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.