Issue number 68

Summer 2016

Inside: They did it! Meet our marathon heroes Contents Welcome…

News Volunteering Families gather So much has Meet our PSPA film stars 6 in Guildford happened since spring PSP Matters it’s been a struggle to fit everything in to this edition. The PSP Association TeamPSPA once again triumphed at the London Marathon in April PSP House, 167 Watling Street West, (see pages 24 and 25). This year we had 72 runners, all with their own Awareness Towcester, Northants NN12 6BX personal motivation for taking part but sharing a single goal – to raise 12 week Telephone: 01327 322410 Hundreds of Fax: 01327 322412 funds and awareness for PSPA. supporters take Email: [email protected] It was an incredibly uplifting day with so many people achieving action Local Groups: personal goals while raising thousands of pounds to support our work. Wendy Crofts, Volunteering There was a wonderful buzz at our post-event party, where jubilant Telephone: 01327 356134 runners celebrated with their proud families and friends, volunteer flag Email: [email protected] 7 wavers, cheerers and support crew. Fundraising: We were excited to unveil our new volunteering recruitment film in Jean Kelly, Fundraising and Events Telephone: 01327 356131 June (see pages 12 and 13). The film not only reflects how much our 10 20 Email: [email protected] volunteers give to PSPA but the benefits they get in return. We rely on Care our volunteers for our ongoing success and we are grateful to you all. HealthUnlocked Focussing on difficulties with vision This online community provides a safe Awareness Week was fantastically well received by our PSPA place where those affected by PSP and community with hundreds of you taking our PSP Red Flags action. CBD can connect with others to share their experiences. This campaign demonstrated what can be achieved when we all pull 24 https://healthunlocked.com/psp Research together and how a simple action can make a big difference. Read our special feature on page 7. London Meet our new Helpline research fellow marathon The PSP Association Helpline and With summer finally upon us, I know many of you are busy planning Runners did us proud Information Service offers confidential fundraising activities. If you need some inspiration there are plenty of information, practical and emotional support to people affected by PSP ideas inside, including details of our first summer fundraising week. and CBD. However you choose to support PSPA, thank you and good luck. Cover: Fundraiser Rory Cunningham is greeted by his proud son after The views expressed in PSP Matters, published four times a year, are not Mon to Fri: 9am–5pm and 7pm–9pm completing the 2016 London Marathon necessarily those of PSP Association and therefore products and services Telephone: 0300 0110 122 advertised or promoted should not be taken as recommendations by the Email: [email protected] The PSP Association Association, who cannot be held responsible should any complaint arise. The PSP Association is a registered charity offering support and PSP Matters is available as a pdf and can be downloaded from our website. www.pspassociation.org.uk information to people living with Progressive Supranuclear Palsy PSP Association Registered Charity Numbers: England and Wales 1037087/ www.facebook.com/ (PSP) and Corticobasal Degeneration (CBD), while funding research Scotland SC041199 Fergus Logan, Chief Executive into treatments and ultimately a cure for these conditions. We rely pspassociation entirely on donations to fund our work. As PSP and CBD are very Design by Skelton Design and printed by Newnorth Print Ltd, Bedford similar, we often use ‘PSP’ as a shorthand for both. @pspassociation Working for a World Free of PSP 2 PSP Matters SUMMER 2016 3 News

Cognition guide updated E are reviewing and These New specialist clinic launched republishing our booklet, publications are A new clinic has been set up for people living with PSP A Guide to Cognition in PSP available free of

and CBD for the Primary Helathcare Team. charge from our A Guide to Cognition in PSP and CBD and CBD in Dorset, Hampshire and Wiltshire. W for the Primary Healthcare Team This is the third and final booklet to be helpline, email republished in our suite of information helpline@ HE clinics will be run by Dr Luke It is also hoped to link the clinic with WORKING FOR A WORLD FREE OF PSP specifically aimed at health and social pspassociation. Massey, who works in Poole palliative care services in the future. care professionals. We also publish org.uk or phone 0300 0110 122. and Dorchester, and Dr Boyd Dr Ghosh explained: “Palliative care American author A Guide to PSP and CBD for Occupational They are also available to download TGhosh who works in Southampton and services are traditionally thought to be Therapists, and A Guide to PSP and CBD for from the professionals section of our Salisbury. Both carried out PhDs in PSP, for end of life care. However, the service visits PSPA GPs and the Primary Healthcare Team. website www.pspassociation.org.uk CBD and Multiple System Atrophy (MSA). has changed enormously and now has E were delighted to They feel strongly that although there the ability to help people earlier in their welcome American actress, is currently no treatment that will cure illness. It is hoped that with time the Dr Luke Massey Dr Boyd Ghosh author and CurePSP Seeking your views the diseases, there is still much that can clinic will establish links with palliative Wspokesperson Kathryn Leigh Scott to our T is important that we regularly return it to us if you are able. By doing be done to support patients. care teams in order to provide as much conditions and make use of the expertise Northants head office with her new book. review our information and support so you will make a valuable contribution Dr Ghosh said: “It is important that support as possible to our patients.” in symptom management already Last Dance at the Savoy: Life, Love and services to ensure they continue to to our work. The findings will help us those with PSP and CBD have a timely developed throughout the region and “The care and expertise Caring for Someone With Progressive Imeet the needs of people living with PSP to understand how PSPA makes the diagnosis and support throughout the nearer to patients’ homes. We also hope Supranuclear Palsy is Ms Scott’s personal and CBD and those who care for them. biggest difference for those living with disease. from many professionals that it will enable us to develop our own “The care and expertise from many account of caring for her husband. To this aim we have recently sent a and affected by PSP and CBD, and is key to improving the research programme and contribute to It is available from bookshops and survey to all those living with PSP and enable us to identify any areas where professionals is key to improving the those of the research networks”. Amazon with a percentage of royalties CBD with whom we are in touch. we can improve our support services in quality of life for patients. We hope that quality of life for patients. The new clinics are based in the Royal going to US-based CurePSP. Please complete the survey and the future. our clinic can contribute to that. We hope that our clinic can South Hants Hospital in Southampton “Although patients may be referred to contribute to that.” on the second and fourth Friday of the many agencies, such as a community month. Spectacles on view in museum physiotherapist or Parkinson’s nurse, As well as clinical support, the clinic will Anyone interested in attending they may not always have a great deal take an active role in research. The clinic is should speak to the hospital doctor simple yet highly effective piece experience problems with fixed gaze, of experience with these conditions. Our part of our PSP Research Network and will who manages their condition to ask if a of optical technology that is leaving them unable to look up or down specialist clinic will enable members of be keen to recruit willing volunteers. referral would be appropriate. Those with used by many people with PSP to eat, read and see the people they the community team to ‘sit in’ the clinic to Dr Massey said: “By setting up this clinic an established diagnosis of PSP or CBD Ais on display in Scotland’s most visited are talking to (see page 10). The prisms learn more about the diseases, while at we hope to both disseminate advances who are not under regular follow up can museum. on the glasses use multiple reflective the same time forging links with the clinic.” in our understanding of these rare ask their GP to refer them directly. We are pleased to have been able surfaces to transfer images through 90 to donate a pair of prism spectacles to degrees, effectively placing the view that the National Museum of Scotland in was previously impossible to see right Edinburgh, where they feature in the into the wearer’s line of sight. The first to see if we could offer any items that Study day will Raffle winners new ‘Technology by Design’ gallery. design for prism glasses was proposed would easily tell their own story from ongratulations to the lucky winners of our spring This is just one of ten new galleries in the 1930s but it was Dr Anne Silk, the display case. The glasses will appear highlight best practice raffle. They are: created as part of a multi-million pound a leading optical expert, who realised alongside iconic scientific artefacts such ORE than 180 health and social care professionals 1st Prize £500: Pamela Fahey, West Bretton, 2nd Prize transformation of the museum, with their potential value to people with as Dunlop’s first pneumatic tyre and have already booked for our 2016 study day. C£250: Roger Landells, Twyford, 3rd Prize £50: Liz Balderson, the new displays aiming to champion neurological conditions such as PSP. Dolly the cloned sheep. The free event will take place at Newcastle United Grimsby (re-gifted as a donation). excellence and innovation to inspire the The application of science to the For more information about prism MFootball Club on 19 October and is open to all professionals Thanks to everyone who bought and sold tickets, together scientists, engineers and designers of everyday lives of people with rare glasses and to request a pair, please with an interest in PSP and CBD. you raised more than £17,000 to support Prof James Rowe’s tomorrow. diseases was an area of interest for the contact our Helpline: 0300 0110 122 or The event is now full but we are taking registrations for our research. There’s still time to enter our awareness week raffle! People living with PSP often museum’s curators, so they got in touch [email protected] waiting list at www.pspassociation.org.uk/2016studyday The closing date is 22 August.

4 PSP Matters SUMMER 2016 5 News Awareness Week Family day hits the right note Flying red flags in Around 85 members of our PSPA family gathered in Guildford in May. PSP Awareness Week UR Family and Friends A huge thank you to our wonderful supporters who took our PSP Red Day opened with an Flags for GPs action during PSP Awareness Week (16 to 22 May). informative talk by ODr John Woodside on research ORE than 6,500 copies of our among these people is key if more into PSP and CBD, before red flags document have individuals are to receive an earlier David Gillet got our tastebuds been distributed to members diagnosis and more timely access to vital tingling with his tasty soft food cookery Maround the UK to hand over to their information and support.” demonstration. doctors and other health and social care From Scotland to the Isle of Wight The afternoon workshops provided professionals. and Northern Ireland to the east coast, an opportunity to hear tips on first We were overwhelmed by your together we delivered flags to local aid, benefits and healthy eating, and response including your phone calls, surgeries, hospitals and Clinical a fun music therapy session ensured emails, tweets and facebook comments Commissioning Groups (CCGs) (see everyone left the event feeling relaxed expressing your positive support for our our map). and uplifted. campaign. “We were delighted our campaign Peter Daniels, our Director of We know GPs often find it difficult to won the backing of so many Information and Support, said it was a spot symptoms of PSP and that many may influential individuals such as health very successful event. not have come across the disease before. decision-makers and politicians, “I was particularly delighted to see Sadly, this often means people receive a and also relevant organisations so many people getting to know delayed diagnosis, or are misdiagnosed. and professional bodies, who were each other, sharing experiences and That’s why we asked supporters to able to help us reach an even wider making new friends,” he said. “Thanks deliver copies of our PSP Red Flags for GPs audience,” Paula added. to everyone involved for making it document in their local area. It lists 10 red “This really does show that such an enjoyable, informative and flag symptoms that may help GPs spot we make the biggest difference positive day.” warning signs of PSP. when staff, volunteers, members and Paula McGrath, our Director of hugely grateful to them all,” she said. supporters pull together.” Communications, thanked everyone for “This year we took a slightly different While PSPA strives hard to raise making awareness week a success. approach, targeting a very specific group awareness of PSP and CBD all year round, Our next Family and “Once again PSPA’s dedicated of people with whom we wanted to our annual PSP Awareness Week enables Friends Day will be held on supporters pulled out all the stops to raise awareness – GPs and other health us all to focus on this important area of Saturday 17 September at support PSP Awareness Week and we are and social care professionals. Awareness our work. The Beeches, Bournville, Birmingham B30 1LS. It is free to attend and bookings will be taken on a first- come, first-served basis. Book online at www.pspassociation.org.uk or call us on 01327 322410.

6 PSP Matters SUMMER 2016 7 Awareness Week

In the news The medical community HANKS to WIDE range of health Your everyone who professionals not only welcomed contacted our PSP Red Flags for GPs comments: We have received really positive Ttheir local media in Acampaign but took the opportunity to Cheryl Williams awareness week, share our message with their colleagues. feedback from our members and including: Thanks to the neurologists involved of PSP. She said: “I put red flags up in supporters. Lesley Flannagan, with our PSP Research Network for GP, A&E and clinic waiting areas so that from Gloucester, getting behind our campaign, many of people read them whilst waiting to be who was Christine Bycroft Joyce Freeman whom promoted it using social media. seen, and could speak to the healthcare I was delighted to read the red flag interviewed on BBC Radio Gloucestershire. of The Jewish Chronicle and The Guide in Rakesh Kumar, a senior physiotherapist professional with any concerns about diagnosis check list for GPs. I am a lay

Lesley, who lost her husband Mike to Prestwich. who coordinates our North Wales Local these early symptoms during their member of the local CCG, which is

PSP, shared her personal experience of Group, organised an awareness raising appointments. Most people I asked gladly well attended by all our locality GPs, Christine and Ray Bycroft, from York, PSP and spoke about the Gloucestershire talk to around 100 trainee, junior and put up posters and gave fantastic support.” practice managers and others. spoke to their local newspaper, The Press, Local Group and our Red Flags campaign. senior doctors, at Bangor Hospital. Rakesh We are also grateful to Southampton- Alison Peasgood about Christine’s delayed diagnosis of Afterwards she said: “It was a wonderful also held an awareness raising stall at based consultant neurologist Dr Boyd PSP and her positive attitude to life. experience and I would never have Sainsburys in Rhyl. Ghosh who is sending a copy with every thought I would enjoy it as much as I did.” Grantham’s Gini Dellow shared her District Nurse Cheryl Williams, who lost clinic follow up letter he sends to his We gave a copy of the PSP Red Flags family’s experience with the Grantham her dad to PSP, went on a mission to tell patients’ GPs, and Dr Martin Turner who for GPs to our surgery when my Joyce Freeman, from Manchester, told

Journal and raised awareness of our Red doctors at nine GP surgeries and three promoted red flags at his Primary Care wife had her regular appointment

BBC Radio Manchester listeners how it

Flags campaign. Gini’s dad lives with PSP. hospitals in Wales about early symptoms Neurology Society workshop. last week. Her doctor said that she took three years for her husband Henry would copy the page for each of the to get a diagnosis of PSP. She also Carol Stanton spoke to her local GPs in the surgery. shared her story with her local edition newspaper on the Isle of Man. Other organisations spread the word Chris Ling UR awareness week campaign in Hertfordshire where a number of won the backing of many other Community Nurse Specialists cover 30 neurological organisations and GP practices. She provided them all with Our GP has photocopied this and From top: Bristol Local Group, Manchester Local Ocharities. a red flag poster and a GP booklet to take given one to each GP in the practice. Group, Leeds Local Group, North London Local Group

to each surgery. My Mum wrote and sent the list of

Thanks to the support of the red flags to all the doctors my dad

Local groups lead the way Neurological Alliance, our red flags were saw over the last four years and who promoted at the Association of British didn’t diagnose PSP! big thank you to all our local Neurologists Conference in Brighton. Lynda Harris group coordinators, who not Andrea Leadsom MP Ben Howlett MP Jenny Knight with Mark Pawsey MP only handed out red flags in Atheir local areas but also shared the Social media I delivered some information at Talking to politicians document with their group members and We harnessed the power of social media our local hospital in Ipswich for the ANY of our supporters met a copy of the PSP Red Flags for GPs and encouraged them to get involved too. Support from the Neurological Alliance to spread our #PSPRedFlags message in professionals and patients too. When with their MPs and told them agreed to take it to his surgery.” Many held events too including Ann awareness week. my mum was diagnosed there, there all about the challenges of Kathryn Timmons, Loughborough Local Pearse, of our Worthing group, who Rare Disease UK; The Brain Charity; Our Twitter posts reached 27,000 was nothing for us to leave with apart

Mgetting a PSP diagnosis and how they can Group Coordinator, contacted Nicky set up an awareness week stand at Genetic Alliance UK and Parkinson’s people during the week and our from the doctor’s information which

make a difference in their constituencies. Morgan MP for Loughborough, who Southland Hospital in Shoreham and Disease Nurse Specialist Association all

Facebook stories reached 24,500 people. wasn’t too clear…now the hospital

Warwickshire Local Group Coordinator tweeted her support. Alison Rose, from our Durham group, promoted PSP Red Flags for GPs to their There were 8,000 views of the PSP Red has that extra bit of information for Jenny Knight met Mark Pawsey MP Andrea Leadsom, MP for South who held an awareness week coffee members. Flags page on our website and more themselves and patients. for Rugby and Bulkington. She said: “I Northants, delivered a red flag to Greens afternoon. Beryl Mayhew, group helper A number of local hospices showed than 200 people downloaded red flag Michelle Staunton explained about the condition PSP and he Norton doctors’ surgery and Ben Howlett in Leeds, posted an awareness week their support too. Helen Miller is posters online. tweeted a photo of my visit. He accepted MP for Bath showed his support too. message on her craft forum. Education Specialist at Isabel Hospice

8 PSP Matters SUMMER 2016 9 Care

Difficulties looking up watch TV. Now consider the opposite effect: your gaze is fixed looking up so and down Other common issues ‘My vision just isn’t right...’ you can’t read or see your meal on the Sensitivity to light: Photophobia Vertical Gaze Palsy is a restriction in table but you can only gaze at the ceiling. is an aversion to bright light. Wrap- “I don’t mean to appear rude, I’m not really asleep, I don’t mean to stare the ability to voluntarily look up and/ “Prism glasses have the remarkable around sunglasses (from the RNIB) or down, which limits what someone ability to transfer images through 90 and I’m really not crying” might all be said by someone living with PSP when or tinted lenses can help. Other tips can see around them. Special spectacles degrees through the use of multiple include wearing a hat (indoors and trying to explain their visual difficulties to others. called prism glasses may help with this reflective surfaces. That will bring the out) and adjusting the brightness difficulty in certain situations. book or the friend’s face right into the on the TV. wearer’s line of sight.” SP damages the nerve centres Retired optical clinician Dr Anne Silk Prism glasses are available free of charge Dry sore eyes: Your GP or specialist in the brain that control eye explained: “Look right down and fix your from PSPA. They should only be used may advise on eye sprays or drops. movements. The most common gaze on the floor. Now imagine that you when sitting or lying down and it is not Pvisual difficulties are: involuntary closure want to have a conversation with a friend Double vision: Wearing a patch safe to walk whilst wearing them. Your of the eyelids (with difficulty opening opposite you but you can’t look up – you over one eye, or taping over one local optician will adjust the sides of the the eyes), an inability to look down, can see their feet but not their face. The lens of your glasses, can help. frame if they are too loose or too tight. an inability to deal with bright lights, same might happen when you want to slow and jerky eye movements, tunnel vision, blurred vision and double vision. Your experiences Due to a reduced blink rate eyes may John Jones around where they did the injections, “Bob’s condition has also become very dry, sore and prone John’s ophthalmologist but it’s been worth it. I don’t have to keep progressed and he’s to infection. Visual difficulties are less picked up that he trying to prise my eyes open. I’d tell others found that TV’s guilty common in CBD. might have PSP. He to consider going for it.” pleasures are not quite Here we take a look at what can be explained: “My eyes are enjoyed as they used to very sensitive to light so Austin Hewitt be and he can’t enjoy done to help. I wear sunglasses over Over time botox reading either. We Keeping the eyes open my prescription glasses. My eyes tend became less effective for arranged to see the eye specialist which Difficulties in opening the eyelids to just close so people think I’m asleep. Austin and his specialist led to Bob being certified ‘severely sight (apraxia of eyelid opening) and forced This is a great relief to my eyes (which get in Northern Ireland impaired’.” closure of the eyes caused by muscle botulinum toxin injection.” adjustments in the injection sites and very sore) but I need to use my fingers to suggested surgery to his The sensory team from the hospital prise them open again.” John’s daughter, eyelids. Austin has had provided the couple with lots of help and spasms (blepharospasm) can be Dr Ling continued: “If the eye closure dosage depending on the previous Dawn, praises the ophthalmologist: “After one eyelid operated on referred them to the RNIB. “Within four troublesome. Botox is often considered problem becomes more persistent, response of the individual.” he mentioned PSP I was able to read up and is now able to raise his eyebrow to days we received our first talking books. for these difficulties as Dr Helen Ling, so the individual is spending most about it before we saw the neurologist.” help open his eye and keep it open. His Bob now has wrap-around sunglasses Senior Research Associate at the PSP of their waking hours with their eyes “The improvement usually ability to do this is affected by fatigue and glasses that are telescopic so he Research Centre, UCL Institute of involuntarily closed, botulinum toxin begins seven days after the Alexander Baird but it has been successful enough for can try and read for a short time.” A Neurology, explained. injection, close to the eyelids and around Alex has had botox once him to plan to have surgery to the other local charity provides memory sticks of “Botunlinum toxin injection is an the eyes, can be given by neurologists or treatment with the and found it helpful. He side too. spoken news. “Every little bit of help, from effective and well tolerated therapy to ophthalmologists to relax the muscles.” maximum benefit in three plans to have it again equipment to advice from professionals, improve involuntary eye closure in PSP. According to Dr Ling, when given now the effects are Bob Bancroft is definitely a benefit and helps ensure to four weeks.” Botulinum toxin is produced naturally by experienced clinicians, most wearing off. “It helps me Bob tried botox and initially it seemed that life’s pleasures can still be enjoyed, by a bacterium called Clostridium patients experience at least 50 per cent Dr Ling advised that there are potential to keep my eyes open. It to help but later sessions didn’t seem even if they are accessed a little botulinum. This has an effect on the improvement and are able to open their side effects (including bruising and was uncomfortable to start with, and sore as effective. Bob’s wife, Carla, explained: differently!” nerves at their junction with the muscles, eyes and keep them opened. droopy eyelids) and these risks should be acting as a blocker and preventing the “The improvement usually begins discussed with the specialist. release of a chemical messenger called seven days after the treatment with the Some people find using one of two Visual difficulties: take action • Seek a referral to a qualified eye specialist (eg ophthalmologist) and sensory disability team. acetylcholine that would otherwise make maximum benefit in three to four weeks,” different types of attachments to glasses, • Raise awareness with those around you so that they understand your difficulties. the muscles contract to close the eyes. she explained. “Injections are repeated known as ‘Ptosis Props’ and ‘Lundie Loops’, • Contact our helpline for more information and to request prism glasses, on 0300 0110 122 or [email protected] Muscle spasms are reduced following every three to four months with some helpful. An eye specialist can advise.

10 PSP Matters SUMMER 2016 11 Volunteering Lights, camera, action – meet our Team PSPA film stars Our wonderful PSPA volunteers are enjoying new found fame.

ORE than 20 of our dedicated acknowledge this and celebrate the local group coordinators, brilliant work they do, why they do it support workers and and the experiences they gain from it Mhelpline volunteers feature in our new became the focus. volunteering video created by filmmaker “Ultimately, I hope the film will act as Thomas Line. a tool to help expand PSPA’s volunteer We launched the two-and-a-half base so they can continue to provide Left: Thomas minute video in Volunteers Week (1-7 the necessary help and support to the Line and below, during filming June) to thank our volunteers for all they families, friends and individuals affected do, celebrate their achievements and by these conditions.” encourage others to join their team. It Paula McGrath, Director of has already proved really popular with Communications said: “PSPA is delighted hundreds of views on our website and with the film which raises awareness of Facebook and Twitter pages. PSP and CBD, gives an insight into the diversity of our volunteers, the difference “The volunteers at PSPA are they make and why volunteering absolutely vital in so many matters to them. “We are incredibly grateful to aspects of what the charity Thomas and to all our volunteers does and the services it who travelled from around the provides to those affected UK to be film stars for the day,” she said. Watch the film by PSP and CBD.” “We had a great time making View the film at www.pspassociation.org.uk/ We are very grateful to Thomas, the video with lots of laughs beextraordinary an independent filmmaker from along the way and plenty of Inspired to volunteer for PSPA? We’d love to hear Northampton, for volunteering his time tea and cake to keep us going. from you. Give us a call on 01327 356134 or email and expertise to make the film for free. The atmosphere of the day [email protected] He explained: “As a filmmaker I really comes across in the final am always striving for new ways to film.” absolute privilege to be involved in the challenge myself as an artist and expand Sadly Sue Wilson, who lived with PSP video,” he said. my own knowledge and experiences. and features in the video, has passed “I hope it will encourage others like I became aware of PSPA through word away since filming, which makes it even me to get involved with volunteering for of mouth, and with it an opportunity to more poignant. PSPA. It was a fantastic day and great to volunteer my skills and expertise for a Scott Smith volunteers with our meet other volunteers. fantastic cause. Manchester Local Group and support “It was a little bit nerve-wracking for me “The volunteers at PSPA are absolutely worker project and is one of the 22 because I am used to being on the other vital in so many aspects of what volunteers who feature in the film. Scott side of the camera. I didn’t appreciate how the charity does and the services it has made films for PSPA in the past. nervous it can make you but I was made provides to those affected by PSP and “I would do absolutely anything to to feel completely at ease and I was happy CBD. For me, creating a film that could raise awareness of PSP so it was an to do it as I was so keen to be involved.”

12 PSP Matters SUMMER 2016 13 Your stories How PSP and CBD haVE affected your lives Grandad’s story United by a flag Keeping Amy Lane, from East Sussex, describes her grandad John’s journey with PSP. Two of our supporters from opposite ends of the land have been brought together by a PSPA flag. active Hazel Smyth, 61, is a retired nurse IS routine was always the same; When we got told that Grandad had who lives with her husband Ray Tuesday with his sister, and PSP, I had no idea what it even meant. The lizabeth windy – location above Ruby Bay, Elie, in Northern Ireland. Friday or Saturday coming to see first thing that came up on Google was Birrell planted for a few days before holidaying couple, Hmy Dad and us, his three grandchildren. the Playstation website. a hand waving Douglas and Linda Gray spotted it whilst AZEL was He would mow the lawn in smart trousers We got in touch with PSPA to get Eflag whilst out on a walking with relatives who live nearby. recently and a shirt, walk up to the town a number some advice and guidance. PSPA were sponsored walk near “It brought a broad smile to our faces,” diagnosed of times a day to buy his paper and incredibly helpful and useful as were the her home in East said Douglas. “My wife, Linda has recently Hwith CBD after initially sweets and often take himself out for a PSP meetings, which we attended locally Neuk, Scotland... then received a PSP diagnosis, so it meant a lot being told she had curry thanks to his incredible appetite to us. Douglas Gray from to us to know that there are ‘others’ out Parkinson’s. for things that weren’t so good for his One time I told a consultant Grandad Uxbridge picked it up there who are doing whatever they can “The scans waistline. had PSP and the consultant had no idea four days later! to help ‘spread the word’.” suggested Parkinson’s what it was. Luckily, I carry PSPA fact cards “It was a lovely Elizabeth Birrell And the coincidences don’t stop Early signs John Lane so I was prescribed The first thing to go was his speech. It but I remember the perplexed look on the surprise to hear that someone had there…Elizabeth and Ian used to run the Parkinson’s was like the words were on the tip of his consultant’s face whilst he was reading it. In the six years since his diagnosis, a lot collected one of the flags and had been Craw’s Nest hotel in Anstruther for over medication,” Hazel tongue but he could not push them out He still wrote on Grandad’s notes that he has changed for us. Grandad has become in touch with the Association,” said 30 years and it turns out that Douglas told us. “Unfortunately of his mouth and when they did come had dementia. a Great Grandad following the birth of my Elizabeth, whose husband, Ian, lived with and his family spent many happy this just made me out, he was very softly spoken. He would I am sure that had Grandad been niece, Eva. His face lights up when he sees PSP. “And it was touching to learn that evenings and Hogmanys at the hotel – so really unwell, to say goodbye mid-sentence and put the diagnosed earlier, we would have had the her or a photo. the people who found it have also been their paths must have crossed before. the point that I was Hazel Smyth phone down mid-conversation. benefit of earlier advice that would have I am due to qualify as a solicitor in affected by the disease.” struggling to walk The next thing that changed was his made life a bit easier for him. September and hope to specialise in Elizabeth is a seasoned fundraiser and swallow, so I came off it and things emotions. He began to cry when he saw Unfortunately, the move into a nursing private client work so that I can help for PSPA and has taken part in the improved again. That’s when the doctors us and started to cry mid-conversation home was not a seamless transition. families plan for the future when faced local Rotary Club’s annual walk from realised that in fact I had CBD.” when talking about something They already had a patient with PSP and with a degenerative condition. Anstruther since 2010 – and over the There was however a rather more unemotional. we thought this would result in better Heart breaking does not come close last few years she has planted flags beneficial result from the initial He also became unkempt which was care. Sadly, this was not the case. We to how difficult it is to watch his decline along the route. misdiagnosis: Hazel was given a so unlike him. He then lost all sense of moved Grandad to where he is now and but I take comfort in the thought this “I want to raise awareness whilst wristband stating ‘I have Parkinson’s, time and would often go wandering in he has a visitor most days. article may help others and their families also raising funds,” adds Elizabeth. please give me time’. She has found “It’s crucial that more people hear the early hours. A catalogue of falls and Today through a difficult time and that through this really helpful in airports or other hospital visits made us all realise that him Grandad is only able to speak a few words my work, I can also help families in a time about PSP and CBD, so by leaving a wee situations where she might perhaps get moving to a nursing home was inevitable. flag I hope others will pick them up and unable to walk without assistance. of need. Douglas and Linda Gray a little flustered. The diagnosis The falls have declined due to his mobility Raising awareness of PSP has now and then find out more when they get “People see the wristband and quickly A number of consultants, some declining. He always has a terrible become a mission for me; early diagnosis home. I also hand out information cards “We visit this area every year,” added recognise that I may need help and that supposedly the best neurologists in the cough and his swallowing is a significant will help raise awareness of what can whenever I can, especially at doctors’ Douglas. “I hope next time we’ll be able they need to be patient,” Hazel explained. South East, and GPs either missed the problem although his appetite remains only be described as a terrible illness and clinics and hospitals.” to meet up with Elizabeth – see if we “It takes the pressure off.” diagnosis of PSP or did not know what incredible (and he still often has seconds encourage funding towards finding a cure. The flag had been at its lofty – and recognise each after all this time!” The wristband is available from the PSP was to diagnose it. Sadly, a very for pudding!). Grandad may not act the same but the Parkinson’s UK online shop. private man had to explain his symptoms He seems to be at his best when smile and wave when he sees us and the Make your voice heard Hazel says she tries not to think over and over again, was subjected to he looks his best; clean shaven with few times when he manages to tell me We welcome potential contributions for future issues. Material may be edited prior to of herself as unwell. “I think the best numerous tests and, at times, we were all aftershave, haircut and nails clipped. My he loves me make me realise that, deep publication. Send your contributions to [email protected] approach is to keep doing as much as given false hope that we had some idea sister, Grace, is a beauty therapist and is down, PSP has not taken everything away or write to PSP Association, FREEPOST RSLR-ZTGA-HHAU Towcester NN12 6BX you can – I try to get on with things but what he was facing. often on hand to spruce him up. from him. just go a little slower.”

14 PSP Matters SUMMER 2016 15 Your stories

Dream big and then dream a little more Mum’s ‘dignity and grace’ Following her late father’s advice, Liz Lockhart from Chepstow Anne McDonough from Newton-Le-Willows lived with PSP for a number of years before passing away in February. achieved something way beyond her dreams. ER daughter Susan Tickle as an opportunity to educate the doctors shared with us some memories and nurses there about PSP – many of agreed to write this to show people run, to be able to raise funds for a world of her amazing mum and paid them hadn’t even heard of it. She would that you can do so much more than free from PSP. I’ve barely won as much as Htribute to Anne’s inspiring courage and also chat away about it to people she you ever imagine possible. My Daddy a box of talc in a church raffle. There was positivity. came across in everyday life. Ialways said to us as children ‘dream big, no way I would win… “Mum always dealt with this illness Mum did her best to maintain her and then dream a little more’. He didn’t with real dignity and grace. She never independence and continue to enjoy believe anything had limits – even dreams. “I sniffed through the tears, complained, never let it get her down life. She and my stepfather George had I do not have a history of athleticism. that no matter how hard but instead did everything she could a wonderful time on a cruise last year I mean yes I’ve had gym subscriptions, to learn about PSP. She armed herself and despite her increasing weakness and and I’ve swam, and got off the bus a I was finding it, it was with information and then made it her difficulty walking she was determined stop earlier. But the next Paula Radcliffe nowhere near as hard as Dad mission to raise awareness. that they would return to their beloved I was not. Oksana and Norman Every trip to A&E after a fall was treated Greece this summer to sit on the beach About 18 months ago I had to give up had found suffering from PSP.” in the sunshine. She was facing up to the my subscription to the ladies only gym Fast forward to 10 days before need for a wheelchair and adaptations I loved. To alleviate the stress of home Christmas. Yes, you guessed it, I was Wedding bells to the house, but in the midst of it all she educating two teenagers I decided successful! I had exactly 12 weeks to go ongratulations to Oksana was still busy planning a holiday! instead I would run. It was cheap! I mean from my rather lame pootle around the and Norman Johnson who Sadly mum didn’t make it to that last it couldn’t be that difficult. I probably lanes to running 13 miles. I was petrified. were married at the Town Hall in trip, but we knew that she would have wheezed my way around a kilometre or My rather long-suffering friend CDewsbury, West Yorkshire, on wanted us to continue to raise awareness two once a week roughly and felt very stepped into the breach. Found me a St Patrick’s Day. of PSP. Everyone at her humanist funeral smug. training plan, and introduced me to chi The couple were joined by many family was given leaflets and information – they A very special friend kept badgering me running to minimise skeletal impact. I and friends including members of our all left the service with an understanding to sign up for a half marathon. Her reason worked my socks off. I sniffed through Leeds Local Group and PSPA Specialist of what this illness involves. I will carry was I could raise funds for PSPA, she felt the tears, that no matter how hard I was Care Adviser, Jenny Reynolds. on where my wonderful mum left off, I definitely had the ability. I thought she finding it, it was nowhere near as hard as Guests then celebrated with the educating anyone who is willing to was plain bonkers. There was absolutely Dad had found suffering from PSP. couple at a reception at Fieldhead Court, listen!” no way in this lifetime, or the next, I was Race day was freezing, with storm force Anne and George McDonough where Norman, who has PSP, lives. running 13 miles. Every now and then winds and biblical rain. I was probably she’d mention it, I’d pour a glass of wine more scared than I ever have been in my Liz Lockhart and laugh it off. life, but I set off undeterred. I completed In my early teens I’d been diagnosed and physiotherapy. Everyone had a the course soaking wet, and absolutely Calming creativity with first one joint condition, then different idea, but the general gist was I ecstatic in 2hrs 49 minutes, raising £507 Creating greetings cards has proved to be a another; then someone had the bright had a pretty dodgy skeleton. for PSPA. Way, way beyond my wildest successful pastime for one of our local group idea of reconstructive surgery on my In late November my beautiful friend dreams. members. knee. It predictably backfired, and I spent got in touch again. Athletics for a Better Dad and Mum had plans to visit all OB Laver, who regularly attends the Gloucester a year walking with either sticks, or in a World had 500 spaces for the World manner of places in the UK when Dad meetings with his wife Mary, took up the hobby after wheelchair, culminating with a month Marathon Championship in March. To bid retired. Sadly PSP cut that dream short. being diagnosed with PSP in 2012. in the local orthopaedic hospital being for a place you had to say how running I now hope to visit as many as possible RMary said: “He enjoys mixing up the colours and finds taught how to walk again. would change you, and change the/your completing half marathons or 10k races, painting calming.” Right into my mid-thirties I bounced world. She gaily announced she’d apply raising awareness and hopefully more Each card is unique and sales have been donated to PSPA. between orthopaedic, rheumatology for me. She’d say that I would learn to funds for PSPA as I go.

16 PSP Matters SUMMER 2016 17 Care Research network branches out Our PSP Research Network’s core study, known as PROSPECT, is now fully up and running across diagnosis across the board.” Medical Research Council and the NHS’s a platform for future clinical trials as seven centres of expertise nationwide. As well as dramatically stepping up the pace and focus of Meanwhile our campaigning activity at National Institute for Health Research” Dr ever-increasing funding and awareness Holyrood last year attracted the attention Woodside told us. “Now we are starting provides the momentum to edge us PSP and CBD research in the UK, the project is now providing a foundation for wider studies. of the Scottish Chief Scientist Office, who to establish our cohort of PROSPECT closer to the development of potential subsequently agreed to share with us participants, we have a strong case for treatments. UR network provides a Clinical Gathering momentum the funding of a Scotland-based Clinical gaining access to these funding sources Dr Woodside said “PROSPECT is collaborative framework, trial As PROSPECT gathers momentum it Research Fellowship. Newly appointed in future.” addressing the key aspects of these modelling allowing centres with a is growing in scope, even reaching Dr Diane Swallow will recruit participants The PROSPECT team’s ambitions are conditions, from genetics and disease Ostrong history of PSP research to out into Europe (see panel), and its to the cross-sectional arm of PROSPECT growing already. In addition to the markers to how we track progression. Tracking Clinical share data and samples in the quest while examining the issues surrounding seven core centres, eight secondary Thanks to this study, our knowledge of progression measures potential impact is increasing. The for earlier diagnosis and effective structure laid down by our research diagnosis and care for people with PSP centres around the country are recruiting PSP and CBD will dramatically increase treatments. and CBD in Scotland. participants to the cross-sectional arm of so that we can build a more complete Participants network has provided a template for The network’s chief investigator, other studies and has attracted the “We are now seeing a much bigger the study, with plans for more. picture and create an accurate disease Prof Huw Morris, Consultant attention of other funding bodies. drive for neurological research from Ultimately, our hope is that the work model for future trials.” Neurologist at University College Disease Genetics the major funding bodies such as the of the Research Network will create markers The MSA Trust has committed London and the Royal Free funding to allow the researchers and National Hospitals, believes Pathology to include people affected by teamwork is essential. “Our group Multiple Systems Atrophy in a parallel Swedish funding for sister study brings together leading experts from study, scaffolded by the PROSPECT sister study to PROSPECT that “Patients recruited to existing UK Research many areas of biomedical research” infrastructure and using some similar focuses specifically on CBD the study will undertake Network centres, where he explained. “The rarity of PSP and Aspects of our Research Network Study protocols. is spreading its wings into a structured neurological participants will also join CBD necessitates collaboration and we “It is important that we build a picture AEurope thanks to funding from Swedish assessment and will be the main PROSPECT study believe that the network can address data that will enable the researchers to of related conditions that all fall under organisation CBD Solutions. invited to donate blood with more in-depth tests. some of the barriers to research and make new discoveries based on the way the umbrella of ‘atypical Parkinsonism’ The European Registry of CBD and samples, with follow up Dr Lamb told us: “CBD providing better care.” that the conditions change over time. and tease out their subtle differences” CBS (corticobasal syndrome) is a after a year” Dr Lamb is a rare disease so pan- Meanwhile 39 people with PSP and nine explained Dr Woodside. “It is this multi-national collaborative study. Like told us. “The protocols European recruitment is “It is important that we with CBD, from Devon to the north of detail that will be critical in improving PROSPECT, it is coordinated from the followed by the European extremely important as it England, have contributed to the ‘cross- build a picture of related Institute of Neurology at University study, including the helps us identify a greater sectional’ part of the study, completing College London and PROSPECT was neurological assessment, number of patients. To conditions that all fall under questionnaires and giving a one-off Dr Ruth Lamb used as the basis for its development. were developed from our knowledge this will blood sample at their GP surgery. the umbrella of ‘atypical Study Coordinator Dr Ruth Lamb some of the existing PROSPECT be the largest study of CBD and CBS Eleven healthy participants have signed explained: “Our primary aim is to protocols and will allow us to collect ever carried out and we predict that Parkinsonism’ and tease out up too, providing essential data and establish a cohort of clinically well- comparable data.” it will play a key role in facilitating the samples for comparison, but there’s a long their subtle differences.” defined patients with CBD and CBS that The project aims to recruit at least identification of disease markers while way to go, as Dr John Woodside, Clinical will be available for future therapeutic 150 patients over two years from more potentially providing a platform for All seven core centres are now busily Research Coordinator for PROSPECT, studies. than 20 sites across Europe, plus the future clinical trials.” recruiting study participants: nine explained: “Our target is to enrol 98 people with PSP and six with CBD have people with PSP to the longitudinal study signed up for the ‘longitudinal’ arm of and 98 controls. With more data collected Get involved: the study. This involves visiting one from more people, greater comparisons To find out more and to see if you are eligible to take part in PROSPECT, contact: Dr John Woodside, Study Coordinator: of the centres several times over the can be made to give clearer insight as to [email protected] or 020 7679 4272; or PSPA: [email protected] or 0300 0110 122. course of a few years providing valuable how these diseases develop.” Dr John Woodside

18 PSP Matters SUMMER 2016 19 Research Volunteering

Meet Edwin, our new PSPA-funded Offering a listening ear Sara Koe Research Fellow UR Helpline volunteers continue Dr Edwin Jabbari is just finishing his general medical training as a junior doctor. to do amazing work, providing Fortunately for us and the future of PSP research, he will undertake our research an essential out-of-hours service. First volunteer OEach volunteer spends around two to four fellowship rather than ploughing straight on into a specialist registrar post. Hello and hours per month responding to a range support workers of calls and enquiries including what URfirst volunteer support workers DWIN will gain valuable research neurologists were making diagnoses data from our PROSPECT study. He said: goodbye… services are available, where to find a have successfully completed experience and the specialist based mostly on their encounter with “PSPA’s promotion of PROSPECT is an E are delighted to suitable holiday and, of course, providing their training and are now knowledge and breadth of skills the patient, by taking a history and excellent example of how a patient welcome two new group a listening ear and emotional support. Omaking a difference for people affected Ethat will make him an enormous asset to examining them” he told us. “As I’ve organisation can communicate research coordinators to our Jackie Hill, by PSP and CBD. PSP clinical research in the future. gone through my training, I’ve realised participation opportunities to people Wvolunteering team this year! one of the team, The support offered through this that the sub-speciality within neurology living with the condition.” In April, Jo Catterall (pictured left) explained: “When project includes one-to-one contact that captures this most is movement became the coordinator for our a call comes through home visits, phone calls or email, disorders. Aside from the challenge of “Diagnosing PSP remains a Brentwood group. Jo is a carer for her through you depending on individual need. diagnosing and treating conditions such challenge but on the whole mother who is living with CBD and was forget all your This exciting new project is currently as PSP and Parkinson’s Disease, their already a member of the group. She is own concerns offering a service limited to certain areas chronic nature means that you get to we are getting better at this. taking over from Liz Williams (pictured as you listen and to those who are newly diagnosed, form longstanding bonds with patients What we still really struggle above right), who has stepped down intently to the living alone or facing a crisis. As we recruit and their families, which ultimately leads from the role after three years. Despite person on the and train more volunteers into this role, it to more sensitive and individualised care.” with is giving an early relinquishing her role, Liz is reluctant to other end of the will become more widely available. During his time as the Sara Koe indication of how quickly say goodbye to the friends she has made phone – it feels If you feel you would benefit from this research fellow, Dr Jabbari will undertake and has promised to continue attending good knowing type of support, please get in touch with a study which he hopes will contribute and in what way the disease the meetings as often as she can. that you have our Helpline, on 0300 0110 122, who will to tangible benefits for those diagnosed will progress.” In Doncaster, Linda Greendale been there to support someone in need. be more than happy to talk to you about with PSP in years to come. welcomed members to the first meeting “What’s two hours every few weeks? what we can offer. He explained: “Diagnosing PSP remains Taking up the fellowship in August, at a new venue. Linda, whose husband It’s nothing, but the difference it can If you are interested in our support a challenge but on the whole we are Dr Jabbari hopes to spend his three Harry is living with PSP, organised the first make to someone who needs support is worker role, or other volunteering getting better at this. What we still really years in post making some important meeting at Waverley Community Centre, immense.” opportunities, the volunteering team struggle with is giving an early indication contributions to PSP research, before Dr Edwin Jabbari Balby, Doncaster, in June. We are looking for more volunteers to would love to have an informal chat with of how quickly and in what way the starting his neurology registrar training. For information about our group take on this challenging role. If you think you. Contact Wendy or Nicola on He will be based at the Institute of disease will progress, yet this information “During my time as a junior doctor in meetings please see our local group you could be a ‘Jackie’ please get in touch 01327 356134 or email Neurology, University College London is vital for patients and their families who the movement disorders team my over- pull-out. with the volunteering team. [email protected] where he trained both as a medical have already been through the anxiety of riding feeling was one of frustration, student and junior doctor, working the diagnosis itself. My research will look both at the lack of treatment options and alongside leading experts in the field into ways that we can use MRI scans, the lack of clear prognosis we could give Getting to know you such as Prof Huw Morris (once a PSPA lumbar puncture and genetic testing patients and their families,” he said. eeting members and volunteers at our Family and quality time with you over a coffee and (hopefully) cake! fellow) and Prof Henrik Zetterberg. to reliably predict and track disease “Getting this research post has Friends Days and other events throughout the year In turn, we hope you will enjoy meeting us: putting faces to Neurological conditions grabbed progression. This approach also has the certainly made me less frustrated and gives an incredible boost to staff at PSPA. names and hearing more about our roles. We will be posting Dr Jabbari’s attention when he was potential to identify new targets and more driven to address these issues! I’m MHowever, we are conscious that these opportunities are details of staff visits to local groups on our events page. a medical student. He has become measures for trialling new treatments.” looking forward to meeting many more limited. So this year staff members are planning to attend as Contact Nicola on 01327 322416 for more information. passionate about PSP and similar Dr Jabbari’s work will make use of people living with PSP, hearing their many of our local group meetings as we can. For more information on all local groups visit: conditions. our Research Network infrastructure, stories and hopefully having a positive We are looking forward to meeting and spending some www.pspassociation.org.uk/localgroups “As a student I was fascinated by how as his project will involve patients and impact on their lives.”

20 PSP Matters SUMMER 2016 21 Volunteering

Introducing... Local groups – they would like to speak. We’ve had your news and pictures Joan Weatherington – Sheffield group speakers from environmental control, rranging regular speakers for good to have professionals along who a speech and language therapist, an the Sheffield group meetings can answer their questions too. It’s a occupational therapist and even a has proved a successful great way of passing on information and psychologist, who inspired a lot of Aapproach for retired physiotherapist, a benefit to all the group.” questions! Joan Weatherington. Joan has also called on contacts who “It’s a very friendly group, they love Joan, who has coordinated the helped support her husband, Keith, who meeting each other and have got to meetings since March 2015, has used her died from PSP in December 2013. She know each other very well. I think the former professional contacts to invite a said: “It is a way of helping members to members enjoy the friendship they get range of healthcare professionals to share find out about things that they might through the group. Getting to know their knowledge with the group. not know otherwise. I feel very satisfied other people with the condition and Congratulations to our Leeds Local Our new Worthing Local Group got off She said: “The members are more than that they are getting the help they need. knowing they are not on their own is Group (pictured above) on recently to a great start in April when more than happy to just chat to each other but it’s I always ask the group members who Joan Weatherington very important.” celebrating its third anniversary. 20 people attended the first meeting. Members marked the occasion with Group coordinator, Ann Pearse, gave a home-made cakes supplied by Group warm welcome to new members at The what happened at the meeting. “Volunteering with the local group Coordinator Pam Bower and a lively Durrington Community Centre. Marisa Brockton – Wimbledon group “We see ourselves as facilitators. We has been more work than I thought it discussion about new fundraising ideas. HE organisation of our are not experts, we are just there to let was going to be but it does feel good Wimbledon group has been a people talk and discuss issues.” to know you can really help people. Tim Allen, our Middlesbrough Local successful three-way split ever Marisa acknowledged that Sometimes people get upset or Group Coordinator, gave a talk about Tsince it began back in 2012. volunteering with a local group can angry while others just want to share PSP to Stockton Unitarian Church. The smooth-running teamwork often be demanding and, at first, something but we all understand. Church members kindly fundraised for of Marisa Brockton, Jeanne Connelly she wasn’t even sure what would “You forget that people come in PSPA for a year and Tim’s mam, June and Shauna Mackenzie has ensured be expected of her, but that it has (and often) don’t know anything about Allen, together with group member Irene the group has provided a welcoming developed into a worthwhile and PSP, so it feels positive, being able to Ridgeway, were delighted to collect a meeting place for people living with PSP rewarding experience. help them, talk to them and create cheque for £511. June and Irene are both and CBD in the South London area. a helpful environment for them. It is living with PSP. As part of our ongoing series of “Volunteering with the good to create this space where people features focussing on our local group can have useful talks and share little local group has been more coordinators, we will be talking to all gems of information with each other. Regional meetings three Wimbledon volunteers in turn. work than I thought it was I’m pretty sure everyone goes away (SCA) for the central region, Liz Burr, was This month the spotlight is on Marisa, Marisa and her dad Brian learning something new and getting e have recently held two going to be but it does feel also on hand to answer any questions. who first became involved with PSPA doing something. The meetings are very something out of it. regional meetings to give More than 15 people attended our when her father, Brian Robertson, was laid-back, there is no formality. We just good to know you can “It is nice to think I am doing families affected by PSP the regional meeting in Poole, Dorset diagnosed with the condition. chat over a hot drink and share stories something proactive in my dad’s Wchance to meet staff and find out more really help people.” in June attended by consultant She described how the combined and information. memory and I feel like I am doing about PSPA. neurologist Dr Luke Massey and Jane participation of all three volunteers “Shauna makes chocolate brownies She said: “I didn’t know if we were something really valuable and We welcomed more than 15 people Stein, SCA. and a steady supply of ‘epic’ chocolate for every meeting. They are pretty epic expected to know anything medically. I worthwhile. PSP is an illness where to our recent Worcestershire regional brownies has helped to contribute to and people do come along for them - wondered what would be the point of people need help today and meeting. Regional meetings take place in areas the meetings. but also for the companionship! And the group if it couldn’t offer that. But I volunteering with a local group Held at Lower Smite Farm in Hindlip in where we do not currently have a local She said: “It works really well with the if people can’t make it, Jeanne always quickly realised it is about providing a has achieved that – giving people April, the session included information group. The sessions offer people a chance three of us. There is someone always follows up with amazing summaries of space for people to meet. emotional support now.” about the Association and our local group to meet staff, find out more about our work, network. PSPA’s Specialist Care Adviser and experience a local group meeting.

22 PSP Matters SUMMER 2016 23 Fundraising They did us proud! A massive thank you and congratulations to our 72 London Marathon runners for their incredible achievement.

rom novice to experienced runners, them a rousing welcome back at our at it throughout for motivation and it they all saw months of gruelling post-race reception. really put everything into perspective! training pay off to raise tens of We were delighted to meet so many “Running for such a personal reason Fthousands of pounds to support our work runners, their proud families and friends was the best boost – especially at those in our biggest fundraiser of the year. at our reception, to thank horrible late teen miles.” them in person, hear their “I felt both humbled and inspirational stories and celebrate their success privileged to be there with together. the other runners and Justin Johnson ran in memory of his all the volunteers, it was step dad, along with London Marathon 2016 Roll of Honour brilliant!” Matt Ironside and Sam Potter. Hani Abidi Matthew Heaven Richard Piggford Laura Brown Gabrielle Hine Sam Potter The event just wouldn’t be the same He said: “I felt both Sarah Buxton Nikki Hodges-Smith Jeremy Ramsden without dozens of energetic cheerers, humbled and privileged Darren Chappell Victoria Holland Edward Reed who willed our runners on every step to be there with the other Teresa Connolly Joanne Homes Alex Ridout of the way around the course and gave runners and all the Luke Courtney Charlotte Howarth Amanda Salter volunteers, it was Edward Craig Matthew Ironside Viraj Sanghai Rory Cunningham Joe Jennings Gary Sloman brilliant! I felt so Paul Davis Justin Johnson Helen Sprason proud wearing Katie Davis Rebecca Jones- John Sutton my vest, I kept Thomas Davies Reading Lindsey Thomas Mike Jump looking down Amy Decaro Mark Thomas Elizabeth Eggleton Rhian Lees Sebastian Tusa Charlotte Elms Heather Martingell Tristan Tusa James Evans Andrew McAvan Alan Wadsworth Feeling Nick Fellows Clare McCarthy Gary Walker Paul Fleming Anthony McCann Josh Walker inspired? Sarah Fletcher Elaine McGlynn Sarah Walker We’d love you to Joseph Gilman David Meer Emma Wasley join #TeamPSPA at Terry Gilmartin Mickael Metayer Steven Watson Wilma Milton next year’s London Suzanne Glowala Mike Wenn Sabrina Monforte Marathon. Jennifer Gunn Sally Williams Jema Hart Joanne Moore Matthew Woodruff Sign up now www. Dan Heaven Annette O’Donnell Elen Woodward pspassociation.org. Chris Overland Justin Johnson uk/londonmarathon

24 PSP Matters SUMMER 2016 25 Fundraising Hope’s adventures Upcoming events Hope, our awareness-raising mascot, now has her own diary. August Fundraising Week Here she will tell you all about the places she’s been around the world, and the people she has met... OIN in the fun between 13-21 young ones involved, and as it’s ‘schools August, and raise as much as you out’, have fun with sack races, egg and can for PSPA! spoon races, coconut shies, and three- JFundraising comes in all shapes and legged races. No matter what your age, Summer is finally here! I am so excited join our amazing marathon runners. I sizes, so no matter how big or small, cake is sure to be a favourite, so gather for the big PSPA events such as was, quite simply, brilliant, and I smashed we’d love for you to take part in August a group of friends and enjoy a bake sale, August Fundraising Week (13-21 Aug), my PB by over an hour. It took a lot of Fundraising Week. Host a charity or coffee morning! RideLondon-Surrey 100 (31 July), and the training to get so fit, and the taxi ride barbecue for friends and family, get in No matter how you choose to help Great North Run (11 Sept). Plus it isn’t halfway through really helped. When I the Olympic spirit and enjoy a games PSPA, we will supply you with all the The support we receive from our long until the Olympics begin, and I can reached the PSPA reception at Carlton day or sport match, or sit back and relax materials you need to make your event fundraisers throughout the year is finally show off my pole vaulting skills. House Terrace, I had a lovely and enjoy a wine and cheese evening – stand out. Ask us for balloons, flags, always amazing. For one week only, we I’ll need a rest after all that excitement, massage, a cup of tea, and a nice perfect for a summer’s night. T-shirts, fact cards and leaflets, and we’ll can all come together to make 2016 maybe I’ll even need a holiday, and I sandwich (no salmon, though). It would also be great to have the post out them to you straight away. unforgettable. am so very ready to be swept away To see so many PSPA supporters to exotic, and not so exotic climes was just fantastic – I am so proud Time to Strikeback! all around the world. I have my paws of our runners, and the astounding crossed that a family will take me with efforts they put in to raise as much A royal run A jolly day out them and take lots of photos of me for funds and awareness as possible. ‘ T was a wonderful race. I really the PSPA community to see. I hobbled home a tired but very enjoyed it’– Erik De Haan, Team PSPA It has already been a fantastic year so happy bear. Runner 2015 far. I have been to the jungles of Costa IAutumn may seem a while off yet, but Rica and down to London to not for Team PSPA runners in this year’s Royal Parks Half Marathon! London’s most scenic running event Strikeback against on 9 October, is a special occasion, and PSP and CBD we wish all of our runners the very best UR new Strikeback Funds have of luck. Research been created for everyone who Join Team PSPA, and be part of this One of my highlights so far this wants to strike back against PSP iconic half marathon. year was my visit to Cambridge My Travels Oand CBD. University where Patri Vazquez My passport has hardly been HAT better time to start They are easy to set up, just name your Rodriguez, a student working on a put away so far this year. I thinking about Christmas fund, register it and you’re ready to go! PSPA-funded project, showed me had an amazing time in La Palma taking in some spring Great North than the height of summer? You can channel your fundraising energy, around the labs. I had a scan, had bloods taken, and gave a sunshine, then it was off to Costa Rica for a tour of the WApplications for this year’s wonderfully either on your own, or with your family, talk on the importance of funding for research into PSP and country. I rode a horse through the dry forest, zip-wired Run first jolly Santa Run are now open. This is a friends or colleagues to help fightback CBD. She was a lovely host, and I also got to practice my through the jungle, met toucans, poison dart frogs, HIS year Team PSPA has charity perfect event for groups of family and against these dreadful diseases. impeccable Spanish. Merci... oops, I mean gracias, Patri! sloths, and howler monkeys in the rainforest, before places in the Great North Run for friends to take part. With distances of All the money in your Strikeback Fund a close encounter with some Cayman crocs on the the very first time. We wish the both 5k and 10k, the race is open to all will be recorded in the one fund so you We would love to know where Hope has travelled. Send Caribbean coast. I dipped my paws in the Pacific, took Tbest of luck for 11 September to Alistair abilities, plus you get a free Santa suit! can know how much you have raised. your photos and details to [email protected] in the San Jose skyline, and spoke to many locals about Burnett, Harriet Shambrook, Kelly Ruddy, To take part in any of these events, or Email [email protected], Buy your own Hope at www.pspassociation.org.uk/shop PSPA. All that and I only needed one diarrhoea tablet! Vanessa Procter, Antoinette Oglethorpe, to find out more call us on 01327 356132, call 01327 322419 or go to Lisa Bird, Thomas Whittle and Beth Wyld. or email [email protected] www.pspassociation.org.uk/strikeback

26 PSP Matters SUMMER 2016 27 Fundraising

A runaway success he sun shone on what was an Those cheering the runners on were Sugar-free fundraising amazing day of running in the entertained by the many stalls and South Downs on 22 May. attractions that made the day even more T special, including cake sales, raffles, a “I’m blown away with all barbecue, and even bouncy castles. The event came on the final day of our the positive feedback, and PSP Awareness Week, and every runner it looks like that they all was handed a goody bag complete with PSPA fact cards. want the event again Ken said: ’I’m blown away with all the next year!’’ positive feedback, and it looks like that Triple challenge they all want the event again next year!’’ hrissie Coyle, from Brighton, Maya. Sarah and Zachary Luton Christian Fellowship Friday Night Club Organised by Ken Finlay, whose wife Thanks to Ken, around 500 more people completed three challenges in Mary lives with PSP, over 500 runners now know about PSP and CBD, and we three consecutive months, and F you thought running a marathon who ran a half marathon for the family’s managed to raise an extra 50 pounds, took part in the event, with races taking are very grateful to him, and his team of Craised nearly £350 for PSPA! was tough, then how about giving up campaign, and the Luton Christian and this all added up to £225.55.” place over 1km, 5km, and 12km. volunteers. In March she abseiled down the chocolate, sweets, and biscuits for 365 Fellowship, particularly Victoria Joyner The challenge ended on 9 May, on Spinnaker Tower in Portsmouth, in April Idays! who runs the kids’ Friday Night Club what would have been Gerald’s 71st she ran the Brighton Marathon, which For a whole year, Sarah Robinson (FNC) there, the Robinsons raised over birthday, and to mark the occasion the she followed with a Tough Mudder from Luton and her children Maya, 12, £4,000! family enjoyed a meal out with plenty of event in May. and Zachary, eight, went without their Victoria said: ‘’The other children at chocolate pudding for dessert! Of the Tough Mudder, Chrissie said: “The favourite snacks to raise funds for PSPA in FNC have been giving their spare change Sarah said: “Hopefully this money can orange wires give off little electric shocks memory of Sarah’s Dad, Gerald Marshall, at the end of every Friday night as they help PSPA in some small way. We would and made me fall over which I thought who sadly passed away last July after have been so inspired and amazed by have been lost without you.’’ was very funny. I liked it much more than living with CBD. Maya and Zachary’s commitment. On A huge well done and thank you to the the marathon, and most of it I enjoyed!’’ Supported by Sarah’s husband Simon, the last Friday we had a onesie night, and Robinson family. Chrissie is inspired to support PSPA by her mum Mo Lumsden, who was diagnosed with PSP in 2012. Gearing up for RideLondon – Surrey 100 HIS year sees Team PSPA take Susan Peacock, lived with PSP for seven on the Prudential RideLondon- years which was sad and painful for us. Bar Mitzvah marvel Surrey 100. Our riders will see city PSPA was very helpful at the time, and hirteen year-old Noah with his mum, walked 25km along the Tstreets give way to country lanes before we have been so impressed by how Shulman-Miller from London Thames crossing 16 of its bridges, cycled looping back into London to cross the much it has grown as an organisation in decided he would celebrate his 23km around Ashfield Cycle Circuit, finish line at The Mall. terms of providing support and advice, TBar Mitzvah in May by supporting five taken part in an 18km stadia challenge, A number of our cyclists will be and in its ground-breaking and very charities, and PSPA was lucky enough to been on a 16km walk to 30 of London’s pedalling for loved ones lost to, or living exciting research.” be one of them. iconic landmarks, and walked a further with, PSP. They include: Darren Ford from Haywards Heath, We are close to Noah’s heart as his 13km from Bevis Marks to New North Dave Trevaskus from Weston-Super- West Sussex: “My dad lives with PSP, and mum, Sarah Miller, lost her mother, Judy, London Synagogue. Mare, Somerset: ‘’My father-in-law lived in the last 12 months the symptoms to PSP. After all that he still had the energy with PSP and passed away three years have progressed. Dad will be with me in Noah decided he would take on nine to take part in the 5km Great Ormond Noah Shulman-Miller ago. This is my small way of showing my mind for every pedal stroke during big challenges to raise funds, and so far Street Hospital Race for Kids. With ascents are all so proud of Noah’s efforts, and his support for my wife’s family and many that day.’’ he has raised over £3,000! of Mount Snowdon and Scafell Pike commitment and determination to help others.” Best of luck to all our cyclists for 31 Supported by his family and friends, planned, his amazing fundraising journey those in need are admirable. Well done Clare Sellors and Emma Bond from July. It is sure to be an unforgettable Noah has taken part in a 2km swim is sure to hit the heights once more. We Noah! London: “Our mother and grandmother, journey. Dave Trevaskus

28 PSP Matters SUMMER 2016 29 Your fundraising

Half marathon Cakes into cash Cheque mates Marathon men More marathon men Muddy money heroines... Once a month Duncan Shephard holds We were delighted to welcome Thank you to Ben Skinner and Ed Ameer Ed Morgans, Trevor Hearn and team Super a charity coffee morning at home. In Maureen Horne and Barbara Crabb Lawrence who ran the Paris Marathon Khanbhai took part in Tough Mudder, and they fundraiser March, PSPA was his nominated charity from our Hertfordshire Local Group in April for family member William took part in raised nearly £500. Trevor said: “The four Verna Gill raised and everyone in attendance was to our Towcester offices. Our lovely Finlayson who is living with PSP. So far, the Geneva of us that started managed to make a further £204 interested to hear about PSP and CBD. volunteers delivered a cheque for they have raised over £2,000. Marathon, it round, and first timers did it in four for PSPA by Duncan’s helpers Jean, Daphne and £1,000 kindly donated by The Wenlock Switzerland, hours. We were looking rather damp running the Lynne served up a large selection of Lodge. Thank you! and raised and cold at the end. It was an amazing Coventry Half gorgeous cakes and £201.28 was raised. They also received £1,000 from Dean, £1,757.38. £1,757 day.’’ Marathon in the Very Reverend Dr Jeffrey John. February. Verna £204 The money was raised by St Albans Tom Brown from Yorkshire ran for also ran for Zoe’s Place, a Coventry- Cathedral Mission Giving and the PSPA when he took part in the Greater based charity, and was joined by her cheque presentation was held in the Manchester Marathon in April. Tom daughter Feebi. Cathedral’s crypt. £2,000 raised £135! The Cambridge Gordon Easton ran the Greater Half Marathon Manchester Marathon in memory of presented Clare £201 Alan McGuiness and raised £816 for Robinson (pink £500 PSPA. Well done, Gordon! jacket) with the opportunity Flying fundraisers Kate Glover Mountainous to run her first wanted to do £135 ever long- achievement a challenge In April, Lancashire’s Steven Ball took distance race, for PSPA part in a Three Peaks Challenge in and she ran £2,000 Vanessa’s run which was memory of his Mum, May Ball. With £750 a great time Vanessa Procter ran her very own exciting their fundraising target of £1,000 met of 2hours 40 minutes! Clare ran in marathon after she was unable to and scary. Run Forrest, RUN! successfully, Steven and his team could memory of her grandmother Valentine Zoe Dillon ran the Manchester take part in the London Marathon She chose focus on scaling the UK’s highest peaks. Saunders, who sadly passed away from Winter Run in memory of her Dad, due to an administrative error on our skydiving and After tackling the snows and -13°c PSP in 2015. She has raised £750! Charles Dillon. Running with Jack part. As thousands ran the capital’s raised £727. £727 temperatures of Ben Nevis, Steven said: £816 iconic course, Vanessa took to the Murphy, Lasse Christensen, and Peter “The next 24 hours were a whirlwind countryside, much to the delight of her ... and a hero too! Knaggs who made up Team Run race through Scotland, England Forrest Run, Zoe and her team family and friends, those who donated Daniel Spellman completed the £450 Quite a way... (scaling Scafell Pike at 2am in pitch raised £900! to her Just Giving page, and all at PSPA. PSPA volunteer Sue Beech walked the black conditions), and finally Wales. I Leeds Half Marathon in May, and We are grateful to Vanessa for not 79-mile Dales Way in April and raised now understand the real meaning of raised over £1,000! Daniel was letting the disappointment discourage £900. Well done, Sue! the words endurance and exhaustion.” cheered on by his dad and mum, £900 her from running. She will take on the Susan, who lives with PSP. Great North Run in September. £1,000

Darren Cooper took to the skies in February to raise funds for PSPA in memory of Bernard Cooper who lived £1,000 with PSP. Darren raised a fantastic £450. £900

30 PSP Matters SUMMER 2016 31 Make a lasting difference

Making a regular donation to PSPA ensures we have a steady income and gives us the confidence to forward plan everything we do.

Your generosity enables us to commit to funding vital research into PSP and CBD and to continue providing information and support to families affected by the conditions through our helpline and local groups.

By becoming a regular giver, you are making a positive lasting difference to people living PSP and CBD and those who care for them. · £10 provides a copy of Your Personal Guide to PSP · £20 pays for one person to attend our Family and Friends Day · £50 funds laboratory equipment for a day’s research

It’s quick and easy to set up a regular donation to PSPA Visit: www.pspassociation.org.uk/donate Call: Gail Cheeseman on 01327 322419

Email: [email protected] XX% PSP Matters SUMMER 2016