colleagues at Ford!

With all this support, the big day – 2 August – couldn’t come quick enough. We hadn’t booked much apart from the Eurostar from London to Brussels. Two days and eight trains later we reached Donaueschingen, the start of the Danube river. Proudly wearing my PDS t-shirt I posed

next to the carving saying “Source of Danube” – only 1,000 miles to go!

The next six weeks we spent cycling between 20 and 40 miles a day, crossing four countries with Germany, Austria, Slovakia and Hungary. To our surprise, border controls didn’t exist even in Eastern Europe. Never far away from the majestic river, we pedalled through

DOwN the DANUbeA long-cherished dream became a reality when Ulli Funken set off to cycle 1,000 miles down one of the most beautiful rivers in Europe – and raise money for the PDS at the same time

“My Parkinson’s did not hinder me at all... and I felt better than I had in a long time.”

APRIl 2009 ISSUe 45

gorgeous gorges, picturesque market towns, impressive vineyards, beautiful forest and farmland, staying in lovely hotels and “pensions”, German-style inns and B&Bs. Places like Tuttlingen, Gundelfi ngen, Beilngries, Guenzburg, Winzer (with castle!), Mauthausen, Grein, Melk, Mosonmagyarovar, Asvanyraro and Esztergom were amongst the highlights, if for nothing else than their peculiar sounding names!

My Parkinson’s did not hinder me at all, in fact the regular exercise gave me a real boost and I felt better than I had in a long time. A special moment came about when we met up with our friends Peter & Sarah and Sarah pledged to run the Florence Marathon in aid of the PDS – bless her!

With regards to language, I assumed the role of main interpreter in Germany and Austria, especially welcome when it came to restaurant menus. To our surprise though also in Slovakia and Hungary, German was not only spoken well but often preferred over English.

The weather played its part too – apart from two hours of drizzle during the fi rst week we had not seen any rain during the day. Yes there was the odd downpour overnight or even during breakfast, but by the time we set off in the morning, we were chasing the sunshine. Hearing some of the wet news from back home in the UK, we looked at each other every day and couldn’t believe our luck! And it should stay that way until the second to last day of cycling – six weeks of glorious sunshine.

978 miles and 46 days later we saw the impressive skyline of Budapest, one of the most beautiful cities in Europe.

I couldn’t have done it without my friends and fellow-cyclists and the many, many people back at home who wished us well, supported us with encouraging words and generous donations – it was a fantastic adventure – where to next?

Above: the team reach Budapest. Main picture, left: view from Schloss Grein towards the Danube

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In June this year, Parkinson’s sufferer David Greaves will be cycling 1000 miles from Lands End to John O’Groats, carrying an important message from end to end.

Research to fi nd a cure for Parkinson’s Diesase is in its end-game phase. Together we can consign it to the history books. Cycling with him every day will be representatives from every Parkinson’s Disease Society Branch in Britain. They are making a public declaration: “Now is the time to bring Parkinson’s Disease to an end”.

David’s target is initially to raise £100,000 – £100 for each mile he cycles. However, there are 90,000 people in Britain with Parkinson’s Disease who have no connection with the Parkinson’s Disease Society. We need your help us turn our target of £100,000 into £1,000,000.

Donations can be made by visiting: www.justgiving.com/pedalforparkinsons2009-02-26

eND tO eND tO eND PARKINSON’S DISeASe


I have now been Chief Exec of the PDS for over three years. Before this role, I spent my career in general management within the NHS. In some

ways my career has been the wrong way round. It is now, working as part of a patient organisation, that I am really starting to understand what people with a long term condition expect of the NHS. And whilst I hear lots of positive stories, and know of lots of clinicians who are committed to providing high quality health services for people with Parkinson’s, all too often the stories are negative. People not being able to access specialist care, people not receiving any information and support, or just that the manner in which the service is delivered is insensitive to the needs of their patients. Knowing what I now know, I’m sure that I would be a better NHS manager!

It has been good that over the last three years we have been able to expand the support offered by the PDS. We have become much more influential in promoting better quality health care and through our national programmes and local teams of staff and members, we have a much stronger voice. Our education teams are working hard to promote better understanding of Parkinson’s amongst professionals. Our national network of Information and Support Workers now offers us the opportunity to get alongside more people to ensure that they get the support and the services that they are entitled to.

gettINg OUR meSSAge ACROSSAnd so our plans now are to build on this new confidence and work to ensure that everyone is aware of the PDS. I know from conversations with doctors that they often don’t promote the

PDS to their patients. The reason for this is that they equate the PDS with the local branch. And they make the judgement that the branch will not be relevant or helpful to their newly diagnosed patients. I know that we have a range of branches and that many are geared up to engaging younger people, but I also know that many are not. We have to get over the message that the PDS is not just about our local branches but a way to get helpful practical information in a range of ways – from our publications and website to our Helpline and Information Support Workers. We need to do more to get this message across so that all 10,000 people diagnosed with Parkinson’s, and their families, know about and make use of this support. As we become more prominent and well known then we will see our income increase too. And that will allow us to increase our spending on research and be more proactive as we develop our cure strategy.

I recognise now that the services that I managed as an NHS manager were unresponsive, and clinician-focussed rather than patient-focussed. My priority now is to make sure that the PDS is the opposite of this. As a membership organisation we have to ensure that in everything that we do the voice of people living with Parkinson’s comes through – whether members or not. YPN provides a strong voice in the Society and has shaped our approach in so many ways. I welcome this new style magazine and hope that through it, younger people living with Parkinson’s will have a strong network and a strong voice. Through listening to this voice the Society can avoid the mistakes of the NHS and provide high quality and personal support.

mAKINg wAveS, NOt RIPPleSSteve Ford, Chief Executive of the PDS, reflects on three years in the job – and on the course ahead

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Party for Parkinson’s is a great way to support the work of the PDS. This year the PDS celebrates it’s 40th year of supporting people

with Parkinson’s – so it’s the perfect time to party! You can hold any kind of party, from a coffee morning to a fancy dress ball – whatever you raise helps us to continue our work.

This year we are aiming to raise £100,000 through Party for Parkinson’s – it’s a massive target, but with your help we can do it!

CelebRAte OUR 40th ANNIveRSARY!Get in to the spirit of spring and hold a Party for Parkinson’s! You can beat the credit crunch by having a clothes swapping party, or why not hold a 1940s party for our 40th Anniversary? Whatever you do, we’ll be here to support your party preparations.

ReQUeSt YOUR fRee PARtY PACKGet involved and make a difference – contact us to receive your free party pack on 020 7963 9319 or email [email protected]

Our new and improved party pack is full of ideas, tips and goodies to help you plan the perfect party. The pack also includes an exclusive Jane Asher cake recipe!

Don’t forget that we are always here to help if you need anything, or just to hear about your party – so please do not hesitate to get in touch!

PARtY fOR PARKINSON’SBe the host with the most and Party for Parkinson’s for our 40th anniversary!


APRIl 200906: Mark Dumas visits the Lincoln Branch07: Steve Ford visits the Bassetlaw Branch20: Parkinson’s Awareness Week20: Information event: Netherton21: Steve Ford visits the Sutton: Kingston and

Epsom Branch22: Information Day: Barnstaple23: Information Day: Stow-on-the-Wold26: Flora London Marathon 2009

mAY 200903: BUPA Great Edinburgh Run06: Steve Ford visits the Buxton Support Group09: Just Walk13: Steve Ford visits the Darlington Branch16: Steve Ford visits the York Branch17: BUPA Great Manchester Run18: Mark Dumas visits the Dumfries Branch

JUNe 200902: Steve Ford visits the Basingstoke Branch05: Steve Ford visits the Romsey Branch08: Mark Dumas visits the North Dorset Branch

AUgUSt 200911: Mark Dumas visits the Newbury Branch

SePtembeR 200906: Adidas Women’s Challenge06: Reebok Bristol Half Marathon17: Steve Ford visits the Skipton and District Branch

OCtObeR 200904: BUPA Great North Run06: Steve Ford visits the Stamford Support Group10: China Trek 200911: Royal Parks Half Marathon25: BUPA Great South Run 2009

NOvembeR 200901: ING New York Marathon®

07: Trek Sahara 200922: PDS 10k race

DeCembeR 200909: Christmas Carol Concert

eveNtS DIARY

UP magazine – the only official dedicated voice of younger people with Parkinson’s in the UKYOUNgeR PARKINSON’S NetwORKNAtIONAl COmmIttee

Chair Alun Morgan [email protected]

Vice Chair/Secretary Sue Duckworth [email protected]

Treasurer Roger Bradley [email protected]

Webmaster Alun Morgan [email protected]

Editor, UP magazine Colleen Henderson-Heywood [email protected]

Committee Members

Bob Hills, Delphine Bradley, Macattack, Gerry Duckworth

CORReSPONDeNCe fOR NAtIONAl COmmIttee tO:Chair YPN, 215 Vauxhall Bridge Road, London SW1V 1EJEmail: [email protected]

Medical advisor: Dr Richard Abbott


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Seven years ago when I was 10 years old I started to notice that my Dad’s walking wasn’t as good as it used to be. Early in the morning

he used to walk very slowly, shuffling along, I didn’t understand what was going on and why he was like this when none of my friend’s Dad’s were. My Mum told me what was wrong with my Dad; she said he had Parkinson’s disease, and answered my questions. I didn’t really understand what Parkinson’s was. The Parkinson’s nurse gave me some books which provided me with a better understanding and answered all of my questions; therefore I slowly began to understand more about this dreadful disease.

As time moved on my Dad’s illness got worse and he began to do unusual things. These problems were caused by side affects to some of his tablets, (as I found out years later), not all people with Parkinson’s act in this way. My Dad also has many other problems (which he didn’t have before his Parkinson’s) as well as his physical symptoms. Also recently my Dad has started gambling.

My Mum and Dad are now separated and I live with my Mum. I didn’t used to have the courage to see my Dad that often because his physical health really upset me and when I saw him for long periods of time I couldn’t stand it, I didn’t like looking at him with his stick and walking really badly. I thought none of my friend’s Dads were like this so why did this dreadful disease have to come to my Dad. I have moved on from that now and it doesn’t bother me as much. I try to see my Dad as often as I can and I speak to him on the phone.

I feel because of my Dad’s conition I have become more sensitive, caring and considerate

towards others. As I have got older I have become to understand and try to cope with my Dad’s condition but it’s not always easy.

When my Dad was well I took it for granted. You don’t realise how special something is until it’s gone. But I will always know my Dad will love me and I will love him too.

I have struggled to cope and understand about my Dad’s condition since I found out he had Parkinson’s disease. I know it will never be easy to deal with but it is important for everyone involved to find help to make it just that little bit easier. People with Parkinson’s disease are so brave and tolerant and everyone recognises their ability to cope even though it’s difficult. Carers of Parkinson’s disease sufferers are also amazing whether it’s their wife or husband, mother or father, sister or brother or even a friend with Parkinson’s disease, they help and support them by listening and consoling them as best as they can. But people like me are the ones others forget about, children of a Parkinson’s disease sufferer. Sometimes children struggle the most, they see things that most people of their age should never see, someone they love struggling to walk, someone they care about struggling to get dressed and someone they cherish struggling to cope with an illness no-one should have to deal with. As a teenager I think it’s so important to help those who aren’t recognised as in need of help. I think it’s vital that other young people like myself get the care and support they need. Young people need to remember even though their parent or relative has Parkinson’s disease they are the same person underneath this dreadful disease.

mY DAD...

eDItOR’S INtROBravery comes in many shapes and this little lady – who wants to stay anonymous – shows us all her courage. Parkinson’s has a wide reaching affect on all around it, the Young Onset group can have a bigger challenge when living with the condition and having a young family.

The PDS has produced a new handbook – Living with Parkinson’s – specifically about the issues facing younger patients. On the next two pages is an excerpt from the ‘Being a parent’ section, which gives tips on how to communicate with young children... But please get yourself a copy by contacting the PDS or via the website.


beINg A PAReNthOw DO I tAlK tO mY YOUNg ChIlDReN AbOUt PARKINSON’S?Many younger people with Parkinson’s have young or teenage children who will have questions about Parkinson’s and how it is likely to affect their parent in the future. After diagnosis, many parents wonder whether or not to tell their children about their illness; and if they decide to tell them, what is the best way to do this and how much to say.

These tips from parents and psychologists may help:

n Be open, honest and realistic with them. Don’t hide the condition from your children, as they may worry more about what they don’t know than what they do. They may reach their own conclusions, which in some cases may cause them more anxiety than the truth would.

n Make the explanation simple and appropriate to their age.

n Be specific and clear in describing the condition and don’t assume anything. You may know it is not contagious, but are they 100% sure?

n Remember that children need to feel that they have some control over how much information, they receive and when. Don’t give them too much information but make sure they know that they can discuss Parkinson’s with you and ask questions at any time.

n Reassure your children that it is extremely unlikely that they will develop Parkinson’s.

n Seek further advice and support if you are finding it hard to tell them, or are worried about their reaction or how they are coping with Parkinson’s in the family.

n Talk to other parents in a similar position through the YPN.

wANt tO KNOw mORe?n See the PDS information sheet Talking to

Children about Parkinson’s (code FS66).n The chapter on young-onset Parkinson’s in

the book Parkinson’s Disease: A Self-Help Guide for Patients and their Carers by Marjan Jahanshahi and C David Marsden includes a section on children and their reactions to parental illness.

n PDS publications for children and young people include: – a range of books for children with a parent or grandparent who has Parkinson’s – Parkinson’s: The Facts – a guide for young people aged 11–17 years

n I’ll Hold Your Hand, You Won’t Fall Down: a Child’s Guide to Parkinson’s Disease is a book written by Muhammad Ali’s daughter, Rashida.

DOeS PARKINSON’S AffeCt A mAN’S AbIlItY tO fAtheR ChIlDReN?We are unaware of any scientific research looking at male fertility and how Parkinson’s might affect this. However, we know of several men with Parkinson’s who have fathered children since being diagnosed with the condition. This includes Michael J Fox, the well-known actor and Parkinson’s campaigner.

whAt effeCtS DO PARKINSON’S hAve ON PRegNANCY IN SOmeONe wIth the CONDItION?The very small number of cases of pregnancy in Parkinson’s reported in medical journals means that there are problems with predicting what happens to women with Parkinson’s when they become pregnant. The available evidence from recorded cases is not particularly helpful, in that it simply states that some women’s symptoms

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worsen and some do not. It is encouraging to note, however, that the majority of the cases written about ended in successful, full-term delivery of healthy babies.

The following advice may be useful in coping with some of the problems encountered by women with Parkinson’s who are pregnant:

Balance problems – consult your health visitor for advice on posture and, if necessary, a physiotherapist for advice regarding balance and the use of a walking aid, if required.

Slowness of movement – allow more time to perform daily tasks. Remember, you will probably feel more fatigued than usual, so this will have a dual benefi t.

Nausea and vomiting – consult your GP or hospital team for advice. It is advisable to point out to them (as they may not be aware) that Maxalon and Stemetil should NOT be given to anybody with Parkinson’s. In addition, small, frequent meals six to eight times daily are advised, as well as avoiding high-fat and very spicy foods. Starchy foods, such as bread (toast) or dry breakfast cereals, can help with nausea.

Constipation – remember to drink plenty of fl uids and have a diet rich in fi bre to reduce the risk of becoming constipated. Remember, caffeine in drinks such as tea, coffee and cola can make you want to pass water more often and should be avoided.

Fatigue – try to get eight hours sleep every night, and rest during the day when possible.

Any woman with Parkinson’s who becomes or wishes to become pregnant should discuss this with her neurologist, obstetrician and PDNS at the fi rst opportunity.

wANt tO KNOw mORe?n See the PDS information sheet Pregnancy and

Parkinson’s (code FS19).

I Am A SINgle PAReNt wIth PARKINSON’S. hOw wIll I COPe?Being a single parent can be a challenge at the best of times, but when you have Parkinson’s, it can be a real test. However, many people do manage this situation well and there is no reason why you shouldn’t too.

Many lone parents fi nd it helpful to exchange ideas and tips with others in a similar position through the YPN. There are also organisations to support lone parents.

OUR lIveS wIth PARKINSON’SbY ANDRew ChARleS, whO wAS DIAgNOSeD wIth PARKINSON’S IN 2006 At the Age Of 42I saw my doctor because of stiffness in the left leg and arm – I was referred to a specialist neurologist who diagnosed Parkinson’s there and then. After this, I fell into a deep depression that lasted about six months. It took over my life, turning me into a recluse: unshaven not wanting to do anything; in a zombie state.

I have three girls, who were aged 14 to 17 at the time. My youngest took it the hardest: “Why my dad? He hasn’t done anything to hurt anybody”. But with the help of booklets, we got a better understanding, bringing my family closer. My girls would be my minders, looking out for me when we went places.

There is no easy way around Parkinson’s, but tell you children – don’t hide it, don’t bury your head in the sand. Your life will change, but through the PDS I have many more friends than ever.

AND JeNNIfeR ChARleS, whO wAS 16 wheN heR fAtheR wAS DIAgNOSeD wIth PARKINSON’SWhen I found out that my father had Parkinson’s, I was very unsure about what it was and how it would affect him. Once my parents explained to me what Parkinson was, I was very upset and didn’t know what to say or do to help my father. But in a short time, I learnt that he hadn’t really changed, except he would have a bad day now and again. On these days, I try to help out as much as possible.

The main way I found to deal with the feelings I had about Parkinson’s was to just talk to my dad. The overall effect Parkinson’s has had on the family is that it has brought us closer together, but it was very hard at fi rst.

This is an extract from the booklet Living with Parkinson’s: a guide for people of working age affected by the condition which is available from

www.parkinsons.org.uk/pdf/LivingWithParkinsonsGuide.pdfLivingWithParkinsonsGuide.pdf


“Reiki” (ray-key) is Japanese for ‘universal life energy’, a term used to describe many systems

of natural healing. This healing tradition was founded by Dr Mikao Usui in the early 20th century and evolved as a result of his research, experience and dedication.

The Reiki Principles:-Just for today, do not worry,Just for today, do not anger,Honour your parents, teachers & elders,Earn your living honestly,Show gratitude to every living thing– Mikao Usui

We live in a world of energy that nourishes and maintains all living things. When this energy flows uninterrupted there is balance and harmony within and around us and we experience a sense of well being.

There are many variations of Reiki, but in essence it is a healing process that works at bringing us into balance and reinforces the body’s natural ability to heal itself at all levels, whether physical, mental, emotional or spiritual. It is a tradition that is open to any belief system.

Reiki energy is a gentle, powerful energy which can help to heal the mind, body and soul. It is believed that many physical and emotional complaints can be attributed to imbalances in the flow of energy throughout the body’s chakras and meridians to release any blockages. Once our energies are in balance and flowing freely, our body can begin to heal itself.

Treatments are by appointment only and take place in a warm, comfortable environment with peaceful soft music and soothing aromas to enhance total

ReIKI eNeRgY theRAPY

eDItOR’S INtROI spoke with Carole and she is quite a woman. I was smiling at the way she signed herself off – have a look – she said ‘I’ve put them in order of importance’. Good for her!

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relaxation. The treatment can be for half an hour or an hour. You will be asked some questions to find out what you expect from the treatment and how you need it to benefit you. You will be asked to lie down, you will not need to remove any clothing other than outdoor shoes. . The practitioner gently places their hands non-intrusively, on or near the body. There is no massage or manipulation and the whole person is treated rather than specific symptoms. It is also possible to receive reiki at a distance.

Reiki is a healing process that anyone can benefit from in the normal course of their life and may also bring help and comfort to people suffering from a range of conditions. It should not, however, be regarded as a cure for such conditions. As a natural form of healing Reiki can support and enhance other forms of treatment. A person may or may not feel sensations during a treatment but most people feel relaxed and at peace afterwards. However, a treatment could stir up emotions or lead to a healing reaction, such as headaches or flu like symptoms.

During the treatment the therapist will place their hands on you in various positions around your head and body. As the energy begins to flow you may feel hot or cold or tingling, these are all normal sensations. The use of aromatherapy and crystals may be used. Crystals are placed along the body’s chakras* in order to enhance their properties for channelling energy.

(Chakras* The word Chakra comes from an ancient Indian language known as Sanskrit, Chakra means vortex, spinning wheel or circle (open to the front and back). The chakras spin in a clockwise direction and are shaped like a spinning fan. Each chakra spins at its own frequency ensuring that the ki

(universal life force) is drawn into body to keep the physical, mental, emotional and spiritual health of the body in balance.)

You remain conscious throughout the treatment although many people find it so relaxing they drift off to sleep for a while. After your treatment you should feel, calm and relaxed.

Reiki found me in the form of a colleague 3 years ago. I had been working for the NHS for 11 years and was currently taking over the family business with my husband. Life and work was stressful but I found peace talking to my friend Donna who was at the time studying Holistic Therapies, a subject I had always held a fascination with.

I had my first Reiki treatment whilst I was pregnant for the second time and during the treatment my very active little Oscar (now aged 2 and a half) was very still and peaceful. I could feel the heat from the lady’s hands tingle all through my body and within moments my mind and body were still – quite an achievement! I could see colours floating past my eyes and I was truly relaxed. My energy levels were boosted. My second session was completely different again but yet again I was totally relaxed and my mind was free.

It was following these sessions I realised I wanted to be able to experience reiki for myself and my family. I have suffered with ill health since I was diagnosed with M.E. in my teens. I also have terrible migraines which are helped with Reiki. I received my initiation in Reiki Levels I and II in 2008 to become a Reiki Practitioner. My journey has only just begun and I am very excited at what the future may hold.

Carol Rodwell – Mother, Wife, Businesswoman and Reiki PractitionerMember of the Fellowship of Healers


tOP 10...tINA wAlKeR’S...

fAvOURIte mUSICAl tRACKS Don’t Stop Believin’ by JourneyBaker Street by Gerry RaffertyStairway To Heaven by Led Zeppelin Human by KillersSarah by Thin LizzieBrighton Rock by QueenCould It Be Forever by David CassidyLove In An Elevator by AerosmithYou Sexy Thing by Hot ChocolateLoving You by Minnie Ripperton

fAvOURIte fIlmS/mUSICAlSIt’s A Wonderful LifeThe Breakfast ClubInn Of The Sixth HappinessSouth Pacifi cKing And I Sound Of MusicBreakfast At Tiffany’sHigh Society Casablanca Shrek

We’d love to hear your favourite Top 10s, email them to [email protected], and we’ll share them with other UP readers.

ShARINg A gOlDeN mOmeNt

eDItOR’S INtROMusic is a big part of my life, I use it as therapy and it is effective in lifting my spirits and making me feel strong. I dance everyday fi lling my space full of cheesy loud 1970’s and 80’s disco (rare 12” remixes my speciality) and I prance about like a hot gossip diva it beats yoga! No cheese here though this Goldfrapp album is up there especially Monster Love.

gOlDfRAPP – SeveNth tRee

goldfrapp hit the music scene in 1999 with a seductive blend of dance,

pop and electronica all under-pinned by Alison Goldfrapps pure and glassy vocals. And it has to be said, her sophisticated, feisty and sexy image. However, rather like David Bowie, she and her band are continuously reinventing themselves both in terms of sound and visuals and it’s accurate to say they have moved on considerably in the last ten years.

With their latest Album, ‘Seventh Tree’, the duo of Alison Goldfrapp and Will Gregory felt inspired by an ‘unplugged’ radio session they had done and incorporated acoustic guitar in their sound for the fi rst time. Simultaneously, the singer toned down her overtly sexual image to one that is more folky and pagan, as she felt the image was taking over the music.

The result is a softly seductive mix of lush dreamy music, with rich and expressive singing. This time around Alison Goldfrapp’s vocals are not electronically treated but are allowed to

organically express the deep and involving lyrics. The melodies are rich and full of hooks, and the overall effect evokes a warm feeling of bucolic pleasure – rather like drinking cold cider at the end of a warm August evening in the countryside, with the threat of a thunderstorm hanging in the slightly humid air.

Standout tracks are ‘Monster Love’ a delicate song about consuming love that swells with yearning and lush orchestration, while ‘A&E’ is an immediately engaging and hook-laden song with a subtly invasive and hypnotic beat which demands repeated playing. ‘Little Bird’ starts off as a breathy electronic folk track, with Ms Goldfrapp repeating the refrain ‘Now we are free’ with a subtle and beautiful intensity. Then halfway through it changes gear to a smoulderingly ecstatic dance track with sky high vocals and a beat full of sinuous grooves.

Overall the album is thoroughly recommended. The musicianship, vocals and originality are outstanding and it is quite simply, a beautiful listen.

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If someone says “You look much better than the last time I saw you” Should you reply:

a. “Thank you, I do feel so much better”

b. “That’s funny, because you said that last time we met”

c. “ The candle always glows brightest just before it goes out”

d. “Actually I am worse because Parkinson’s is a degenerative disease”

e. “I know, I am fatter”

If someone says “Are you ok?” a. You reply “No” they walk on

past you.b. You reply “Yes” they walk on

past you

If someone says “What’s the matter with you?”a. You say “ I have Parkinson’s”

they say “I’ve been ill for weeks too”

b. You say “I have Parkinson’s” they say ”How did you catch it?”

c. You say “I have Parkinson’s” they say ”At least there’s a cure now”

d. You say “I have Parkinson’s” they say ”The drugs are much better now”

e. You say “I have Parkinson’s” they say “What’s that?”

You want a seat on a full train and you say “I am disabled”:a. They say “we all have a

disability”b. They say “of course, have my

seat”c. “On yer bike” You say to your

carer

“Will you fetch my glasses” a. Carer says: “Don’t be lazy” b. Carer says:”If you can do a

Marathon; you can get them yourself”

Your carer wakes and says “My joints all ache”. Should you say: a. “I’ll get you a nice cup of tea” b. “Join the club” c. “I’ve been ill for 10 years”

Your carer responds:a. “Thank you” or “Thank you,

mind you don’t spill any tea on the carpet”

b. “You are not the only one allowed to be ill”

c. “You are not the only one allowed to be ill”

hOw DO YOU ReSPOND... tO PeOPle whO YOU meet?By Alun Morgan

eDItOR’S INtROAlun Morgan is quite a man despite hailing from the wrong side of Offa’s Dyke and all but trying to poison me with Lava bread... Those who know him, or of him, (that’s probably anyone who takes the train from Wales to London) will appreciate his humor... in typical style please enjoy his advice...

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Q. whAt DO YOU DO? I’m responsible for managing the PDS website www.parkinsons.org.uk.

Our website contains over 1400 pages of news, information and advice for everyone affected by Parkinson’s in the UK. We provide free publications on all aspects of Parkinson’s and there’s also a section for health and social care professionals.

We list contact information for regional support teams as well as details of branches and support groups so people can easily find out about local support in their region. And the site has a very active discussion forum where people living with Parkinson’s can share their experiences.

My job is to develop new features and content that will help the PDS reach more people through its website. I work closely with our Web Editor, Sharon Giles, who edits and publishes new content.

My role has a lot of people contact, and most days I will usually be working with PDS staff from fundraising, information resources, policy, IT, research, media and teams in the regions; talking to branch members and

representatives from the Younger Parkinson’s Network, and working with external technology agencies who help us design new features for the site.

The job is different every day – but it’s always busy.

Q. hOw lONg hAve YOU wORKeD heRe… AND whAt DID YOU DO befORe? I’ve been at the PDS since November 2007. Before that I worked as a Product Manager for a medical website following several years at the BBC in New Media and News.

I actually started out my career as a librarian – then moved into technology as more and more information resources were going online. Basically, even though my job titles have changed over the years, I still see my job as being about ensuring people get the information they need. The difference now is you have so many more channels of information to choose from – and instant access to the views and opinions of people across the world. This creates a challenge for users particularly in the area of health information, where people need to know what they can trust.

Q. hOw bUSY IS the PDS webSIte? Very busy – and climbing! The website has seen major growth in the past year and for many people it’s the first place they now go to find out the latest information and advice on Parkinson’s.

In 2008, monthly visits to the site were 25% higher than in the previous year, and we want to build on that even more in 2009.

Q. whAt AReAS Of the webSIte ARe mOSt POPUlAR?The pages that are consistently popular are those that describe what Parkinson’s disease is – signs and symptoms, causes, progression – all those questions that people have if they are newly diagnosed or suspect they may have Parkinson’s.

Information on employment and benefits is used heavily, as are pages on aspects of living with Parkinson’s such as diet, depression, and relationships.

If you look at the numbers though, the discussion forum dwarfs everything else for activity. Since we launched the new forum mid 2008, it’s attracted a lot of new users – and has become a very active community where people can talk wherever they are in the world and at any time of the day or night.

Q. tell US SOme mORe AbOUt thIS fORUm… The discussion forum is a place where people affected by Parkinson’s can share their

with Liz Winthrop, Web Manager, Parkinson’s Disease Society (PDS)

AQ+eDItOR’S INtROIf you haven’t met Liz you most certainly need to, she is addictively funny and strikes me as one feisty lady. I know our web site is in very good hands. Keep clicking and give any feedback you may have to Liz and her team via the contact page

APRIl 2009 ISSUe 45

experiences online and ask or respond to questions from other members. There are separate areas for carers, families and friends and the newly diagnosed – as well as very active social areas. Everyone can read messages posted on the forum – though you need to register to post your own responses.

From feedback we’ve had, it’s clear that for many people, the forum provides a space where they can speak openly and anonymously about living with Parkinson’s, which they may not feel able to do in their offline life.

Someone wrote a while ago that they’d never actually met a person with Parkinson’s in real life – yet online they were an active part of this community, and providing support and advice to others. I think that’s incredible.

Q. whAt’S gOINg tO be hAPPeNINg ON the webSIte IN 2009? A big project we’re working on right now is introducing the capability to take direct debit donations online – and also to enable people to become a member of the Society via the website. This is very important for the PDS, as it will provide new opportunities for fundraising and attracting new members – which after all is what keeps the website running.

We’ll also be introducing audio and video content onto the site which we’re very excited about – and launching a PDS blog. We ran a trial blog at last September’s Annual Branches Meeting which received really good feedback. I see the blog as an effective way of letting people who are interested in Parkinson’s know about our work, and providing a place where people can easily give us their opinions and feedback.

Q. whAt DO YOU lIKe beSt AbOUt YOUR JOb?What I like best is when you see that what you do in your job makes a difference to someone’s life. When I was at the Annual Branches Meeting last year someone came up to me and said Thank you for the forum – it’s a lifeline to me. I was completely overwhelmed, as you don’t often get to hear positive feedback like that. And it makes all the hard work we put in worthwhile.

Q. whAt ARe the bIggeSt ChAlleNgeS? Right now is an incredibly exciting time to be working in technology and communications. New digital products are continually being launched – and keeping up with these is a full time job in itself.

Essentially though –whichever website, social network, blog, mobile, brand-spanking-interactive-new-widget you use, the most important thing is still that the content is relevant, useful and presented in a way which is easy to understand – and that people can find it. Back to the library principles really!

Q. ANYthINg elSe ShOUlD we lOOK OUt fOR IN 2009? It was fascinating to see how the Obama campaign used social media and digital marketing so successfully to get people engaged and actively campaigning for the election.

It shows the enormous potential there is for us to use the web for campaigning, and getting people affected by Parkinson’s to share their experiences and influence

decision makers. This is something we’re keen to explore this year.

Q. APARt fROm www.PARKINSONS.ORg.UK whAt SIteS DO YOU lOOK At eACh DAY?I subscribe to a number of web feeds and alerts from blogs and sites about website usability, search engines, information architecture as well as general technology news. I keep an eye on the charity press to see what other organisations are doing in new media and I also belong to a charity webmaster forum which is useful for sharing ideas.

I’m a news junkie so news.bbc.co.uk is usually open. It has been interesting to watch the explosion of online video content. I’m a fan of internet radio and have discovered some great new bands through recommendations from www.listen.fm. And I couldn’t live without wikipedia to resolve arguments on trivial facts.

Q. we KNOw theRe’S CReDIt CRUNCh ON, bUt whAt IS YOUR beSt ReCeNt PURChASe? I bought a Panic button to stick on my keyboard. It’s red, cost about £1 and doesn’t actually do anything. Still at that price it’s a bargain. And who knows it may come in handy in a moment of crisis…

Q. gUIltY PleASUReS? Guitar music, test cricket, double espressos… and I have recently started smoking. That’s smoking as in ‘hot smoking’ – with wood chips and salmon. If anyone has any recipes I’d be keen to hear from them!

The Parkinson’s Disease Society website is at: www.parkinsons.org.uk

Take part in the forum at: www.parkinsons.org.uk

Contact the web team on: [email protected]

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Back to frontYoung Heroes

editor’s introI was asked ‘do we have anything special’ to go on the back page, it occurs to me that this must be because back pages can get used as a bit of a dumping ground for things that you are not quite sure what to do with! Funny that the page itself is actually just the rear of the front cover the most sought after slot in publishing! Not wanting to fall into that trap I thought that

we would have a special profile page to honour someone whose efforts and support stand out. For the first publication under my wing I have chosen someone I know, but for the next edition please could you nominate someone who has in your opinion made a difference to you.. the ‘face’ will be drawn at random

Our first ‘back to front’ profile is ...

it remains appropriate that the front and back page of this new publication are dedicated to young people demonstrating strength and

determination against adversity...Through one of my vocational activities, I had

the fortune to meet a young man from Germany who has epilepsy. He proved to be one of the most inspiring individuals I have ever come across, and this is dedicated to him and any other young persons whose daily life can be a struggle.

Rainer told me ‘I lost 25 years of my life’ as he suffered up to 15 episodes a day. He broke my heart as he explained that couldn’t make friends – there was no point because he couldn’t form relationships, either because of the fear his peers

had as they didn’t understand his condition, or because he could not remember huge chunks of his day, or the people he had been with. He abandoned any thought of engaging people and put himself into a solitary world by choice... He lived here alone for 25 years...

Fourteen months ago he had surgery and has not had one episode, not one... in front of me I found a man who is waking up to Christmas morning every day, he is making up for his lost life, he has boundless energy, he is passionate, he is experiencing everything he can, he now has his own landscape gardening business...and he is going to dedicate his life to helping other suffers.

Rainer Luckas I salute you....

uP | You+Parkinson’s28

All items in this magazine aim to provide as much information as possible but, since some information involves personal judgement, their publication does not mean that YPN, a subsidiary of the Parkinson’s Disease Society (PDS), necessarily endorses them. While due care is taken to ensure that the contents of this magazine are accurate, the publisher and printer cannot accept liability for errors or omissions. While every care is taken of copy and photographs submitted, YPN accepts no responsibility for any loss or damage, whatever the cause. YPN does not endorse any products or services advertised in this magazine.

© Parkinson’s Disease Society of the United Kingdom, 2009Charity registered in England and Wales No. 258197 and in Scotland No. SC037554.A company limited by guarantee, Registered No. 948776 (London)Registered Office 215 Vauxhall Bridge Road, London SW1V 1EJTel 020 7931 8080 Fax 020 7233 9908PDS Helpline (free) 0808 800 0303 (The Helpline is a confidential service. Calls are free from UK landlines and some mobile networks)Email [email protected] Website www.parkinsons.org.uk

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