Issue number 65

Autumn 2015

Inside: Your fantastic fundraising Contents

Care For the families of people living with a Research diagnosis of PSP or CBD, changes in their Find out how you can loved ones’ behaviour or personality can be make a gift to research puzzling and frustrating. through our PSP Research Network. 16 Care Planning ahead for your care and treatment can empower you to make informed decisions in your 6 8 own time. Your Stories Awareness Jordan Swankie, PSPA mascot, Hope from Arbroath, 10 24 the Bear, has had a describes her roller- busy time this summer coaster ride raising awareness. since her dad became unwell. 22 Fundraising When it comes to doing your ‘bit’ to raise funds, take on whatever challenge you fancy.

Cover: Cheryl Williams and her friends and family conquered Pen y Fan. The views expressed in PSP Matters, published four times a year, are not See page 28. necessarily those of PSP Association and therefore products and services advertised or promoted should not be taken as recommendations by the 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. information to people living with Progressive Supranuclear Palsy PSP Association Registered Charity Numbers: England and Wales 1037087/ (PSP) and Corticobasal Degeneration (CBD), while funding research Scotland SC041199 into treatments and ultimately a cure for these conditions. We rely Design by Skelton Design and printed by Newnorth Print Ltd, Bedford entirely on donations to fund our work. As PSP and CBD are very similar, we often use ‘PSP’ as a shorthand for both.

2 Welcome…

What a busy summer of fundraising! The innovative ways you find to raise money never cease to amaze me. The PSP Association Sadly we can’t recognise everyone’s activities in this magazine, PSP House, 167 Watling Street West, so a big thank you to all those who raise money for PSPA, Towcester, Northants NN12 6BX Telephone: 01327 322410 however you choose to do it. Fax: 01327 322412 Email: [email protected] As you know we rely entirely on voluntary donations. This means it is only thanks to your efforts that we can provide Local Groups: Wendy Crofts, Volunteering support and information to families affected PSP and CBD Telephone: 01327 356134 today, while funding research to find a cure for the future. Email: [email protected] This includes our Research Network, which is making great Fundraising: Jean Kelly, Fundraising and Events strides in PSP research across the UK. Our feature on page 16 Telephone: 01327 356131 explains how you can get involved with this ground-breaking Email: [email protected] project. HealthUnlocked Inside we acknowledge the achievements of our growing band This online community provides a safe place where those affected by PSP and of volunteers, who give so generously of their time and energy CBD can connect with others to share to make a difference in their local areas. their experiences. https://healthunlocked.com/psp Finally, as the nights start drawing in thoughts turn to the Helpline festive season. We’ve enclosed our Christmas Catalogue, it’s The PSP Association Helpline and packed with card and gift ideas so please make a purchase if Information Service offers confidential information, practical and emotional you can, proceeds from sales make a valuable contribution to support to people affected by PSP our activities. and CBD. Mon to Fri: 9am–5pm and 7pm–9pm Thank you for your continued support. Telephone: 0300 0110 122 Email: [email protected] www.pspassociation.org.uk

www.facebook.com/ Fergus Logan, Chief Executive pspassociation

@pspassociation Working for a World Free of PSP PSP Matters AUTUMN 2015 3 News

Health minister attends Scottish Parliament event The Cabinet Secretary for Health, Wellbeing and Sport, Shona Robison MSP, addressed guests at our Scottish Parliament event to raise the profile of PSP and CBD.

he joined more than 80 people affected by PSP, their families and carers, volunteers and supporters Sat Holyrood on Wednesday, 17 June. The event was hosted by Bob Doris SNP MSP for Glasgow and deputy Convener of the Health and Sport Committee, following a social media campaign by Keith Swankie, who lives with PSP. People living with PSP and those who care for them told the 10 MSPs who attended about the impact of the disease, the issues that affect them and how services could be improved. Ms Robison praised Keith for being a ‘fantastic campaigner on behalf of people with PSP’ and explained how he Keith Swankie, front, with, from left, Bob Doris MSP; Sheelagh Swankie; Jordan Swankie; Fergus Logan PSPA CE; Shona Robison MSP had caught her attention through his persistence on social media site, Twitter. “We need a more responsive and more treatment,” he said. “Keith’s work came “As a government we joined up service for those in Keith’s to my attention during this year’s PSP position. We have to recognise that the Awareness Week and I wanted to learn absolutely share PSPA’s aim changes which matter most and make more about PSP and what can be done that everyone with PSP the biggest difference to people’s lives to help sufferers. Hopefully the event I should be able to access the are not only in the power of researchers arranged at Holyrood will help achieve and clinicians. It’s also important that a this.” care and support they need.” person living with a condition such as Keith’s daughter, Jordan and wife “As a government we absolutely share PSP is able to decide what support they Sheelagh gave moving speeches about PSPA’s aim that everyone with PSP should need and to have some control over how how family life has changed since Keith’s be able to access the care and support and when it’s delivered.” diagnosis in 2012. they need,” she said. “It is a devastating Ms Robison also spoke about the need As a direct result of the Scottish condition and we’re committed to for early and accurate diagnosis. Parliament event we had a very positive supporting people living with the illness, Bob Doris MSP told guests it was ‘a discussion with Dr Alan McNair, Senior but also their families and carers. We want privilege’ to host the event. Research Manager at the Scottish Chief to ensure that everyone who requires “I commend Keith and others for Scientist’s office, about the opportunity care has access to the highest standards their dedication in championing both to secure joint funding for a research of care in every setting. awareness of PSP, as well as research and fellowship in Scotland. More news to follow.

4 Getting together in Cardiff More than 40 professionals supporting people with PSP and CBD attended our free study morning in Cardiff in June.

Verna Gill with DJ Mikey Dee elegates included nurses, was followed by an informal Family and occupational therapists, speech Friends afternoon, where those affected PSP on the radio and language therapists, care by PSP met with others. We raised awareness of PSP across the Dhome workers and Parkinson’s nurses. All PSPA’s events are listed at airwaves in June. The study morning for professionals www.pspassociation.org.uk/events/ Our Communications Manager, Paula McGrath, was interviewed by weekly health radio series Word on Health. The special report on PSP was broadcast to 6.5 million listeners on 81 independent radio stations across the UK and the Gulf States. You can listen to the report online here at www.wordonhealth. com/on-air-articles.php Supporter Verna Gill was interviewed by DJ Mikey Dee on Coventry-based Arawak Community Radio Station. Verna described her family’s experience of PSP since her dad Bob Burke was

Delegates at our Cardiff study morning diagnosed in 2011 and talked about her activities raising funds and awareness in Free study days for health professionals her local community. EALTH professionals supporting the conditions.” families affected by PSP and The theme for the days is Improving Join us in Bristol CBD are invited to our October Quality of Life and each session will be A warm welcome awaits those living with Hstudy days in Manchester and Glasgow. aimed at the multidisciplinary team, PSP and CBD, their families, carers and The events are free and open to all highlighting best practice. friends at our next Family and Friends Day. health and social care professionals with Bookings are now being taken for our The event will be held on Saturday, an interest in the diseases. events in: 14 November at the Holiday Inn, Peter Daniels, our Director of Glasgow – Thursday, 29 October. Hambrook, Bristol. Our Family and Information and Support, said the events Chair, Dr Edward Newman, Consultant Friends Days offer the opportunity to play a vital role in helping professionals Neurologist. learn more about PSP and CBD and the to provide the best care and support work of the Association, while meeting they can for those affected by PSP. Manchester – Friday, 30 October. others affected by the diseases. He said: “We organise free study Chair, Dr Alexander Gerhard, Consultant Places cost £5 per person and booking days around the UK throughout the Neurologist. is essential. year because we recognise that, as In addition to sessions on pain Telephone 01327 322410 or email PSP and CBD are relatively rare, many management, challenging behaviour [email protected] for professionals may not be familiar with and oral hygiene, delegates will be able further information and a booking form or the complex needs of those living with to choose from interactive workshops. visit www.pspassociation.org.uk/events

PSP Matters AUTUMN 2015 5 Care

Lack of insight – a puzzling and frustrating problem

For the families of people living with a diagnosis of PSP or CBD, changes in their loved ones’ behaviour or personality can be puzzling and frustrating.

ack of insight (Anosognosia) is a She explained that we know from difficult, or refusing to face the truth. common feature of the diseases research that lack of insight occurs as a Where necessary, assessment by a and one that can be especially result of damage to this area and that neuropsychologist can help differentiate Lchallenging to understand and manage. changes in pathology affect the ability between denial (which is a coping It can result in a person taking risks to be self-aware and to have insight into mechanism we all use in many (especially in respect of their mobility), personal actions. situations) and lack of insight.” failing to appreciate dangers and lacking Cognitive changes in PSP and CBD empathy and sensitivity to others’ (including the lack of insight) can, Coping with lack of insight feelings. however, be very variable. As Dr Rose Coping with a loved one’s lack of insight Here we briefly explain why this occurs said ‘it is important to note that we are all can be very demanding. and look at how to help overcome some unique’. Cognitive changes do progress One gentleman who lives with his wife of the difficulties. with time and may affect a person’s who has PSP explained: “As a carer you mental capacity. are constantly on tenterhooks. Falls can Damage to frontal lobes happen in a split second. My wife over Dr Anita Rose, “It is not simply a denial of reaches for things that are too far away, pictured, is Consultant a problem but the genuine then she falls. If I need to leave the room Neuropsychologist at I try to think ahead and anticipate what the Raphael Medical inability to recognise that my wife may want, but I don’t always get Centre in Tonbridge. the problem exists” it right. It can be a nightmare.” She explained that the cognitive ability He said he found talking to the speech to monitor personal behaviour and Lack of insight is quite different from and language therapist most helpful. adjust accordingly is a very complex skill, psychological denial. “She understood PSP – she was very believed to be contained and mediated “It is not simply a denial of a problem reassuring that it wasn’t my fault that my in the frontal lobes of the brain. but the genuine inability to recognise wife was unable to learn new things or The frontal lobes play a vital role in that the problem exists,” explained remember ways of doing tasks,” he said. organising information and using that Dr Rose. “A person with PSP or CBD “I accept this now and know that every information to interpret experiences. who has a lack of insight is not being time we carry out a task I have to explain

6 how to do it because she Getting help doesn’t remember about Speech and language therapists, Dr Rose’s tips for carers: the need to do things occupational therapists and When communicating – be gentle, safely. physiotherapists can all assist with advice encouraging and empathetic “You never know on techniques to minimise risks and/or Stay calm – focus on the person when something provide equipment that may help. when voicing concerns and articulate will happen, Seeking help early on before lack your thoughts in a subtle and positive it’s totally of insight and other cognitive issues light unpredictable. I progress is important for the person Remember – lack of insight is not tried keeping a with PSP/CBD and their family. This may diary but there something that your loved one is include assisting them to plan for their choosing was no pattern future and to record their wishes. See Don’t argue! Logical arguments to anything. It can pages 8 and 9. typically will not work. Do not focus on be difficult for our For those in the later stages of PSP trying to convince the other person relationship. I see my wife or CBD, lack of insight and associated to change, rather focus on achieving trying to do something I feel risky behaviours may be highlighted as realistic goals is dangerous, I say something a supervision need in an assessment for but she carries on doing it. I might then NHS-funded Continuing Health Care (CHC). Stay in control – create realistic goals shout at her to stop as I’m worried she’s As a carer you are entitled to a Carer’s and structured timetables about to hurt herself but she just feels Assessment plus support around Seek help and take care of yourself I’m nagging her.” accessing services like respite care – – reach out to other family members, Dr Rose stresses that it is easier to work contact your local Social Services before friends and voluntary/statutory around difficulties rather to try to change you reach a crisis point. services. Support groups can be behaviours. Strategies may often involve Request referral to specialist helpful. Taking time away will enable changing a situation rather than trying psychological services via your consultant you to provide better care and to find to ‘change’ (retrain/teach) a loved one. or GP if you feel this is required. the caring role a more satisfying one Take regular exercise – this releases endorphins that make you feel happy Stay socially active – and recognise Using LEAP that as a care giver you might have to Dr Rose recommends using a strategy known as LEAP* at an early stage prior to be the one who organises things as lack of insight becoming an issue. LEAP stands for: others may worry about intruding on Listen to what your loved one is saying, avoid jumping to conclusions and try your time L to get a clear understanding of what they are trying to convey Talk to others in a similar situation – caring can be hard work emotionally Empathise with your loved one. This will allow them to open up to you and and physically; contacting others who not feel you are working against them E understand helps reduce isolation Agree on things you observe with your loved one about what does/does not Learn how to manage stress – work for them. This might involve making changes maybe try yoga or pilates or relaxation A techniques Partnership – create a partnership with your loved one to work towards a lifestyle that suits both parties. This means allowing them to be empowered by Get professional help – don’t P a partnership based on acceptance. Try to look at the strengths of your loved neglect your own health and raise one and build on these. issues early with your GP and other professionals. They can help arrange *Originally proposed by Dr Amador in 2000 for people with mental illness but, with slight modifications, Dr Rose has services and extra support. found it helpful for people with neurological conditions.

PSP Matters AUTUMN 2015 7 Care

It can be difficult to think about the future when you have a degenerative condition. Planning for the future

However, planning ahead for your care and treatment can empower you to make informed decisions in your own time and can be helpful for you, those close to you and your healthcare team.

You can do this in a legally binding way by making an Advance Decision to Refuse Treatment (ADRT). Rene Chang with his wife Helen

SP and CBD can be unpredictable personal choice. Whether or not you • Information about your diet, dress or and symptoms may change write an ADRT is entirely up to you. daily routine rapidly. Slowness of thought, It is important to speak to your doctor • Any fears you have around treatment Pdifficulty recalling information, about your ADRT. They can outline or care, eg if you are afraid of needles disorientation and problems with treatment options and explain how • Your preference for where you would communication and cognition can make refusing a treatment might affect you. like to live and be cared for, for example it impossible to make decisions about at home, in a hospice or hospital. your daily life. This means you may decide Expressing preferences for care it’s a good idea to write down your Aside from wishing to refuse certain Continuing to make decisions wishes whilst you are able to. treatments, you may want to express Remember, both an ADRT and an Unless you have made an ADRT, your preferences for care or detail any Advance Statement only come into also known as a Living Will or Advance values or beliefs. effect if you cannot make a decision Directive, your healthcare team will An Advance Statement, or Statement for yourself or cannot communicate. decide on your treatment and care if of Wishes, allows you to do this. This is As long as you are able to, you will you lose the ability to make decisions. not legally binding in the same way as an continue to make all your own These will always be made in your best ADRT, but in England and Wales it does decisions. interests, but what your doctors consider have legal standing because anyone Carol Amirghiasvand, PSPA Helpline to be best for you may not be the same making a decision on your behalf must and Information Services Manager, said: as what you feel is right for you. act in your ‘best interests’. In doing so, “Don’t worry if it takes longer than you An ADRT can help to ensure your wishes they must consider your wishes, feelings, expected to decide what you want – will always be respected and can initiate values and beliefs. these are important decisions and there what could be a difficult conversation An Advance Statement gives you the are lots of things to consider. You may with loved ones about the future. opportunity to express: find it useful to talk things through with However, everybody is different and • Any likes or dislikes, for example if you someone from your healthcare team or the way you want to plan ahead is a very like to sleep with the light on the PSPA helpline.” 8 CASE STUDY: ‘A few tears and a little laughter’ ADRT: The Facts Rene Chang was diagnosed with PSP in The couple also included in the An ADRT allows you to record medical 2013 and recently made an ADRT. discussions their wider family, who are treatments that you do not want to The retired Director of Transplantation all supportive of the ADRT. have in the future, such as resuscitation, at a London teaching hospital lives in Overall, Rene and Helen did not find artificial nutrition or antibiotics London with his wife Helen, who has a the process particularly difficult. It will only come into effect if you no background in nursing. “Inevitably there have been a few longer have the capacity to make or Rene says making an ADRT tears but also a little laughter involved communicate decisions for yourself empowered him with a sense of control in this process – doctors and nurses in an otherwise frustrating situation. do have a notoriously black sense of You can use an ADRT to record the “Before I retired I was responsible for humour!” Helen said. specific circumstances in which you many people, both patients and staff,” Rene was able to address specific would not want a treatment to be he explained. “PSP has left me unable issues that he felt strongly about, such given, or would want a treatment to be to look after myself without help from as resuscitation, admission to intensive stopped others and my frustration at times is care and PEG feeding. If you refuse certain life-prolonging enormous. By writing the ADRT I feel “I feel better knowing that my wishes treatments, you will still be given other at least I have some direction over my have been made clear. I think it was the treatments to keep you comfortable and future care and treatment.” right thing to do,” said Rene. pain-free Rene’s internet research took him to Helen added: “Talking about end You cannot use an ADRT to ask for the charity Compassion in Dying and of life care is incredibly difficult for anything illegal, such as assistance to he downloaded their forms. He was also many families; personally I have found end your life, or to refuse basic care and referred to a Palliative Care Consultant it helpful that Rene and I have been being offered food and drink by mouth at a local hospice. able to talk openly about his wishes. In “The Palliative Care Consultant discussing these with his children and You cannot use the ADRT to nominate was extremely kind but able to ask documenting them I feel that we are someone to make decisions on your forthright questions and challenge united in supporting his wishes and behalf. This can only be done by making Rene in a constructive fashion,” Helen we have reduced the opportunity for a Lasting Power of Attorney for Health told us. confusion in the future.” and Welfare Anyone aged over 18 who has the ability to make decisions about their future care can write an ADRT but it must meet Working with Compassion in Dying certain criteria to be legally binding Our information sheet and ADRT packs Age UK branches, can also offer one- have been developed in partnership to-one support from trained volunteers If you cannot sign your ADRT you can with Compassion in Dying, a national to help people fill in forms in their own make a mark where your signature charity working to inform and empower homes. To use the service, you need to should be or ask someone to sign on people to exercise their rights and be aged 50 plus and live in East London, your behalf. The form must be signed by choices around end-of-life care. Hillingdon, Oxfordshire, Lancashire, South a witness. The charity produces a wide range of Lakeland, South Tyneside or Trafford. information on planning ahead and end- For more information on a complex More information: of-life care. It provides support in more situation, or to find out more about ‘My For our new ADRT pack, which includes an complicated situations where individuals Life, My Decision’, contact the Compassion ADRT template developed by Compassion and families require in-depth information in Dying Information Line: in Dying and guidance notes please on the options available to them. Tel: 0800 999 2434 (Mon-Fri 10am-4pm) contact our helpline, Compassion in Dying’s ‘My Life, My Email: [email protected] [email protected] or Decision’ project, in partnership with local www.compassionindying.org.uk 0300 0110 122.

PSP Matters AUTUMN 2015 9 Your stories My roller-coaster ride Jordan Swankie, from Arbroath, has been on a roller-coaster ride since her dad became unwell.

N the last five years the 17-year- old has moved up to high school, become a young carer, walked on Ifire, visited Spencer House in London and given a speech in Holyrood. This is her story. “When I first found out that my dad had PSP, I didn’t have a clue what it meant. All I knew was that my dad was ill and there was definitely something wrong. I was doubtful about the diagnosis, as for the past three years I had been told numerous different illnesses that my dad could have and he’d had numerous treatments that didn’t work. I thought the next month we would be told something different. Jordan Swankie with her dad, Keith I was used to getting my hopes up lot wrong with him. I remember when my mum and thinking finally we knew what’s wrong. He couldn’t walk without the stability dad would set off to see the specialist of a crutch. If he was having a bad day, neurologist, thinking that maybe today Being a carer his eyes would be shut and there was no was the day we would find out what’s I never got asked to look after my dad, I way of getting them to open. wrong. But it never was. just took it upon myself to be his carer. For a while I thought maybe one day I would come home from school at he’d wake up and be okay. I guess I was lunch not knowing if he was going to kidding myself. be sitting at the table waiting on me or It was strange as a young teenager having a fit. to be dispensing medicine to my dad, It was difficult calling an ambulance when some of my friends couldn’t even aged 11, having to give details about swallow a paracetamol without making his mystery illness. I found watching a fuss. him in pain, having difficulty breathing, horrifying. Carrying on as normal People would often ask me what was Everyone would ask, “How is your dad?” wrong with my dad, and I didn’t have an “What’s wrong with your dad? How are answer. All I knew was that there was a Jordan speaking with Bob Doris MSP you coping?”

10 How PSP and CBD has affected your lives

I could never answer that last question. he certainly hasn’t lost his humour. Whatever obstacles are thrown at me, I This quality has carried through his just carry on as normal. journey, and I feel like I have adopted it My roller-coaster ride For a while I didn’t want to go out of too. the house, or with my friends because I think this experience has definitely Jordan Swankie, from Arbroath, of those questions. I didn’t want to be matured me and led me into prioritising has been on a roller-coaster ride known as ‘Jordan with the ill dad’. what is really important in life. since her dad became unwell. They would never ask me how I was In the last five years I have moved up doing, or what I had been up to at to high school, dealt with my home life’s school. The conversations always started situation, walked on fire, been to Spencer with, “How’s your dad doing?” House, and given a speech in Holyrood. It’s quite surreal really. “When I first found out that my dad had PSP, I didn’t have a clue what Presenting at Holyrood it meant. All I knew I can try and help others. This work isn’t was that my dad was ill going to necessarily help my dad and and there was definitely our situation, but it might help another family so they don’t go through what I something wrong.” Jordan at a Firewalk fundraising event did. Having an ill parent changes people’s I started off with a fire walk. This gave I guess when we did get the diagnosis perspective of you. me an opportunity to do something it didn’t really fix the issue of the I could have wallowed in self-pity and crazy and help get PSP out there. unanswerable questions. It lead to more. for a short period of time, I did. But I No one knew what PSP was, which led to decided why let this get me down when Comfort in laughter more exhausting explanations. I could tackle it at full force, which is why Throughout this crazy roller-coaster When my mum and dad told me I started raising awareness. ride I’ve found comfort in laughter. It’s that my dad had PSP I was relieved that I relish in educating people about PSP definitely better than crying. I finally had an answer. It’s a horrible and getting them to think about what My dad has always had a wicked sense answer, but at least I could begin to they can do to help. of humour, and although he might have create memories knowing what is There’s no point hiding behind it when lost his freedom, speech and movement, coming up ahead in the next few years.”

Useful organisations for young people The Children’s Society – Barnardos Child Line Young Carers’ Initiative Carers’ projects across the UK providing 24 hour helpline offering support and Local young carers groups advice and emotional support as well advice Tel: 01962 711511 as social events Tel: 0800 1111 www.youngcarer.com www.barnardos.org.uk www.childline.org.uk Carers’ Trust Need2Know Hope Support Services Information and support, discussion Offers advice to teenagers on all sorts Supports 11-25 years when a family boards and live web chats of issues such as bullying, family issues member is diagnosed with a life www.carers.org and relationships limiting illness www.need2know.co.uk Tel: 01989 566317 www.hopesupport.org.uk

PSP Matters AUTUMN 2015 11 Your stories

decreased and I have developed a more pronounced right-sided palsy. I now Coming to terms with use a standing hoist during the day and I have to use a full body hoist for the a diagnosis of PSP bed transfers. I get very tired and have a ‘power nap’ during the day. Theresa Battershill, 57, spent many years volunteering. I have to use carers in the morning and Since becoming unwell, and receiving a diagnosis of evening. The daily routine is determined by when the carers come. I get aches, PSP, she enjoys seeing her sons David and Stephen pains and numbness in limbs. progress in life and her crafty hobbies. She explains: I use thickening fluids, but swallowing isn’t my biggest problem, which unfortunately is incontinence. During here do I begin. I think my stand and walk suddenly went; a GP was 2013 – 2015 I had multiple urinary tract earliest symptoms occurred called but refused to come out. A rehab infections, but recently these have in 2010 when I felt tired, physio came, declared it a crisis. I refused declined as I take Cephalexin. We see the Wstiff, found it difficult to go up and down to go to hospital, and my husband and neurologist about every nine months. stairs and developed double vision. son were trained to help me stand to use One good thing was that I was I must have gone to the GP accepted by the local Ellenor hundreds of times to be told ‘go for hospice and I go every Monday, a walk’ or ‘lose weight’. In 2012 a GP where I can enjoy my hobbies referred me to a Parkinson’s clinic, such as art, where after a DAT scan, a working drawing, card diagnosis of Parkinson’s was reached making. I based on this scan and tremor. We can’t easily were told this takes years, possibly do all the decades, to get worse. hobbies I My husband took early was good at retirement in 2012 as we thought I such as cross was getting worse. We moved from Theresa and Jon Battershill today and, right in their twenties stitching and crochet. our house to a ground floor flat. a frame, and a commode was brought in. I realise I have a progressive illness but My husband argued with the GPs and I am keen to maintain as much as I can “One good thing was that I eventually we got an appointment with with regard to my hobbies and keep out a neurologist in May 2014. He took 30 of hospital. was accepted by the local minutes to declare ‘there’s a lot going on I have written an advance directive Ellenor hospice and I go but PSP fits it most’. Both my husband which states I don’t want to go back to every Monday, where I can and I were devastated, a nurse chased the hospital in the future. after us as we left saying ‘how awful it I love seeing my sons and watching enjoy my hobbies such as must be’. their progress in life. I enjoy my trips to art, drawing, card making.” It takes a long time to really come to Revitalise which my husband also comes terms with a PSP diagnosis. along to. I have a small group of good Between January 2013 and June 2014 All the internet searching my husband friends who visit me. I had six admissions to hospital with did made very little difference as my PSP I am lucky in that my speech is still very pneumonia. My walking got worse and I is unique to me. The advice is general, for good. I also have excellent cognition and started using a stick and an oxygen tank, the good reason that’s it’s impossible to can read books and love watching films, but I didn’t think I was disabled. be specific. dramas and musicals on my portable On Christmas Eve 2013 my ability to My ability to stand with support has DVD player. 12 How PSP and CBD has affected your lives

can still go wrong and earlier this year Muriel experienced what was probably Technology brings a transient ischemic attack (TIA) or ‘mini stroke’. peace of mind Our on-site carers were with us in no time and organised the ambulance service Patrick Johnson, from Ilkley, explains how his wife who responded with a paramedic in next Muriel, who has PSP, receives medical support from the to no time. He then sent for an ambulance which took us on an uncomfortable comfort of their home, thanks to modern technology. journey to our local A & E. And that is where the point of this article really begins. We were then introduced to an organisation called Immedicare and a technician soon visited us at home to explain how to use a dedicated computer Tablet to contact the Telehealth Hub. This is staffed by highly skilled nurses at our local hospital, with a consultant on hand if a second opinion is required. The Tablet itself is easy to use. We are encouraged to use the Tablet whenever we feel unsure or concerned about Muriel; be it about aches and pain, restlessness, vomiting, etc, etc. The Tablet immediately connects us to the Hub and we are met with a full picture of a Nurse and there is a small picture of Muriel in the bottom corner. I understand that the reverse applies and the Nurse sees Patrick and Muriel Johnson a full picture of Muriel. The Nurse can then determine the best course of action and, eing diagnosed with PSP or CBD steadily deteriorated until Muriel can do in any event, will monitor Muriel for hours does not come with any good nothing for herself and depends on carers afterwards. Readers will appreciate what news, but from time to time and family for all her needs. To digress for peace of mind this brings. Bthings happen which give comfort if only a moment we cannot praise the carers The cost to us – nothing. Seemingly if in the short term. enough – although the words might the use of the Tablet means not calling an My wife, Muriel, first realised that not be the most appropriate, time spent ambulance that saves the NHS £500, not something was not as it should be when, with them are some of Muriel’s ‘happiest’ calling the District Nurse saves £150. in 2006, she had what she described as moments, bringing smiles and laughter – a Is this something just local – no. odd feelings in the fingers of her left hand. commodity in short supply normally. Our Hub, at Airedale General Hospital Then followed the usual misdiagnosis until Since being placed on the Gold between Keighley and Skipton in West some 18 months later an MRI scan revealed Standard Framework we have received Yorkshire monitors places as far away as a lack of dopamine in the right hand side the finest service possible from doctors, Brixton Prison in London as well as local of her brain. district nurses, occupational therapists nursing homes. What was little more than an and, especially, our palliative care nurse. To find out more contact helpline@ inconvenience in the beginning has However, despite all this attention things pspassociation.org.uk or 0300 0110 122

PSP Matters AUTUMN 2015 13 Your stories

Finding strength of body, mind and soul The year 2007 heralded, we thought, a promising new start, writes Lesley Flannagan. Early retirement for Mike. Our two children were through university. It was now our time, at last! We couldn’t wait! Mike and Lesley Flannagan

arly spring, and Mike woke me and disabled shower room were fitted, prong oxygen, and an air mattress. The one morning to say that he had wheelchair access built. Daily life seemed bedroom sounded, and looked, a little like fallen backwards down the stairs. to be governed by appointments with all a hospital ward. Gradually I felt that I was EWe joked about his clumsiness in slipping. manner of health care professionals, either losing my identity. Nurse, not wife. As the year progressed we realised that at home or at the hospital. It just didn’t feel Increasing dysphasia required thickening his mobility was being compromised by an like home anymore. of drinks, and nutritious, pureed and increasing stiffness. Arthritis, we were told. An electrically-adjustable bed was easily digested foods. Mike refused a PEG, Minor personality changes were installed which necessitated separate and then the next shock; he prepared an happening. Depression caused by early sleeping arrangements, which we both Advanced Care Planning document. I felt retirement was the next diagnosis. hated. I had nowhere to warm my feet! alienated from him. I didn’t know who he Mobility worsened and following referral, Laughter still reigned. was, who I was, anymore. a diagnosis of Parkinson’s was made. Things The Botox injections were called, ‘the were getting worse. The consultant agreed. film star treatment’, which we said kept “I was a registered nurse I was a registered nurse and I ventured him looking young, despite a wheelchair and I ventured the opinion the opinion that I thought Mike had PSP. making him feel old before his time. I He agreed, but then stated that other developed muscles, and a strength I never that I thought Mike had PSP.” conditions had to be excluded as there was realised I had. Strength of body, mind A stay in the local hospice brought some no diagnostic tool for PSP. and soul! But, we were still a couple, man relief for me. I had time to sit and hold So we were sent on and wife, and in the hands with him again, and even time to our way. Mike could not summer of that year we play a practical joke! The laughter was still walk without a walking celebrated our Ruby there! A precious respite in time. stick in one hand, and Wedding Anniversary Home again, with Mike confined to bed. me holding his other with a garden party, but, Time was moving on at a fast pace. Nurses arm. My life as his carer even more importantly, in every day, managing medications. Mike had begun. with a renewal of our slept a great deal. I didn’t. I would sit with A year later I retired, wedding vows in church. him at night when he was anxious. I had Mike and Lesley renew their wedding vows earlier than planned. Never had ‘till death us three to four hours of broken sleep a night. Mike was having problems managing on do part’ seem more poignant. A caring zombie! his own when I was on duty. We went away for Christmas 2010 to our Then re-admission to the hospice. I was Gradually our lives, our house, changed. daughters. It quickly became apparent that able to sit and hold his hand again. The We jokingly called it, ‘The Bide a While Rest this would be the last time we would be struggle of living with PSP finally ended on Home’! able to go and stay. 14 January 2012. The caring had ended. Strangers came in to assess our home; The New Year brought unprepared for Then began the struggle to rediscover assistance bars, grab rails, a stair lift changes with morphine patches, nasal who I was.

14 How PSP and CBD has affected your lives

our sons were younger. We sold the business, which took a load Lacemaking has off our minds. It was our baby so selling it to someone as keen as us has been a relief. been a blessing A year ago I was diagnosed with breast cancer and had a mastectomy. Mike It’s been a rocky road for Mike and Lyn Morton, from received respite care for three weeks and I’m still having treatment. Carers visit us four Derby. Not only does Lyn, 79, care for Mike who lives times a day and our sons are very good. with PSP, she is also receiving treatment for breast We have planned our funerals, which has cancer. This is her story: been a great relief to us. It had been on both our minds, but now we know it’s all sorted. When I’ve settled Mike at night, having wo years ago Mike fell backwards Mike read an article about a local tatting my lace to turn to has been a great help. I down the stairs taking me with day that I went back to it, and it took off have enough designs for a new book and him. We were both badly injured. from there. have been invited to teach and exhibit my THe’d had a few falls and doctors We were sending parcels of thread all lace in America, a great honour. thought he’d had mini strokes. But when over the world and I was busy designing We’ve had great support and his GP saw him suddenly fall backwards and publishing books. One of them, Tatting encouragement from the local Macmillan in the surgery he referred him to a Patterns by Lyn Morton, is about to be Unit and Sparks (the local Parkinson’s clinic). neurologist. He realised things were reprinted for the seventh time. I’ve also PSPA’s literature has been wonderful and worse than he had thought. taught lacemaking in America. Mike’s Personal Guide always travels with We have always been very fit and active. him. The PSPA fact cards are amazing. I give Three years ago we were trekking in “The neurologist decided in them to friends who don’t understand, and Eastern Turkey, keeping up with the young all probability it was PSP. We new nurses. ones with no problem. That was before hadn’t heard of it and had Mike has always been my backbone. He the stairs fall. After that Mike started to get is still his cheeky self and teases me and his very tired. no idea what it was.” carers. The neurologist decided in all probability We had 20,000 balls of lace thread in Now we go day by day, as if we it was PSP. We hadn’t heard of it and had stock – all colours under the rainbow. Mike plan something and can’t do it we get no idea what it was. and I worked together, he did the jobs like disappointed. Mike decided to stop driving. He’d been bookkeeping etc, and we loved it. Each night when I put him to bed I say, driving since he was 17 and I was amazed We have mostly worked together, “Tomorrow’s another day”. how good he was about it. running a pub and a delicatessen when At this time we were running a successful business importing threads Make your voice heard for lacemaking and we travelled PSP Matters, PSPA’s magazine is now around the country to events and published four times a year. The Editor Lace Days. is always interested in your comments, My interest in lacemaking had hints and tips, and welcomes potential contributions for future issues. Material started when I was 19 and in a may be edited prior to publication. sanatorium with TB. An Italian Please send your contributions to nurse showed me a dress she [email protected] had made, it was exquisite, or write to PSP Association, and she taught me how to do FREEPOST RSLR-ZTGA-HHAU tatting, weaving on fingers with Towcester NN12 6BX a shuttle. It was 30 years later when

PSP Matters AUTUMN 2015 15 Research Making a gift to research Get involved with our PSP Research Network

n the last year, PSPA has funded researchers with various areas of expertise from seven centres across Ithe country to form the PSP Research Network, a collaborative framework with the potential to drive forward progress in early diagnosis and effective treatments. We know research is a high priority for our membership and the network is the current focus of our research investment, with a commitment of £872,000 between now and 2018. The research network involves seven core centres – London, Oxford, Cambridge, Manchester, Brighton, Newport and Newcastle – all of which have a strong history of PSP research and care.

Prof Huw Morris, Consultant Blood samples will be used in current and future research projects Neurologist at University College London and The Royal Free and tracking disease development. (biological ‘signals’ of disease found National Hospitals, the network’s chief “We believe that an important step in blood, spinal fluid, scan images or investigator, believes UK-wide teamwork in the process of developing new even skin) that can potentially indicate is key in taking research forward. treatments and improving treatment lies the effectiveness of new treatments, “Our group brings together leading in understanding disease progression ultimately aiding future drug trials.” experts from many areas of biomedical and biology, particularly in early disease,” With the help of a central coordinator research such as neuro-imaging, he explained. and database software, the network biomarkers, clinical analysis, pathology centres will be able to share data and and genetics” he said. “The rarity of PSP “With more data collected samples between each other. This means and CBD necessitates collaboration and from more people, greater researchers can work with a much we believe that the network can address larger number of patients than would some of the barriers to research and comparisons can be made otherwise be possible. providing better care for patients.” to give clearer insight as to Dr John Woodside is the Clinical how these diseases develop.” Research Coordinator for PROSPECT and Major study underway will oversee the day to day organisation The network’s first core study, known as “PROSPECT will provide samples and of the network’s activities. PROSPECT, is now underway. data which will enable us to to make “With more data collected from more Prof Morris hopes it will lead to new discoveries based on the way that people, greater comparisons can be improved methods for diagnosing PSP and CBD change over time. made to give clearer insight as to how PSP and CBD at an early stage and for “We also want to identify biomarkers these diseases develop,” he explained.

16 An ‘all-inclusive’ project CBD and related conditions. We will To reach as many people as possible, be able to see more of the biological PROSPECT will include two linked similarities between, for example, studies. Parkinson’s and PSP. Of course, this detail “We are obviously keen that our will be critical in improving diagnosis,” research is ‘all-inclusive’ for those that explained Dr Woodside. wish to participate, especially those who For comparison, the researchers also live away from our seven centres,” said need data from healthy participants for Prof Morris. this part of the study. This would involve Helping to search for a cure a single trip to a centre to donate blood, One arm of the study will involve Bob Bancroft, from Oakford in skin and spinal fluid, have a brain scan participants donating a one-off Devon was diagnosed with PSP and complete a questionnaire. blood sample at their local GP in 2013. He has signed up to surgery or hospital as well as filling in get involved with the network’s questionnaires at home. This cross- Looking ahead research. sectional ’snapshot’ will provide The research network is also an “We heard about the study in researchers with a resource for investment in the long-term future of January 2015 at an appointment investigating indicators of disease in PSP and CBD research. with Prof Huw Morris. After blood as well as genetic information, The collection of data and samples discussion stating I was interested which can be stored for future studies from patients around the country will in taking part in any research looking at genetic risk factors. enable future studies of the disease programme he thought I would The other part of the project, known as biology, progression and variation. make a good candidate and a longitudinal study, involves gathering Not only do researchers hope advised that we would be data from a group of patients over a their work will ultimately lead to the contacted in due course,” he said. period of time (see below). development of new treatments, the “Taking part in the study is really This will enable researchers to look for network itself will also generate the important to me. I want to take and monitor disease indicators as the infrastructure needed for clinical trials. part to enable ongoing research conditions change. “We are optimistic that this research for PSP, to hopefully one day find “Throughout the process, we will be will lead to new treatment trials and a cure that will help other people using the latest technology and imaging hope to work with pharmaceutical with this illness.” techniques to build a ‘picture’ of PSP, companies in the future”, said Prof Morris.

Make your contribution to major study You can take part in the cross sectional been in the last one to two years. You for clinical assessment plus a repeat of study if you have a diagnosis of PSP or will need to travel several times over any tests. Every 12 months for up to five CBD. It doesn’t matter where you live in the coming years to one of our research years you will return for an examination the UK, or when you were diagnosed. network centres (see page 18). and blood test. You will need to complete written A researcher will ask you about your Participants can withdraw at any time. questionnaires and give consent for symptoms and medical history and Healthy people are also needed for a researchers to look at medical notes. You examine you. You can also provide all, one-off visit for tests and questionnaires. will also have a blood test at your GP some or none of the following: a blood practice or local hospital using the blood sample; skin sample; sample of cerebro- To find out more contact: donation pack sent to you. spinal fluid (fluid around the spinal cord Study co-ordinator: [email protected] To take part in the longitudinal study and brain); an MRI scan (brain scan). or 020 7679 4272, or PSPA: helpline@ your diagnosis of PSP or CBD must have Six and 12 months later you will return pspassociation.org.uk or 0300 0110 122.

PSP Matters AUTUMN 2015 17 Research

Research Scotland Plans are in place to network fund a research post in Scotland in 2016

Newcastle Campus for Aging and Vitality Principal Investigator: Prof David Burn

Cambridge Manchester Addenbrooke’s Hospital Salford Royal Hospital Principal Investigator: Principal Investigator: Dr James Rowe Dr Alex Gerhard

London Newport Institute of Neurology, Royal Gwent Hospital University College London Principal Investigator: Principal Investigator: Dr Alastair Church Prof Huw Morris

Oxford John Radcliffe Hospital Principal Investigator: Dr Michele Hu

Brighton and Sussex Hurstwood Park Neurological Centre Principal Investigators: Prof P Nigel Leigh, Dr Romi Saha To get in touch with your local centre contact Dr John Woodside, study co-ordinator: [email protected] or 020 7679 4272, or PSPA helpline: [email protected] or 0300 0110 122. Can you help us raise the funds? We have committed £872,000 to the PSP Research Network You can pledge your support by donating to our between now and 2018. fundraising appeal. We are relying on our supporters to continue to help us raise Please look out for information on how you can get involved in the money we need to fund this ground-breaking research. the post, on our website and our social media pages.

18 Volunteering

A warm welcome e have welcomed three said: “The PSP Association new local group volunteers has done much to bring Ruth Keeble Steve and Betty Peers Arlene Rabin into the PSPA family over about an awareness, but Wthe summer months with our network we also realised that it would be good to us. This is why I wanted to form a blossoming as a result. to make friends with others who would group for North and Central London.” Our new Solihull group got off the understand what we are going through, A warm welcome to all our new ground on 24 June thanks to Ruth and to be able to help each other cope volunteers! If you are interested in Keeble, Day Services Sister at Marie as best as we can”. getting involved visit: Curie Hospice, taking the lead as Group Later in July, Arlene Rabin launched our www.pspassociation.org.uk/support-us/ Coordinator. Ruth was inspired to start new North and Central London Group volunteer/ a group after attending a PSPA regional with a meeting at the Mary Ward Centre Full details of all our 38 groups can be meeting in Ledbury last April. café in Queen Square, W2. Arlene and her found on our website. Betty Peers, whose husband, Steve, husband, Alan, who lived with CBD, were If you are interested in setting up a is living with PSP, hosted the first regular attendees at a former group held local group in your area please contact Woking group meeting on 6 July at the at the National Hospital in London. Nicola Shaw on 01327 322416 or email Goldsworth Park Centre in Woking. She She said: “The group was a great help [email protected]

What’s happening in a local group near you... Discussing welfare rights meeting, and an will store this information and pass it on Welfare Rights was the topic for excellent way in to people accessing our helpline. discussion at our recent Leeds Local which to meet Lesley Flannagan from our Gloucester Group meeting. others involved group has come up with a great idea for in helping those her group members - an audio library! with neurological Lesley has already been out and about illnesses. I also made trawling the charity shops looking for three contacts with CDs to share and says the idea has been associations who an immediate success. may come and speak Information or ideas you would like to at our group. A very share? Contact Nicola Shaw at productive day!” Lesley Flannagan [email protected] A speaker from Leeds City Council gave an informative presentation and held Something to share? Don’t forget Our Helpline team has put out a We are always astonished and grateful a question and answer session. Local request for information from our local for all the efforts of our group volunteers group meetings are listed in the events group network. If you know about, or and we want to share your successes. pages on our website. have had personal experience of local If you have any events or speakers A productive day organisations that arranged please let us know as soon Volunteer Lesley Flannagan from provide services in as you can so we can promote the our Gloucester Local Group teamed your area, for example: details as widely as possible. Also, please up with Specialist Care Adviser Jane volunteer car don’t forget to take photos and send Stein to attend the Neuro 15 Forum in schemes, equipment them in to us so we can share your Churchdown, Gloucester, in June. hire etc, please send achievements! Send to nicola.shaw@ Lesley said: “It was a very good us the details and we pspassociation.org.uk

PSP Matters AUTUMN 2015 19 Volunteering Putting fun into fundraising When Carla Bancroft decided to set up the Devon Local Group with step-daughter Tracey, they had no idea of the fantastic ideas that would follow.

ince they held their first meeting at Newton Abbot in October 2014, friends and neighbours have leapt Sat the chance to suggest and organise a succession of innovative fundraising events, with the emphasis on fun! Carla, whose husband Bob is living with PSP, explained: “We have had a Sloe gin and Bake Off night and some of the cricketers in the village organised a Bob Bancroft Challenge Trophy in September. We always have lots of ideas going around. We are already thinking of doing a Generation Game night next year!”

“It’s a real highlight to see everyone smiling and chatting. Even people who can’t participate as much as they would like to, you can see by their gestures they are enjoying it.” they would like to, you can see by their great support.” “Most people in our village (Oakford, gestures they are enjoying it. The group meets monthly at Devon) know Bob as ‘The Legend’ as he “It’s also good to see carers getting up The Community Hall, Mary Hall Suite, has always been there to give a helping and chatting to each other and sharing a Rydon Road, Kingsteignton, hand to everyone. Now the villagers laugh and a joke.” Newton Abbot, TQ12 3LP. are coming up to us with ideas to raise Keen to encourage anyone who is The next meeting dates are: Monday, funds for Bob and PSPA. The fact that thinking of attending a local group, 19 October and Monday, 16 November. they want to do all of this for Bob is Carla said: “We know the difficulties that For more info visit our website or overwhelming”, she added. everyone is going through but we are contact 01327 322416. Laughter and good times are also key all in the same boat and we can relate Did you know: An anonymous to the monthly meetings of the Devon to that. Remember the coordinator is benefactor generously match-funds group. probably as nervous as you! I am lucky pound for pound all money raised Carla said: “It’s a real highlight to see because I share all of this with Tracey. by our PSPA Local Groups, effectively everyone smiling and chatting. Even Without her input I couldn’t have done doubling all your hard work! people who can’t participate as much as any of this. She has been fantastic and a

20 Warwickshire group: Ready, steady, bake! T began by baking teacher, was full-time informal group, everyone gets a warm a cake for the first carer to husband Tony welcome. People are welcome to drop in meeting of our who lived with PSP until at any time. Just come and give it a try.” IWarwickshire group…and his death in February now Jenny Knight runs the 2013. It was then that she “When I heard that group! decided to give her time there was going to be a Home-made cakes to help others in a similar Warwickshire group I just have always played an situation. important role at the She said: “I believe I turned up with a cake.” Warwickshire Local Group was given this time to The Warwickshire Local Group where Jenny began help other people and meets every month at the Kenilworth volunteering back in 2014. a chance to chat is so Methodist Church, Priory Road, And since taking over important. There is no Kenilworth, Warwickshire CV8 1LQ. The as Group Coordinator in Jenny Knight substitute for talking to next meeting is Saturday, 17 October. January this year, she has made sure the other people in an informal setting over For more info visit our website or baking tradition has continued. a tea or coffee.” contact 01327 322416. She said: “When I heard that there was In April the group changed venue going to be a Warwickshire group I just to the Kenilworth Methodist Church, turned up with a cake and I have been a move that has proved as popular as providing them ever since. I even provide Jenny’s cakes. Ably assisted by volunteers goodie bags for people to take cake Mary Allsopp and Sue Beech, Jenny home with them! It’s a bit of a treat.” described the meetings: “We have a Jenny, a retired food technology wonderful venue and we are a friendly,

Brentwood group: A meeting with friends rofessional awareness sparked experience and I have volunteering I would say Liz Williams’ initial interest in made a lot of friends. I the motto really is… just setting up a local support group don’t really run the group do it. You can make a big Pfor people living with PSP and CBD. - the members run the difference with a small Her role as a Parkinson’s nurse led her group! amount of effort.” to get in touch with PSPA to offer her “I (regularly) organise If you would like to services for a group in the Brentwood a speaker but the main find out more about area. thing people gain from volunteering with the the group is support and Brentwood group, or “To anyone thinking of companionship.” any other PSPA group, volunteering I would say Liz will be retiring from email: volunteering@ the motto really is… her nursing career later this pspassociation.org.uk or year and although keen to phone: 01327 322416. just do it.” continue her links with the Liz Williams The Brentwood group Now, three years into the role, Liz views Brentwood group, she is also hoping to meets on the last Saturday of every month the monthly get-togethers not as work encourage new volunteers to step up and from 2.30pm–5.30pm at the Community but more as ‘a meeting with friends’. get involved. Lounge, The Marillac, Eagle Way, Warley, She said: “It’s a very enjoyable She said: “To anyone thinking of Brentwood, Essex CM13 3BL.

PSP Matters AUTUMN 2015 21 Fundraising

‘Do whatever you want!’ When it comes to doing your ‘bit’ to raise funds for PSPA, you can take on whatever challenge you fancy! HE Fundraising Team at PSPA ideas. People wore the lace in all sorts If jumping out of is constantly amazed at the of places (and I don’t mean that just in a planes or running ingenious and inventive ways geographical sense!) and made a host of Tsupporters fundraise to make money for other items – fancy brooches, hairpieces, through mud isn’t the Association. necklaces and even clothes! It was great Manager, Jean Kelly, always likes to hear to see the results of such creativity. quite your ‘thing’, of new and creative fundraisers. “Of course, the more daring you can why not think of “This year, we have used Ed’s Lace as a be, the more interest you can attract, and focus for activities,” she said. “This simple that’s a great way to introduce PSP and something different? concept spawned a whole range of fresh CBD to the wider public.”

How about these ideas... Eating in the Wedding bands Wedding guests donned PSPA generosity! We hope that this will streets wristbands to show their support help towards the fight to get help for the bride and groom on their with this cruel, cruel disease. special day. “My Nan Valerie had a fantastic Lucy Donachy, from Swindon, day helping us to celebrate, it was and her husband William, raised lovely to see her with a big smile awareness on their wedding day by on her face from start to finish!” asking guests to buy a wristband. £130 raised was raised. Lucy’s nan, Valerie, lives with PSP. Tweak? Wristbands can be worn Lucy said: “The day was at many events – where will you absolutely perfect! This just blew wear yours? our minds to know of people’s No-one went hungry at a fundraising street party in Cellardyke, Fife as 200 fish and chip suppers were served. Sisters, Elizabeth Birrell and Eleanor Bowman organised the event. Eleanor said: “It was a great community day and brought everyone together.” A fantastic £3,667 raised – shared with East Neuk Wheelchair Appeal. Tweak? Give your street party a theme... festive fun? moonlit BBQ? Or link it to the name of your street?

22 ‘Do whatever you want!’ When it comes to doing your ‘bit’ to raise funds for PSPA, you can take on whatever challenge you fancy! Jean went on to say that whilst big, just a little bit different – people like to be attention-grabbing acts are great for the involved with new and fun experiences. For lots of info and a guide cause, lots of smaller scale events are “We are now looking ahead to 2016 to fundraising, please critical in ensuring continued fundraising and are keen to hear any new and quirky download the pack at success. schemes to add to our plan. After all, it www.pspassociation.org. “Supporters can ‘tweak’ traditional was PSPA supporter, Scott Smith, who uk/fundraising-tools or ideas, like a sponsored walk – but over came up with the lace idea – and that call 01327 356132 for one fire, or coffee mornings in unusual was a great success. So, if you got even to be posted to you. locations. Making changes like these are the tiniest idea, we’d love to hear from The pack includes an fun for everyone, as they are something you!” A-Z of ideas (anyone for a yogathon?) and some tips on how to get the most Sweet kids publicity for your event. Sweet-toothed youngsters are going May 2016, there will be no treats for the without chocolate, biscuits and sugary three of us!” treats for a year as a loving tribute to their Sarah said it’s proving to be a tough granddad. challenge for the whole family, who live Crumbs! Gerald Marshall, 70, lived with CBD, and in Luton. Lizzie Hart and her friend was unable to enjoy his favourite wine “I am addicted to skittles, wine gums, held a cake sale at William gums, custard creams and chocolate black jacks and milk bottle sweets, so I Harvey hospital in Ashford, eggs when he started taking his food find it hard. As for Maya and Zachary - it is Kent for her uncle - £216 through a tube. beyond hard! raised and shared with So, back in May, his grandchildren, “We have found it more difficult than Cancer Research. Maya, 11 and Zachary, we initially thought, but eight, decided to give everyone’s donations Tweak? If you’re thinking up the treats their and kind words inspire of holding a cake sale, granddad liked in return us. Raising money for why not add some PSPA for sponsorship. PSPA is a positive thing cake toppers? Contact the Gerald’s daughter, for my children to keep fundraising team – events@ Sarah Robinson, in their minds.” pspassociation.org.uk explained: “My children Continuing the loved their granddad fundraising, Zachary so much and really miss held a cake sale at his talking to and joking school in Caddington, to with him. When he remember his granddad. had the feeding tube He raised an additional and had to give up his £287. The family has a favourite sweets, we JustGiving page at decided to do the same. www.justgiving.com/ Until his birthday on 9 Sarah-Robinson48/

PSP Matters AUTUMN 2015 23 Awareness She had a fantastic evening at Attitude Magazine’s Hot 100 Summer Party. She met lots of celebrities Hope’s travels including The Overtones, Simon PSPA mascot, Hope the Bear, has had a busy Dunn who was voted time this summer raising awareness... the hottest man in the world, Sanjay Hope had a surprise from The Apprentice when she visited and Nick and Nikki Normandy with the from Big Brother! Hill family. The rural peace was shattered by helicopters and cyclists in coloured jerseys when the Tour de France went speeding past. Hope loved the excitement and joined in with the cheering. It was destination California for Hope when Elizabeth Birrell and her family took her to the top of Mammoth Hope helped welcome Mountain. 40 health and social care professionals at our study morning in Cardiff, then met families and their friends in the afternoon.

Hope had a lovely day Game, Set and Match! Whilst out in Hunstanton raising awareness at Wimbledon relaxing in the sun, and she even made friends with playing in the sand and Wimbledon Bear. taking a dip in the sea.

To see where Hope has travelled go to the interactive map www.pspassociation.org.uk/hope-travels and click on the red balloons. We would love you to share where you have taken Hope.

Email photos and details to [email protected] KlemenPhoto Korenjak Buy your own Hope at www.pspassociation.org.uk/shop Hope hit the road for a motorhome 24 holiday to Lake Bled in Slovenia Fundraising

eBay bargains e are holding our first-ever PSPA ebay auction – selling Beddau Computers sponsored walk fantastic items including: W• Hope PSPA Bear signed by One Charity of the year Direction’s Niall, Liam and Louis. SPA has been chosen as Beddau • Signed photos of former British Computers’ Charity of the Year. The Formula One drivers and motorsport family-run computer repair service TV pundits David Coulthard and Allan Pbusiness in Pontypridd, is donating 10% McNish. of its service profits for a year. • Framed England Winners of 2003 And their generosity doesn’t stop there! Rugby World Cup Photo Montage In August, father and son team, Stuart signed by Bracken, Cohen, Dawson, “We’re really excited to be holding our and Kevin, organised a sponsored walk Johnson and Thompson. first PSPA eBay auction. Thank you very along the picturesque Glamorgan Heritage • Unique package donated by much too all our supporters Coastal path from Aberthaw (PowerStation) Fashion Designers Antoni & who have given us items to to Porthcawl. They were joined on the 14- Alison. auction. mile walk by Stuart’s sister Jacqueline. All bids will start at just 99p “It’s a fabulous way to raise Stuart said: “The terrain consisted of and the auction will run for one funds and awareness for flats, hills, steps, rocks and beach pebbles. week from 6 October. PSPA while offering our supporters the Luckily, we had good weather. We started Fundraising Manager, Jean Kelly, said: opportunity to own something special. at 11am and finally finished at 7.45pm. “It would be great if our supporters “Jacqueline lost her twin, and I lost my could spread the word to family and sister, Patricia to PSP. We wanted to do the friends and work colleagues,” added Jean. walk in memory of Patricia and to raise “The more items we sell the greater the funds and awareness of PSP”. amount we can raise to support those If you are interested in choosing PSPA affected by PSP and CBD.” as your Charity of the Year, please contact To access the auction and bid go to Jean Kelly on 01327 356131 or email www.charity.ebay.co.uk and search ‘pspa’. [email protected]

Bonnie Bogle backs PSPA ack in 1966 the University stunt, including and awareness for PSPA. custodians of PSPA supporter Martin Bergs, He said: “We are trying to use the Stonehenge arrived at from Surrey, owned up. occasion to raise awareness and research Bwork one morning to discover In 2008 Martin tracked money for the PSP Association. Bonnie that the stones had been down the surviving Bogle Bogle has already paid a visit to our invaded by 16 Bogles. builders and the five of them Woking Local Group and has been The story hit the national were reunited at Stonehenge, helping in our garden. headlines and the life-size along with Bogles Bruce and “Maija is also writing an ongoing wooden stick men were Bob who had escaped the fire. children’s style story about Bonnie while quickly removed and burnt. Now Martin, whose wife she still can, and we expect Bonnie will How they came to be Bonnie Bogle Maija lives with PSP, is soon meet Brother Bogle and others.” there remained a mystery for 40 years planning to use the 50th anniversary of You can follow Bonnie Bogle’s story at Photo KlemenPhoto Korenjak until perpetrators of the Manchester the stunt (February 2016) to raise funds www.facebook.com/bonnieboglepsp

PSP Matters AUTUMN 2015 25 Fundraising

Edinburgh Marathon Festival Twelve PSPA runners took part in the 2015 Edinburgh Marathon Festival in May – five completed the full marathon and the others competed in the 10k race. Together they raised a magnificent, £4,651.22.

Paul Ross and fellow runners Paul Ross and his family ran the 10k in memory of Paul’s father John Ross. Paul said: “It was a great day, bring on next year!”

Rebecca Johnson ran the 26.2 miles in memory of her grandmother. She said: “It was a great experience, much harder than I thought, but I’m so proud I managed to finish, my Grandma would be too. The last five miles were tough!” Rebecca Johnson

Liam Freeman clocked a time of 3hrs Suzanne Bradley Liam Freeman 57mins in memory of his granddad, Edwin Cole. His grandma, Val Cole, who is Group Coordinator of the Join the thousands for the 2016 Northampton Local Group, made the Edinburgh Marathon Festival trip up to Edinburgh to watch him race. next 28/29 May – races for all abilities! Ashleigh Rose was joined by her mum, • 10km race – Saturday 28 May Val and family for the 10k. The team is • 5km race – Saturday 28 May preparing to do it all again next year. • Junior races – Saturday 28 May • Full Marathon (26.2 miles) – Suzanne Bradley ran the marathon Sunday 29 May for her dad. Despite her tendency • Half Marathon (13.1 miles) – to collide with trees on her training Sunday 29 May routes, she managed to complete • Hairy Haggis Team Relay (26.2 miles between 4 people) – Sunday 29 the course without incident and met May two other PSPA runners at the start line. She said: “I was full of anxious Visit the fundraising pages of our anticipation pre-run and pure pride website or email post-run knowing I had done it!!” [email protected] Ashleigh Rose

26 Upcoming events Be a part of the jolliest race in the UK! The annual Santa Run (Sunday 6 December) through London’s Victoria Park is a very festive, and enjoyable event Introducing James – and a great way of raising funds and James Murphy has joined the PSPA team awareness for PSPA. Santa suit is included. as Voluntary and Community Fundraiser. Last year 4,000 Santas took part. You and James is an experienced fundraiser your family and as he has pedalled a 600-mile charity friends can walk, jog cycle ride through the rugged terrain of or run the 5k or 10k Iceland, completed various sponsored courses. walks and organised the fundraising for This will be our a pair of cyclists who journeyed through new fundraising the Pyrenees. team member He is fresh from the University of James’ first project Northampton and is relishing the – please help him make it a success by challenges of his new role. signing up! He has a number of guaranteed ‘’I am very excited to be part of the places available. Entry is £22 with a PSP Association team. Working for such suggested sponsorship level of £100. a worthwhile cause will certainly not For more information and to sign-up be a chore, and the fantastic work our visit the website at www.pspassociation. volunteers carry out is inspirational. org.uk, email events@pspassociation. Meeting them, as well as those who run org.uk, or call 01327 356132. our local groups, is something I am really Mel Carter and Louise Bell took part in last year’s run looking forward to.’’

British 10k Lucky raffle winners Congratulations to the lucky winners of with PSP and CBD, their carers, families, runners our PSPA Awareness Week raffle! friends and health and social care Congratulations to the 10 PSPA runners We are delighted to announce that the professionals. It costs £65,000 a year who took on the challenge of the British winners were: to provide the service and demand is 10k in London in July. Together they £500 1st prize: John, from Birmingham. constantly growing as we continue to raised an amazing £2,562.30. £250 2nd prize: Isobelle, from increase the number of people with PSP Aberdeenshire. that we are in contact with. £50 3rd prize: Jean, from Dorset. There’s still time to enter our summer Our heartfelt thanks to everyone who raffle to raise funds for Dr James Rowe’s bought and sold tickets. Together you PROSPECT-MR research study. Please raised a fantastic £15,800 to support our send your ticket stubs and money to us vital helpline and information service. by the closing date of 16 October. Our confidential telephone and email Every ticket sold will raise another £1 to help us fund this ground-breaking From left: runners Radhika Woodruff, service provides information, practical Aikta Hancock, Lisa Brady, Penny Breen and emotional support to people living research.

PSP Matters AUTUMN 2015 27 Your fundraising

Fab friends Tangoed! Striding out… Fundraising friends, Mary Barnet, Andy Alan Bell, whose mum is living with Gray and Caroline Spencer have set PSP, held a Tango Night in Dunblane. Elizabeth Birrell was joined by family themselves an epic challenge. The trio There was dancing, a cake sale and a and friends to take on the annual have already completed the Liverpool blind auction. Anstruther Rotary Club East Neuk 13- Half Marathon, The Hilly Pendle, Tough mile Coastal Walk in memory of her Mudder and now Total Warrior. Their £750 husband, Ian. next challenge? The Southport Half Marathon. £230

Head for heights Clare Westmorland clearly has a head for heights after she completed a 75ft abseil down Pembroke Castle. Her dad, Bob, is living with PSP. On yer bike £750 £3,000 PSPA supporter, David Forrester, battled windy conditions to pedal Under blue skies and a hot sun, Cheryl 80-miles on the Cairn o’ Mount Williams, alongside her friends and challenge in Scotland. It took him 5hrs family, conquered Pen y Fan in Wales 48mins – riding for his friend, Keith – inspired by Cheryl’s father Graham Swankie, who is living with PSP. Booth who lived with PSP. Along the way they were asked by fellow walkers about PSP, and Cheryl and her friends were more than happy to educate and raise awareness!

Slurp Warwickshire Group Coordinator, Jenny Knight, held a tea party for 60 people in her garden.

£1,300 £405 £200

28 Three peaks GRRRRRR Pedal power… A team of 15 completed the Three Brian the Lion and his friends turned Peaks Challenge. Amongst them a few heads when they ran the Alistair Taylor took to the saddle for were Cath Howarth and her daughter Edgworth 10k Reservoir Challenge. the London to Brighton bike ride in Charlotte, along with Stephen, Karen Steven Watson, whose mum Joyce is memory of his grandmother, Mary. and Cara Dixon, Gary and Marie living with PSP, was joined by friends His mum, Alison, is a member of the Hoddell, Gary Wilson, Justine Joyce, Neal Fell and his daughter Chloe. Nottingham Local Group. Pete Weathers, Lee Haigh, Ian and June Cook and Linda and Russ Vasey. Cath’s £40 £160 husband Dave is living with CBD. £3,000

Summer fun Janet Norbury, Manchester Local Members of our Nottingham Local Group Helper, completed the Group held a Summer Fete. Emma Manchester to Blackpool Bike Ride. and Ryan Flack were supported by ‘Team J.E.T.S’ was made up of Janet, Alison Taylor to organise the day, her daughter Emma, her son Tom which included a cake sale, raffle, (Tom is holding Hope in the photo) games, crafts and face painting. and a family friend Steve AND Hope! Zippppp Darren Ives, who is living with PSP, £900 took on the longest fastest zip wire in the world at Penrhyn quarry, Bethesda, Snowdonia. He said: “I am glad I got to do it and raise a bit for PSPA. It was a mission but I did it in the end, but I think it will be the last thing like this £2,150 I will manage.” Darren was joined by Janet Smith, Manchester Local Group two members of his mountaineering Coordinator, and Team Poppies club, Adrian Capes and Mark Grier. Splash (comprising Janet’s work colleagues) Katie Davis from ‘Dippers and Divers’ also competed in the Manchester to held a children’s ‘Swim in your pyjamas Blackpool Bike Ride. week’. The kids had a great week learning lots of life-saving skills.

£1,000 £496 £1,277

PSP Matters AUTUMN 2015 29 Your fundraising

Running for Coast to coast Boogie Mike Rutter, son Dan and brother- Compère, Paul Barton and ‘Dancing funds… in-law, Steve Haresnape, braved the Queen’ were the stars of a concert Paul Hobson was joined by his friend, elements and crossed the country on held at the Poplar Social Club, Mark, for the Chatsworth Triathlon the Wainwright Coast-to-Coast path in Accrington, Lancashire in July. Eric sprint. The pair were remembering memory of Mike’s dad. Maddison, whose wife Irene lives their friend’s mum, Sue Hilson. Unfortunately, falls on day three with PSP, organised the event with meant Steve was not able to continue. Eddie Pearson and Chris Stewart. But Mike and Dan made their way up fell and down dale finally arriving in Robin Hood’s Bay 11 days after they set off. £570 £600 £350 Congratulations to Ala Sirriyeh who ran the City2Surf event in Sydney, Australia with friends Reema, Kate and Splutter… Tiagen. The 14km course started at Sydney’s Hyde Park, finishing at the Esther Martin got muddy when she world-famous Bondi Beach. splodged through the Nuclear Rush Mud Race – raising funds in memory of her dad, Ian. She will also take on the Dirty Dozen, Nuclear Blast Race and Colour Run later this year.

£990 Spreading the word For her first ever long-distance running Pocklington Local Group Coordinator event, Olivia Crawford managed to Michael Shepherd and volunteer complete the 13.1 Ian Wadsworth set up a charity mile Great North stall at York Hospital to raise funds Run in a fantastic 2 and spread the word. They were £95 delighted to meet trainee doctors hours 19 minutes. Big thanks to former PSPA fundraising Francesco Palazzo, Emma Rushforth She was inspired team member, Stephanie Steward, and Fiyin Babatunde and told them by her Grandma, who got stuck in to the Tough Mudder. Tricia Shepherd, all about PSP. who lived with £440 PSP.

Eram Osman donned her Ed’s Lace for the Hilly Wargrave 10k. £560 £122 £570

30 Leap of faith… Growing awareness On the cards It was a glorious day when Geoff Nottingham Local Group member, All eyes were towards the sky when Stonebanks kindly opened Driftwood Alison Taylor, is selling her handmade Verna Gill leapt out of a plane at Garden in East Sussex for PSPA on cards to her group and on ebay and 10,000ft. Among those watching was 8 August. Volunteers from our Sussex also has raised funds with a barefoot Verna’s dad, Bob Burke, who lives Local Group ran a raffle and served walk, sponsored slim, garden party with PSP. home-made tea and cakes, which and bag packs. Alison’s Mum, Mary, visitors enjoyed on the front beach lived with PSP. Buy Alison’s cards at garden overlooking the sea, or in http://ebay.eu/1PTKxZz amongst the sumptuous planting at the rear.

£150

On song In Oakford, Julia £310 Mayer organised £816 a night of music performed by the Cathy White organised a skydive Hats off to Caldicote Male for her and her colleagues Kelly Voice Choir and £1,105 Addison, Judy Addison, Greg Branas, generous golfers young saxophonist Generous Iwoni Olejmiczok, and Lewis Rose- Jack Armstrong-Williams. Later, those members of Moor Matthews. They all had an amazing in attendance congregated at the local Park Golf Club experience, and hope to raise funds pub for more singing and fun! raised £8,121 at for PSP in the future. their Captain’s Day through a series of golf and tennis Correction: We apologise for the error competitions, made in the last issue of PSP Matters £8,121 charity auctions in the poem ... a warm and friendly and donations. smile by Marilyn Hicks. The final verse is The Hertfordshire club was due to republished here: boost the total further in September … a warm and friendly smile with an event to celebrate the 70th So I’m telling my ‘reflection’ Anniversary of the United Nations. Don’t look forward or back for a while Club captain, Paul Bollinghaus, Just greet me every morning chose to support PSPA after a friend With a warm and friendly Smile £870 was diagnosed.

PSP Matters AUTUMN 2015 31 Why not sign up for regular giving There are many ways you can donate to PSPA to help keep our services running. But if jumping out of a plane or running a marathon doesn’t appeal to you, don’t worry – you can easily support us from your armchair by becoming a regular giver. Regular giving ensures PSPA has a steady income and gives us the opportunity to forward plan everything we do – from funding vital research into PSP and CBD, to offering information and support to people affected by the conditions through our Helpline and Information Service, our volunteers and our Local Groups. Become a regular giver, and help to make a lasting difference to the people living with PSP and CBD and those caring for them.

Email [email protected] or call 01327 322 419

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