Issue number 72

Winter 2018 “Fundraising for PSPA is personal.”

Also inside: Page 12: Clinical trials · Page 10: Managing oral health Contents Welcome…

The start of the New Year can be a good time to reflect and make plans for the future. This year our plans include the development of an ambitious new strategy, so that we can 6 8 help even more people living with PSP & CBD. PSP clinical “Fundraising This includes our work raising awareness and trial recruiting for PSPA is educating health professionals, alongside our participants personal.” support for research into both conditions. It is vital our strategy is a collaborative effort PSPA and, most importantly, reflects the needs of PSP House, 167 Watling Street West, people living with PSP & CBD. We have been gathering feedback, but I Towcester, Northants NN12 6BX would like to invite you to email me on andrew.symons@pspassociation. Telephone: 01327 322410 org.uk with any views or suggestions on what our charity should be Fax: 01327 322412 focusing on. Email: [email protected] 12 10 Part of our work on supporting more people with PSP & CBD, includes a Research: Managing your Helpline reorganisation of our Information and Support Services, by making our The path oral health The PSPA Helpline and Information Helpline the single point of contact for people affected by PSP & CBD. Service offers confidential information, to future practical and emotional support to We are increasing our Helpline’s capacity and scope by creating two treatments people affected by PSP & CBD. new roles. Both the new and existing roles will become Helpline Care Mon to Fri: 9am–5pm and 7pm–9pm Navigators and will provide people with PSP & CBD a named contact to Telephone: 0300 0110 122 help ensure they are referred into all relevant local services. Email: [email protected] Alongside changes in Information and Support Services, we will be HealthUnlocked aiming to recruit more volunteers, so that they can provide local This online community provides a safe support. We are appealing for people to join our committed team Provide place where those affected by PSP & CBD of volunteers. The more volunteers we have, the more we can do for 20 a warm 18 can connect with others to share their Volunteering: welcome How experiences. people with PSP & CBD. https://healthunlocked.com/psp If not you, co-ordinated The New Year for me is also a time for setting personal challenges. If, like me, you are thinking of setting yourself a challenge this year, perhaps then who? care should Volunteering: you will be interested in our new fundraiser, 5K for PSPA? You will find look Wendy Crofts, Volunteering more information about this exciting virtual race inside this edition of Telephone: 01327 356134 PSP Matters. Email: [email protected] Thank you for all you do to support PSPA. It is only through your support Fundraising: that we are able to fund vital research and help families affected by both James Murphy, Fundraising and Events of these devastating conditions. Telephone: 01327 356131 Cover: Maxine Ridgeway, Craig Ball and Hannah Daykin7. The views expressed in PSP Matters, published three times a year, are not Email: [email protected] Warmest regards, necessarily those of PSPA and therefore products and services advertised PSPA or promoted should not be taken as recommendations by PSPA, who PSPA is a registered charity offering support and information cannot be held responsible should any complaint arise. to people living with Progressive Supranuclear Palsy (PSP) and PSP Matters is available as a pdf and can be downloaded from our website. www.pspassociation.org.uk Corticobasal Degeneration (CBD), while funding research into PSPA Registered Charity Numbers: England and Wales 1037087/Scotland treatments and ultimately a cure for these conditions. We rely SC041199 www.facebook.com/ Andrew Symons entirely on donations to fund our work. pspassociation Chief Executive Design by Skelton Design and printed by Newnorth Print Ltd, Bedford @pspassociation

2 PSP Matters WINTER 2018 3 News

Family and Friends Day Oxford PSP E know how much you all enjoy our Family and Friends Days and this year we will be looking at making sure they are focused on families study still getting together to participate in activities, as well as learning more Wabout both diseases. We are planning to hold our first event in May in the Berkshire recruiting area. Please check our website for regular updates. www.pspassociation.org.uk Researchers at the John Radcliffe Hospital in Oxford are still looking for more people with PSP to take part in their study known as OxQuip (Oxford study in Quantification in Parkinsonism).

HIS study aims to develop new ways of measuring PSP symptoms as precisely as Tpossible so that when new drugs are ready to test, their effectiveness Latest care information available Olympian and giant of motor can be accurately assessed. During Are you getting all the benefits for help completing forms, if required, the study, you would be asked to you are entitled to? through their partnership with the racing unite to raise funds for PSP perform some simple tasks while the After receiving a diagnosis of PSP or Department of Work and Pensions researchers measure the movements Two sporting legends took part in a unique CBD, people often find that they are not Visiting Service. of your eyes, hands and body. You aware of all the benefits they may be fundraiser for PSPA, raising over £50,000 to be would also be asked to do some entitled to. To help them through what Cognition and Behaviour invested in research into the causes of the disease. tasks on a tablet computer. Testing can be complex issues the Information For families of people living with a sessions in Oxford would take around and Support Team have put together diagnosis of PSP & CBD, changes in an hour and a half to two hours and HE fundraising lunch, held at One for PSPA as his mother died from PSP. As a new information sheet Benefits and their loved one's thought processes, take place once every three months, Whitehall Place, was hosted by well as ticket sales, just over £50,000 was Entitlements. The information sheet behaviour or personality can be puzzling over two years if possible. Travel Lord Coe, and organised by the raised from a raffle to win the use of a provides concise information on benefits and frustrating. A new information sheet Bernie Ecclestone and Lord Coe expenses will be reimbursed. TSebastian Coe Foundation. Special guest, McLaren 570S Spider worth £200,000 for such as: Attendance Allowance, Personal Cognition and Behaviour explains the If you are interested in taking part motor racing legend Bernie Ecclestone, the weekend, or a night for two at Hurley Independence Payments, Council Tax cognitive changes, sometimes seen in PSP “It was a brilliant event in this study, contact Dr Chrystalina was interviewed by Seb, and took House Hotel. Benefit and more. & CBD and looks at strategies for coping – Antoniades for more information: questions from the guests. Cameron Wood, Development Director and, along with raising The PSPA Helpline can also arrange and how to access specialist support. [email protected]. Under Seb’s precise questioning, at PSPA said: “We would like to thank Seb a huge amount for uk or 01865 234728. Bernie gave the guests an insight into Coe and his charitable foundation for research into PSP, it also Please note that unfortunately These information sheets are available on our website some of his most satisfying deals and organising the lunch. It was a brilliant this study is not open to people www.pspassociation.org.uk/information-and-support/ revealed the racing legends he believed event and, along with raising a huge raised awareness of the with CBD. If you require a printed format please contact the PSPA Helpline on were the best. amount for research into PSP, it also devastating impact of the 0300 0110 122 or email [email protected] Seb spoke to the 150 guests about his raised awareness of the devastating very personal reasons for raising money impact of the disease with the guests.” disease.”

4 PSP Matters WINTER 2018 5 News

PSP clinical trial recruiting UK participants 150 healthcare professionals An international clinical trial of a potential new treatment for PSP has started attend our study day recruiting participants in the relatively early stages of the disease. ‘Professional advice’ and ‘engaging speakers’ were just some of the comments we received following S we reported via social media and e-news in the autumn, our annual study day. the phase II trial involves a Anew intravenous drug which is being developed by Biogen, a biotechnology company specialising in developing medicines for neurological conditions Consultant Neurologist Prof Huw Morris and rare genetic disorders. The drug is an antibody that is designed to target and remove tau, the protein that forms International the tangles and clumps seen in diseased research nerve cells in PSP. The clinical trial will involve around 400 symposium on people with PSP at centres across the world and aims to establish the safety round 150 health and social palliative care and information on PSP & CBD and efficacy of the drug. It is a placebo- care professionals joined us in communication aids. We are very excited to be controlled trial, meaning that half the Milton Keynes for the event, that Carol Amirghiasvand, Helpline and working with our friends participants will be given the drug, while Awas chaired by Anna Kent, Neurological Information Services Manager said: at CurePSP in the USA, to the other half will receive placebo, which centres already have waiting lists for Participants will need to commit to Conditions Clinical Specialist. Delegates “These events are crucial in helping organise an international looks the same but contains no active screening. In order to be considered for monthly attendance at one of the trial included consultants, physiotherapists, to increase awareness of PSP & CBD. research symposium on PSP drug. Neither the participants, nor the the trial, people with PSP will need to centres, accompanied by a carer. Taking speech and language therapists, PD We are really pleased so many health & CBD, which will take place nurses and doctors at the trial centres have experienced their first symptoms part in the trial will involve receiving nurses, occupational therapists, palliative professionals attended and would like in London this autumn. will know who is taking the real drug. less than five years before enrolling intravenous infusions of the drug or care nurses, care agency staff and to thank our speakers and all those who eading neurologists and This is an essential part of ensuring the and should still be able to walk with placebo, along with a range of tests paramedics. came along.” scientists in the field of PSP & results of the trial are robust and that minimal assistance or independently. including MRI brain scans. If you have The day opened with a presentation CBD research, from Europe and any beneficial effects can be reliably Unfortunately, the trial is not open to a pacemaker or other implant that from Dr Luca Passamonti (pictured) 2018 PSPA Study Day Lthe USA will share their latest ideas attributed to the new treatment. people with CBD. prevents you from having MRI scans, you Getting the right diagnosis. It’s not Thursday 25 October – and discoveries. The individual patient participation in will not be able to take part. Parkinsons followed by sessions on Where will the trial take place? Royal College of Physicians, London Andrew Symons Chief Executive the trial lasts just over a year. It is divided There are a number of other criteria occupational therapy, cognition, research, Currently, eight UK centres for the at PSPA said: “Conferences like this into a six week screening period (when that participants need to meet. A trial have been confirmed: London provide the perfect environment all the necessary assessments will be researcher at one of the trial centres (UCL), Cambridge, Glasgow, Newport, for establishing new collaborations carried out to check that you are eligible will need to go through these with you Newcastle, Brighton, Liverpool and Reader survey and generating new directions to participate) and a 52-week dosing before they can enrol you for the trial. We produce this magazine for you so it is important for us to hear your opinions Southampton. It is possible that more for studies. We are delighted period (when either the study drug about the content of the magazine, and if you feel we should be doing anything centres could be added at a later date. to be organising the first truly or placebo is given) with clinic visits Where can I get more information? differently. Please complete our Readers Survey and help us ensure the magazine international PSP & CBD research approximately every four weeks. Once You can contact PSPA Helpline: is both relevant and informative to you. Who can take part? event in several years.” Each centre will be recruiting only a this part of the trial concludes, there will 0300 0110 122 or You can either complete the freepost paper version inside this edition or online We will keep you updated on small number of participants, with also be an opportunity to participate [email protected] at www.surveymonkey.co.uk/r/PSPMattersReaderSurvey the event via PSP Matters and a target of around 30 participants in an open-label dosing period where See also our feature on clinical trials on Please complete the survey by 28 February 2018 our website. for the whole of the UK; some trial everyone receives the study drug. page 12 and 13.

6 PSP Matters WINTER 2018 7 Fundraising

family had made about living with PSP “Once I had spent the month and wanted to get in touch. deliberating about whether to go and “When I received the request, I looked if we’d be able to raise the money in “Fundraising for PSPA is through his profile and thought he was less than 10 months, I agreed to do it drop dead gorgeous. Then I saw he because I knew what that money would was wearing a PSPA top. I accepted his mean to all the families who are going personal and emotive.” request and since then we have spoken Maxine Ridgeway, Craig Ball and Hannah Daykin through what we did. every day, fell in love and are now he hands me a brochure wrapped “I’m not a walker, nor do I have any The devastating experience of PSP & CBD brought Hannah Daykin and Craig engaged to be married. in Christmas paper. I feel it and get love for outdoorsy type activities, but I Ball together. In 2008, Hannah Daykin’s dad David, was diagnosed with PSP. “Despite being at the same university butterflies in my stomach, convinced he’s bought some ugly walking boots and At the same time, Craig Ball’s grandma May, was living with CBD. and having shared friends, it was seeing finally taking me on a cruise where I can we made sure we walked as much as my awareness campaign that brought relax, be served champagne and get a we could in preparation for the trip. We ow engaged, the couple have us together. I started my campaign the good tan. I open it and see a brochure organised almost 20 people to walk with recently returned from an epic year Dad was diagnosed after being so for PSPA and Global Adventures, who run us over the Yorkshire Three Peaks on trek across the Great Wall of frustrated that no-one knew about PSP. the adventure holidays. I thought it was April bank holiday weekend and raised NChina to raise money for PSPA. Hannah My dad had always taught me that if I a wind up and frantically looked through an amazing £3,000 just from that. I really speaks to PSP Matters about how they can’t change something then to think all the material to find the booking struggled through and almost lay down met and how a Christmas present led about how I can make it better. I got confirmation for the cruise. for the Air Ambulance to come and to her wearing something she never in touch with the charity which has “When it was nowhere to be seen, I rescue me or for the mountain goats to thought she would wear; a pair of supported me on my journey since the told Craig I didn’t understand. He didn’t eat me, whatever happened first. walking boots. beginning. say anything. At this point, he realised “For me, both the preparation and the Hannah said: “The first inkling we had “Every year I do the annual plead with he has made a grave mistake. After actual trek were challenging. The whole that something was wrong was when people to buy Christmas cards from PSPA looking through the whole brochure, culture is so different so you’re constantly Dad was at work as a heating engineer. and I hosted a band night in Sheffield, I still didn’t really understand what the faced with challenges. However, the He lost his grip of a radiator and sliced raising around £150. But, going to China present was. When he told me we were incredible views more than made up for it. his thumb open, requiring surgery. My has been my first big fundraising event trekking the Great Wall of China for five “For both of us, after living through dad didn’t make mistakes, so it was really and something I never expected to do. days, my confusion – having not owned the horrendous time that we did, with concerning. Eventually he was diagnosed “The Christmas of 2016 is one I will a pair of walking boots in my life – Craig’s grandma’s death from CBD and with PSP. To say we were devastated was never forget. Christmas morning Craig turned into tears. losing my dad to PSP, we would never an understatement. and I were still in our dressing gowns have imagined we would end up doing “None of us had ever heard of PSP, so I when we swapped gifts. I gave Craig his “Knowing first-hand what something as incredible as trekking the was determined to do whatever I could presents first - a Hugo Boss watch and a it’s like to live with PSP & Great Wall of China in memory of them. to raise awareness of the condition. smart coat he had wanted for ages. Then “Knowing first-hand what it’s like to CBD, we cannot stress how Raising awareness was my way of trying I notice Craig starts sweating and puts his live with PSP & CBD, we cannot stress to cope with the diagnosis. Dad was at hand on his forehead, riddled with panic. important fundraising and how important fundraising and raising peace with it and knew I needed to find “I reassure him that I love presents and raising awareness is to awareness is to families like ours. We my own way of coping. I know he was basically everything about Christmas, so have both lived through the horrific families like ours.” proud of what I was doing and I am so he shouldn’t panic – what could possibly times that PSP & CBD have caused and pleased he was able to see me carrying go wrong? I open my stocking and I “Fundraising for PSPA is such a personal we cannot imagine anyone else having the Olympic Torch through Sheffield. He see all the things I like, so it’s looking and emotive thing for me that I needed to go through it. That is why we continue sadly died just two months later. promising. Then, Craig tells me to go and to prepare myself and this just caught to raise both funds and awareness. If we “Both Craig and I were studying at look on the calendar for October 2017. I me completely off-guard. He told me can make a change, or help get that little Sheffield Hallam University, but we never can see it’s all blocked out from 7 to 15 he didn’t need an answer straightaway bit closer to finding a cure, that is all we met. We did have some mutual friends October and rolled my eyes asking which and that he could get a refund and buy can ask for. and around four months after my dad holiday he has booked this time – being me some Kurt Geiger heels instead if I “As for my present for the Christmas died, Craig sent me a friend request on the prolific traveller that he is. preferred. I don’t think he expected to just gone, I’m pleased to say he has learnt Facebook. He had seen the video my “He asks me to sit down, before wait over a month for the answer! to stick to the list!”

8 PSP Matters WINTER 2018 9 Care

Molly and Jim’s Story Managing your oral health Molly Boyce has PSP. She lives with her husband Jim, in South Lanarkshire in Scotland. When Molly complained “Mouth problems can be painful, traumatic and have serious implications on of mouth ulcers Jim tried numerous routes to solve the general health – and they can be very challenging to treat” says Kirsty Reynolds, problem. Jim consulted the pharmacist, the dentist and the speech and language therapist, but nothing was very special care dentist. She and her colleague Nikki Craig, are part of the special care successful. Then, explains Jim, a young doctor at his wife’s dentistry service for the Isle of Man. surgery ‘thought laterally’ and asked ‘why is this happening?’ As a retired engineer, Jim could identify with this approach to problem solving as he had been trained to ask ‘why did it pecial care dentistry services mainstream dental services. People living usually required. Kirsty and Nikki advise go wrong?’ (sometimes called Community with PSP or CBD may come into this that oral health needs to be part of a Molly tends to keep her mouth open which dries it and Dentistry) offer support to those category and should ask about special holistic care plan for people with PSP “You should never stop taking she was on a medication (Amitriptyline) which can cause a Swho, because of their disability or care dentistry provision in their area. A & CBD. Here they outline some tips for medication suddenly, always discuss dry mouth. After discussion with the doctor, Molly stopped special care needs, are unable to access referral from a healthcare professional is good oral health. with the prescribing physician and see taking Amitriptyline Jim said: “It was like magic. Within a if there are alternatives that could help week, the ulcers had improved and within two weeks they People living with PSP or CBD may experience barriers to maintaining their oral hygiene. had cleared completely.” alleviate the side effects.” Caution, however is advised. Kirsty said: “You should never • As mobility decreases it may be difficult to get to the and it builds up in their mouth, or starts to dribble out. The doctor realised that Molly had a dry mouth and he stop taking medication suddenly, always discuss with the dentist surgery or get in/out of a dentist’s chair. There are Some medications can cause a dry mouth – your doctor felt this was the likely cause of her ulcers. He spoke to a prescribing physician and see if there are alternatives that some accessible dental surgeries and, in some areas, home or pharmacist can advise on this. Having a dry mouth can neurologist who suggested looking at Molly’s medication. could help alleviate the side effects.” visits can be offered. lead to an unpleasant taste in the mouth and a coated tongue. This increases the likelihood of dental decay and • Loss of movement in the hands can make opening the dryness/cracking of the tongue and lips. Drinking enough toothpaste or using a toothbrush tricky. In later stages, help fluid and taking frequent sips of water can help. Lip Toothpaste: Use a high fluoride fluoride and creates foam. Spit any excess unpredictable clenching shut of the with brushing is ideal but a person’s wishes must be taken balms can help moisten the lips and GPs and dentists can toothpaste with at least 1450 ppm toothpaste foam out after brushing and mouth, sliding a tooth brush in under into account. It can be helpful to have a discussion early on prescribe gels or sprays to help with a dry mouth. fluoride content. Fluoride helps prevent do not rinse out the mouth with water or the lip and massaging the front teeth about this issue. decay and strengthens teeth. It slows use mouth wash, as this will remove the may be all that is possible, however it is • As PSP/CBD progresses it usually affects a person’s ability • Deterioration of speech can make it challenging to explain down the rate at which bacteria produce protective fluoride from your teeth. essential to keep trying to clean all the to swallow. This can put them at higher risk of developing a problem, or to show pain. Allow the person time to acid in the mouth. Dentists can prescribe Consider getting an electric teeth, brushing at different times of day aspiration pneumonia. Aspiration pneumonia is a bronchial explain or try using a picture board. Taking cues from non- a higher strength fluoride toothpaste toothbrush as it may be easier to use. may help. pneumonia caused by the spread of bacteria in fine droplets verbal responses is very important, for example, changes in which can be useful for increased There are special three sided brushes from the throat and mouth into the lungs during breathing behaviours around food and sleep patterns, could be due protection of the teeth where someone available which can help to clean the Denture care: Don’t sleep with dentures, and coughing. Dental plaque is a reservoir for bacteria and, to dental problems. may have increased risk of tooth decay teeth more effectively, especially when because gum tissue needs time to rest if not removed by brushing, can potentially dislodge and (such as a dry mouth). carers are cleaning for an individual. and leaving the dentures in can cause • Saliva plays an important role in keeping the mouth be inhaled leading to aspiration pneumonia. Maintaining Low foaming toothpastes can be some fungal infections. Dentures should healthy. It helps break down food particles, helps ‘wash’ good oral hygiene and avoiding the build-up of plaque is helpful if swallowing the foam created Assisted brushing: Carers may find be brushed with soap and water and left the mouth and protects it from drying out. People with important for people, including those who use ‘PEG’ feeding by toothpaste is a problem. These can be it helpful to use the ‘2 toothbrush in a small amount of water overnight. PSP & CBD may find that they are unable to swallow saliva and will reduce the incidence of aspiration pneumonias. bought over the counter or prescribed technique’ to help hold the mouth open by your dentist. Pick one that does not and might need to use finger protectors contain Sodium Lauryl Sulphate – this is if appropriate. Ask the dentist to show For further information or for help the foaming agent. how to help brush, as it can be difficult in finding a service in your area and they may have specific tips. please contact our Helpline on Spit but do not rinse: When brushing In the later stages of PSP & CBD, when 0300 0110 122. do not wet the toothbrush – it dilutes the teeth cleaning may be trickier due to

10 PSP Matters WINTER 2018 11 Behind the scenes of a clinical trial Research DISCOVERY PRECLINICAL RESEARCH Researchers discover AND DEVELOPMENT new drugs through … Researchers conduct experiments to gather information …

How do clinical trials work? BASIC RESEARCH ■ Test drug on living Researchers conduct experiments organism The only reliable way to prove beyond to gather information… The path to future treatments reasonable doubt that a drug is ■ Potential benefits beneficial is by monitoring the effects

■ R eports of problems It’s an exciting time in the development of PSP treatments, with an international clinical of the drug in a group of patients and ■ Existing drugs ■ What the ■ Technology drug is comparing their progress with a similar ■ trial already underway (see page 6) and others currently in development. The path to New insights doing ■ Tests in cells licensing a new treatment involves several significant hurdles, with the biggest (and group not taking the drug. This means that half of the participants in the trial

most expensive) one coming at the end – the clinical trials process. won’t actually get to take the new treatment. Instead, they’ll be given a CLINICAL placebo, something that looks exactly Clinical trials are conducted in four dierent phases with each phase the same but has no biological effect. serving a specific purpose to researchers. PHASE 1 PHASE 2 PHASE 3 PHASE 4 “The new generation of

Assess the safety This phase help s confirm the Researchers gather clinical trials offers real of a new drug. eectiveness of the drug, additional safety information gauge side eects and gather on an even larger group information so th e drug of people. hope for patients and or treatment can be ■ G ather data on long-term used safely. eectiveness and aect families affected by PSP on quality of life. ■ Hundreds or even thousands ■ E valuated for cost and ■ Test drug on small g roup (300–3,000) of people against other similar drugs. & CBD.” of people (20 to 80) may receive a new drug

or treatment and be ■ R eceives regulatory approval ■ E valuate how the body ■ T he drug or treatment followed for several years. and is widely marketed. The use of a placebo might seem handles the drug is given to a larger group unfair, but it’s absolutely essential to (100 to 300) ensure that any beneficial effects seen

■ ■ are entirely down to the trial drug. It Safe dosage ranges Determine eectiveness ■ Record side eects ■ Continue to evaluate safety can also help to highlight any increased occurrence of unwanted or even dangerous side effects in the group reasonably early stage of the disease as taking the active treatment. this gives the treatment the best possible Issues to consider if you’re To prevent bias, participants are chance of working. thinking of joining a trial: assigned at random by a computer to Trials also take up a lot of time and • Are you and your carer prepared vidence from a successful clinical to help researchers build up a fuller stronger scientific foundations, and use the treatment or placebo groups and resources at the centres involved and for the time and energy the trial trial is used to get a new drug picture of PSP & CBD. of smarter ways to detect the benefit for the duration of the trial neither the each centre will generally only recruit appointments will demand? licensed and approved for use. Consultant neurologist Prof James of a drug or vaccine. The new trials are researchers nor the participants know a small number of participants, ideally • Can you commit to travelling to EHowever, before it gets anywhere near Rowe at Cambridge University Hospital tackling PSP from very different angles, who is taking the real drug. from their local area. Taking part in a every appointment? a human, a new drug must have shown said: “The new generation of clinical trials finding the weak spot in the disease that trial often involves frequent visits to the • How do you feel about the significant promise in the lab and in offers real hope for patients and families can be exploited for treatment. Count me in! centre over several months, so it makes possibility of being on the placebo animal studies. Researchers need to affected by PSP & CBD. It is not just their “In many drug companies, the smart Many people jump at the chance to take sense to recruit people who have the rather than the trial drug? have confidence that it might be safe money is on PSP, in a way never seen part in a clinical trial, maybe in the hope best chance of being able to make it to • Are you prepared for the risk of and effective for people to take. Even before, with a domino effect on CBD that they will get access to an effective every appointment and complete the unpleasant or serious side effects then, investing in a clinical trial is a research. It is a great time for patients treatment, but often because they simply study without too much difficulty. from the trial drug? gamble for a pharmaceutical company. and doctors to work together to find a It’s disappointing to find that you want to make a positive contribution Our new information sheet Clinical Trials are nothing more than large scale cure – not everyone can take part in trials, can’t participate, but it’s important to to research. However, many willing trials provides further information. experiments and many drugs that have and they can be a major commitment. remember that trials are experiments, volunteers find that participation is not If you would like to know more shown promise during the early phases But, taking part in research can also be not treatments, and the fact that they open to them. about other ways in which you can of testing have proven to be ineffective very empowering, working closely with are happening at all is still a positive step. Strict criteria for inclusion in the trial participate in research, contact our once they reach clinical studies. But even your medical team and taking back You can make an important contribution are essential for safety reasons and to Helpline on 0300 0110 122 or if that happens, the results from the trial control against the PSP, for you and for to research by taking part in other ensure that the results are reliable. Most [email protected] will have provided valuable knowledge Prof James Rowe future generations of patients.” trials require participants who are at a studies or considering brain donation.

12 PSP Matters WINTER 2018 13 Your stories

“We would talk about the difficulty of and then suddenly it all stops. You lose getting her dressed. I took all her trousers everything. All the carers visits, the to a tailor and had them fitted with district nurses – suddenly you are in a elastic waists. With her blouses, the tailor different world. fitted the seam from her armpit and to “As much as it was a struggle, good still her wrist with poppers. This made it so came out of the experience. Muriel and I much easier to get her dressed. were introduced to so many people who “I didn’t know who to ask for help. were determined to make life as near Someone suggested social services. normal as possible. Many went out of A social worker visited and took us their way to take care of my wife and to through everything. We had assumed offer support and comfort to both of us. we wouldn’t get any support from the state and were surprised that they “When you have good, don’t take the value of your home into proactive professionals consideration. They started to fund carer involved, it makes a huge visits, which helped a lot. Patrick and Muriel on holiday in South Africa “When you have good, proactive difference. Believe it or not, professionals involved, it makes a when Muriel got worse, was huge difference. Believe it or not, be told what benefits are available, and actually when things began “As matters went from bad to worse, when Muriel got worse, was actually what equipment will help. For example, when things began to get better. it wasn’t until I read in PSP Matters that if to get better. our relationship became closer.” We started to get professional help; you have a wheelchair in the house, you “I would not want to go through the Patrick Johnson’s wife Muriel, was diagnosed with CBD in 2007. Patrick became carers, speech and language therapists, get a discount on your council tax. experience again, but I like to think it occupational therapists, social workers, “My wife remained at home with made me a better person and more Muriel’s main carer and cared for her at home until the very end. Here, Patrick talks physiotherapists, domiciliary dental and me until the very end. Muriel’s last day attentive to the needs of others. I owe about caring for Muriel and how the experience brought them even closer together. sight care. Each of these brought two started like any other. Carers came in a debt of gratitude to everyone who things – assistance with everyday living the morning and got her showered and helped. I shall always remember their “ HE decade before my wife Muriel, “When we got home I went online. It “Becoming Muriel’s carer happened and brightness in an otherwise dark time. dressed. By this point she had lost her acts of kindness and generosity. was diagnosed with CBD, was one wasn’t easy reading. I kept from Muriel very gradually at first, with trips to the “Perhaps our most important guest, speech, but her brain was still active. The “If you are now at the beginning of a of the happiest times of our lives. and her family the part about the hairdressers and doing some cooking. other than our team of carers, was the previous evening, we were watching a journey similar to mine, I offer you my TI had retired from the Police at 48 and condition being incurable and the life It gradually progressed from there. One palliative care nurse. With her help, comedian she liked on TV and she was sympathy and hope that, as I did, you was working part-time, which involved expectancy. During the next few years, time we were on holiday in our caravan, every aspect of my wife’s future could chuckling away. will get through the experience with the frequent trips aboard, often with Muriel because of the slow progression, CBD when I could hear her crying out in pain. be discussed and I know that having her “As she was sleeping after lunch I could help of others and find yourself a better by my side. didn’t interfere too much in our lives and She couldn’t get her nightdress on. That wishes recorded, brought my wife great hear she was breathing oddly. I called person at the end. No one deserves “I first met Muriel at work in the early we continued as we had always done. was a milestone moment for both of us. peace of mind. I was also grateful I didn’t the nurse who confirmed she was in the either PSP or CBD and PSPA warrants all 60s. We were married to different people However, we did put some plans in place My caring responsibilities had progressed have to do it; that would have been too last stages. I phoned Muriel’s daughter the help and assistance it can be given.” then, but ten years later, we were both for the future, such as moving into a from picking up and dropping off, to hard for both of us. and the carers, who all rushed to be at single and got married in 1981. During retirement village. showering and dressing. From there, “As matters went from bad to worse, her side. Muriel looked at each of us in Many people tell us that reading our marriage, Muriel took great care of “Eventually, the time came when the over time, we got to a stage where I was our relationship became closer. As she turn. I really do believe, at that moment other people’s experience of me and we were happy together. neurologist appointments and scans doing everything for her. became more and more dependent on she knew what was happening and was PSP & CBD is one of their favourite “In 2006, she noticed there was were becoming more frequent. Muriel “That was so hard for Muriel. But, she the carers and me, the more we both saying goodbye. There was no pain or parts of PSP Matters. something strange happening to her became aware that CBD wasn’t going made it as easy as possible for me and in gained great comfort from each other. anguish or any discomfort at all – she fingers. From there she received a series away and that it would get worse. her own gentle way, enabled me to get “When you are dealing with a passed away peacefully and at home, If you would like to share your of misdiagnoses. One year later, we went CBD is funny that way. Nothing can on with things. It makes it so much easier condition like CBD you need to have a where she wanted to be. story, please contact to see a neurologist who told us it was happen for years and then you feel like if you are both singing off the same team of people around you who really “I miss her dearly. It is hard to be so [email protected] or likely to be CBD. Of course, we had never you are falling off a cliff with a rapid hymn sheet. We shared our problems care about what they are doing and needed by someone and be in such phone 01327 322410 heard of the condition. deterioration. and came up with shared solutions. don’t just view it as a job. You need to an intensive relationship as we were

14 PSP Matters WINTER 2018 15 Your stories

reya’s grandmother, Margaret, really unsafe practices occurred in the had PSP and lived with Freya and hospitals. On more than one occasion I’d her mum Melanie. Melanie and be photocopying PSPA information for “I knew more FFreya speak to PSP Matters about their ward doctors. experience of PSP and why the play was “Raising awareness of PSP is important a great opportunity to raise awareness of to the family and when an opportunity about PEG the condition. presented itself to Freya, she knew Melanie said: “It was at my daughter’s what she wanted to write about. Freya baptism when my mum, Margaret, had said: “I had created a piece for Harts her first fall. She fell backwards and I Theatre as part of a competition. The Portrait of Gran by Freya feeding and remember thinking how odd, as she Theatre Director, Ann Akin had created was standing still at the time. That was fact, I think Mum is the hero in all this. a fantastic event at the Lyric Theatre in the start of many more falls, so we saw We seemed to spend every Christmas Hammersmith where it was performed. a specialist who advised me to “be a Day in hospital and Mum would still Following this, Ann was instrumental in hoists than good daughter and buy better slippers.” make them magical.” Melanie continues: me being invited to create a new piece The investigations into what was wrong “Watching Mum’s progression with PSP for Jude Law to perform at the Lyric Gala. continued and eventually she was has been heart-breaking. I missed her “I was really lucky to be mentored maths!” misdiagnosed with Parkinson’s. Eventually voice dreadfully. You start to feel them by the playwright Simon Stevens and she received a diagnosis of PSP. slipping away, but each week brings new he encouraged me to write about “I wanted to look after Mum at home. challenges and you become consumed PSP. His advice helped me to have the At first, we had carers for a couple of with the practicalities, until, one day, you confidence to tackle it. I suppose it hours a day. Then, with the help of PSPA, realise you haven’t had a conversation, or has been my entire world really, I know I fought for a continuing care package. the smile has faded, or your Mum’s face more about PEG feeding and hoists Together, we influenced decisions in the is set in an almost permanent expression than maths! area and I hope we paved the way for of worry. Once her voice went, I relied “Jude had agreed to do this a much easier process for people with on her face and a few hand signs. When performance for the Lyric Gala and I PSP in the future. I certainly would not that faded too, I worried constantly that knew, before I started writing Mushy have coped without PSPA. My daughter she was in pain, but thankfully she had a Peas and Battered Bits, that he would and I cared for Mum at home until strong grip and could squeeze for a yes be performing it. He was so lovely, her final year, when she moved into a and so we worked out a code. very friendly and encouraging. He just wonderful care home, where the staff really puts you at ease and is one of the really developed an understanding of “I was really lucky to be team. I thought I would be intimidated, the condition. but he creates a warm and welcoming mentored by the playwright Freya said: “I can’t remember Nana atmosphere. not being in a wheelchair, although I Simon Stevens and he “I don’t think he had heard of PSP, but do have photos of us walking together. encouraged me to write he was really interested and wanted to Nana loved her teddies and we would lie know very specific things. He asked me a about PSP. His advice helped on her bed and cuddle them for hours. lot of detailed questions as he wanted his I loved reading to her, and she had me to have the confidence to portrayal to be as authentic as possible. I to sit through the whole Harry Potter tackle it.” think he did an amazing performance. series. I struggle now remembering her “PSP is such a hideous, difficult disease. When Freya Hannan-Mills, 13, was invited to create a play for the Lyric Theatre’s speaking, but she would gurgle when “PSP is little understood, even by It’s terrible for the person, but equally Gala she decided to use her personal experience of PSP. Performed by actor, Jude her carers brought their dogs to work. medical professionals. I think that’s why I awful for the carers and family because It was terrifying the first time I saw her feel so strongly now about spreading the it is so relentless. I have lived with this Law, Freya’s play Mushy Peas and Battered Bits was about a man with PSP, who choking. Mum had been trained to word. There’s so much ignorance about disease for most of my childhood and takes a final day trip with his carer to the beach where he spent his childhood. use a suction machine and I thought it the condition, especially in the NHS. I I’m determined to continue to raise was really brave of her to be using it. In can’t even begin to list the times that awareness of its devastating nature.”

16 PSP Matters WINTER 2018 17 Your stories How co-ordinated care should look A positive move Is living in a small community sometimes the key to good care? Living in an area “I just want to live as good a life as I can.” where the professionals all know each other and many of them work in the same Pat, 71, was living alone in a 3 bedroom house when, building? Where referrals between professionals can be made face to face? in 2015, she was diagnosed with PSP. Concerned about the future Pat took pro-active steps to look into what ndy and Elizabeth Copp live Andy raises awareness in the local media housing might suit her. Having lived in her previous in a small town called Keith, on accessing the Marie Curie nursing service the Moray Firth in the North (which many people mistakenly believe home for 40 years, this was quite an undertaking. AEast of Scotland. In March 2016, retired is only available to those with cancer). high school maths teacher Andy, 66 was The plan is that occasionally an overnight AT was attending the hospice and diagnosed with CBD. Since then, he and Marie Curie nurse/carer will be provided, staff there helped her obtain a flat his wife have appreciated the well co- so Elizabeth can get a good night’s with care staff available 24/7 and ordinated and well planned sleep. Marie Curie are also arranging for a Pa good range of community facilities, care and support they have received volunteer to visit Andy regularly. including a gym. Pat only had two weeks from both their local council and local to decide on the move and was grateful health services. “Ailsa has arranged a for this, as she feels it stopped weeks of Andy was diagnosed by a local walk-in shower and other agonising over a decision. consultant who offered to arrange for Initially Pat found life in her new home him to see a neurologist in Aberdeen. bathroom equipment, a strange and would stay inside her flat. The couple decided against this, feeling profiling bed, a ramp at the Slowly she started to join in activities. Pat that key to managing was getting good front steps and a stand aid.” said: “I missed my garden, so I became a local support. garden volunteer. I’m in charge of dead One of their key professionals has been Elizabeth feels the social worker and heading all the flowers after they’ve their Occupational Therapist (OT), Ailsa. the manager of the care service have finished blooming. I joined in more and Elizabeth said: “Ailsa is five star, I can’t both been quick to understand their more. I did crafts, I went on outings, speak highly enough of her. She is so needs and to sort out concerns before made friends and then, when someone pro-active. We have never had a crisis, they escalate. Andy now has two carers told me exercise would be good, I joined we have always had the right equipment four times a day and the social worker is the gym. in place before we need it. ”Ailsa has arranging a sitter via Crossroads Care. “I checked with my consultant and pedals), upping the resistance level arranged a walk-in shower and other communication issues and has lent Attendance Allowance claim. She also For many people having a care he told me ‘any exercise is good for you.’ as time progressed. Pat’s balance has bathroom equipment, a profiling bed, a Andy an ipad with a speech app on it. liaised with Ailsa over equipment issues. co-ordinator is key and this is a role At that time, I was unable to walk in a improved and how she has grown in ramp at the front steps and a stand aid. She is also looking at how Andy can Elizabeth’s needs as a carer are we know is important. For Andy straight line. I looked drunk. I was also confidence. Elizabeth continues: “It’s so important continue to manage his emails despite being addressed. Following a carer’s and Elizabeth this hasn’t really been unable to stand up from a chair without Pat continues: “I was attending the to have a home that can cope.” Ailsa his struggles with a keyboard due to assessment, she was put in touch with necessary, as their needs are met support.” gym twice a week, but I’ve just increased has also been instrumental in bringing reduced movement in his hands. This Quarriers Carer Support Service which through excellent individual relationships The onsite gym instructor, Pat this to three times a week. When it’s wet other professionals together. The is very important to Andy as he has an offers support to unpaid carers across and through professionals involving their Honeyghan, is familiar with progressive outside I worry about going out so using physiotherapist now ‘pops in’ regularly to enduring passion for steam trains and Moray. Through them Elizabeth has colleagues in a timely manner. movement disorders. She works in the gym replaces a walk. It is hard in the monitor Andy’s mobility and upper body runs a business (Lochgorm Kits) making obtained a carers emergency card, Elizabeth has shared this good practice sports development for the local gym, but the benefits to me have been strength and the community nurses calls brass model trains. completed an emergency plan in case with a local care commissioner who told council, and with the falls prevention unbelievable. I walk better (still using a fortnightly and keep Andy’s GP in touch The local Parkinson’s Nurse Specialist she is suddenly unavailable through her ‘I now have a vision of everyone in service. She talked with Pat and devised stick) and my fitness has improved. with how he is. visits which, the couple explain, is always illness or a crisis and attended a range a line holding hands, all supporting you a programme for her, concentrating “I just want to live as good a life as I can The Speech and Language useful and the local Parkinson’s Adviser of courses. and Andy.’ “Yes” says Elizabeth “It feels just on using an ergonomic bicycle (with and appreciate my body as it is now. I Therapist has worked with Andy on has been involved and helped with an It was Andy’s GP who suggested like that.” Pat sitting in a normal chair and using know it can change in the future.”

18 PSP Matters WINTER 2018 19 Volunteering

You, me and PSP – You just need one number for Cilla’s memory lives on support – our Helpline If not you, then who? E are reorganising our Information and We now have an amazing team of 100 volunteers a month, want to make a difference and can be supportive. Is Support Services, to help us focus our efforts supporting us in delivering a wide range of services for this you? on supporting even more people with PSP people with PSP & CBD. We have some exciting plans for If it is, we would love to hear from you. Please talk to family, friends and colleagues about volunteering and pass on our W& CBD. Part of this work includes making our Helpline this year, but to put them in place we need more volunteers. details to anyone who may fit the bill. They may not have the single point of contact for people affected by both UR aim is to double the number of people thought about volunteering before and it might be just what conditions. volunteering for PSPA, so we can provide people with they are looking for. Through our 2016 survey for people with PSP & CBD, PSP & CBD more support and raise awareness. book about Cilla Dagnell’s life with PSP has been we have seen the impact our Helpline has on people OChloe Cripps is a speech and language therapist and Helpline who have used the service. By being centrally located, read by people across the world and has, so far, has been a volunteer for PSPA for three years, as a helpline I am here raised over £3,000 for PSPA. Through the book, assistant our Helpline is able to provide consistent and equitable volunteer and, a support worker. Chloe talks about her to listen AYou, Me and PSP Cilla’s legacy lives on by continuing to help support for all our members in the most cost effective motivation for volunteering and why, for small charities others affected by the disease. With her determination and way possible. As part of the restructure, we will also be supporting people with rare conditions, volunteers are vital. encouragement, Cilla’s husband Steve wrote the book in her simplifying our processes so people affected by PSP & Chloe said: “I started volunteering on the helpline. I found Local group memory following her sad death in late 2015. CBD will have just one point of contact in the future. it easy to manage alongside my job and two small children. volunteer Steve said: “When I spoke to Cilla about her illness, she said, We are increasing the Helpline’s capacity by creating two At first I was worried, how can I help people who call? I soon ‘let people know by doing what you do best… go for it’… new roles. Both the new and existing roles will become realised the most important thing was listening. For the So I did. With a heavy heart, the day after she died I started to Helpline Care Navigators and will provide people with PSP majority of people, it is such a complex condition to get their write, and since Cilla was a great diarist, many of the words in & CBD a named contact to help ensure they are referred head around, so talking it over helps. The most rewarding thing the book are very much her own. into all relevant local services. Inevitably, centralising is when people finish the call in a better place than when they “The response to You, Me and PSP has been phenomenal. I this service means reducing our regionally based staff first contacted the helpline. recently saw that a well-respected PSP group had included it numbers, including the Specialist Care Adviser role. “PSPA asked if I would be willing to take on a support Andrew Symons, Chief Executive said: “We are working on a list of books that may help people with PSP, and many Provide worker role. I was soon given the name of the first person to had commented that they found our experiences helpful. We need a warm hard to minimise the impact of the restructure by visit. Visiting someone as a support worker is very different to welcome The first part is about Cilla's early life. From there, we share more removing vacant roles and redeploying staff where visiting people in my professional role. There is no tick box, no the impact of the diagnosis of PSP and how we managed volunteers possible to the new Care Navigator posts in the Helpline. time limit, no list to work through. Instead my visit is totally the progression, from dealing with sight loss, advanced care “In a restructure like this there are always difficult led by the person I am supporting and their priorities. Most planning and eventually brain donation. In fact, we cover decisions to make and these will be handled sensitively importantly of all, I am there to listen. everything someone living with PSP needs to consider. and respectfully – but we need to have a sustainable “There is so much need out there for this role. We need more “Cilla didn’t want to finish on a negative, so at the end we cost base going forward, and to demonstrate to our support workers, so that people with CBD and PSP throughout shared positive examples of things she continued to enjoy, supporters that we are making the best use of their the country, get access to this type of support. even in the later stages of PSP. Keeping Cilla’s name alive is donations. Our focus must always be on how we can use “I would encourage anyone to volunteer. For me it is about Raising awareness extremely important to me, but the most important aim of our resources most effectively for the people we are here meeting different people and broadening your horizons. For of PSP & CBD the book, is to provide people living with PSP, CBD and other to support.” PSPA, without people volunteering it simply would not survive, neurological illnesses, useful hints and tips, as well as raising Alongside changes in Information and Support Services, which would be so money for PSPA. we will be aiming to recruit more volunteer support damaging for the Cilla insisted that all profits go to PSPA, so I signed financial worker roles, so that they can provide local support to people we are here I will people with PSP & CBD. rights over to them for 25 years from publication. Conversely, support to support.” you on I have met so many people connected to PSP, which is now your Would you like to find out more about becoming a We are looking journey my motivation for spreading the word about, You, Me and volunteer support worker? Please contact Volunteering on for people who are PSP, so that it can reach as many people as possible.” 01327 356134. good listeners and The book is available through Amazon on Kindle and in Concerned about how these changes may affect you? communicators, can book form as well as through the PSPA website. Support Please contact our Helpline on 0300 0110 122. donate a few hours Chloe Cripps and her family Education volunteer worker 20 PSP Matters WINTER 2018 21 YourVolunteering fundraising

News from our Local Groups Workshops and development Reflections on the year Hello and Goodbye days for our volunteers Ann Pearse, our Worthing group co- ordinator shares her reflections on the Leeds Liverpool past year. “We have enjoyed catching up AM Bower our stalwart Leeds E are looking for a new local and exchanging helpful hints and tips. It group co-ordinator and her Wgroup co-ordinator for our is nice to be able to talk to people who Pcommitted helpers Beryl and Sid Liverpool group. After being at the understand exactly what you are going Mayhew, have after five years at helm, Julia Bonner and husband Jim through, either as a person with PSP or the helm, decided it is time to take are leaving the Liverpool area for CBD, or their carer or family member. pastures new. A huge thank you to Cheerful chats more of a back seat. Pam will still Often another member has had a similar be attending the group, which will them for everything they have done The Hertfordshire group have used experience and can offer help and advice continue to meet at the same venue to keep the group going. However, it the last two meetings to focus on the to make things easier. this year. Cathy Howarth will now be may not be goodbye, talks are already social aspect of their meetings. Group “We have had talks from Carers the main point of contact and can happening about a new group with co-ordinator Maureen Horne, explained Support West Sussex, a local Carers be reached at catherinehowarth. Kent co-ordinator Sarah Marshall in In September, 14 of our group co-ordinators from that members really like the opportunity Health Clinician, a speech therapist, our [email protected] The meetings will the East Grinstead area, when they to come along and socialise, and in her Aberdeen to Devon attended our local group workshop. local Parkinson’s nurse, as well as Jules continue to be held on the second are settled into their new home. We words: “enjoy a chat over a cuppa and from PSPA. Wednesday of each month and old wish them all the best. HE day started with a lively cake with friends who understand.” Of “We have also tried to spread the and new members will receive a discussion where colleagues particular interest have been two people word raising awareness by manning an warm welcome. New group on the shared their experiences of taking part in the Oxquip research study information table at our local hospital Isle of Wight Trunning a local group. that is taking place at Oxford. Members during PSPA awareness week and two isters Becky Gell and Vikki Sarah Marshal, led the group in a learned about what it is like to take local carer’s shows. Colenutt, will be setting up our discussion about activities during group part and the processes and procedures “We also raised funds for PSPA from Sfirst group on the Isle of Wight early meetings. Many ideas were put forward involved. To keep everyone up to date, a 5k sponsored walk, a coffee morning this year. As soon as we have dates from craft activities to visits from Pets as including those who have been unable to and stall at a fair. In addition, we were and a venue confirmed, we will be in Therapy. attend, Maureen sends out a newsletter able to make a donation of £250 from touch to let you know. We told the group about plans to with reminders of the next meeting. donations made throughout the year evaluate our volunteering services and at our monthly meetings and collection Moving into asked the volunteers to tell us about any tins at the information tables. Northumberland feedback they have received. Comments volunteers sharing their ideas and “I am very grateful to all those who committing to putting some of them e are now planning to were wide-ranging and all showed come to the meetings (some far afield) into practice. develop our services in the positive impact of the group, with and those who help with the meetings. In November, we held a development WNorthumberland and will be one commenting: ‘the group has more We are very friendly and if you feel you group with a mixture of helpline contacting everyone in the area to impact on our lives than any of the would like to join us we meet on the last assistants and support workers. The let them know of our plans. We are support services.’ Friday of the month 11.30am - 1.30pm Cathy Howarth day covered topics including research, aiming to hold a meeting in the After this very positive session, Scott January to November.” brain donation and working with Hidden talents next few months to which everyone Smith, Fundraising Officer, challenged Members of the Woking group had a other organisations. The question and Sheffield will be invited to hear about what the group to come up with new ideas fun and creative meeting trying out for fundraising. The winner was a plant answer session led to some interesting OAN Weatherington will be handing research is taking place, have the their artistic skills. The results were so potting/singing session and a lot of discussions. over the reins of the Sheffield opportunity to share experiences good group co-ordinator Betty Peers, interest shown in a virtual race, which has A huge thank you to all of our Jgroup to Sheila Bargh and June and knowledge and hear how we decided to make them into a calendar. subsequently been launched, 5K for PSPA. volunteers that attended the two days Draper, who have agreed to share the are planning to improve support for The group are now selling the calendars Wendy Crofts, Volunteering Services and shared so openly your thoughts and responsibilities for the Sheffield group. people in the area. We look forward to family and friends to cover the cost of Manager ended the day with a experiences. We look forward to seeing Joan will still be attending the group. to seeing everyone there. their meetings. session on taking care of yourself with you all again soon.

22 PSP Matters WINTER 2018 23 YourFundraising fundraising

“I felt compelled to do something in Dad’s memory.” Determined to run Chris Underwood raised £2,300 after setting himself the gruelling challenge of cycling FTER two years fighting through nine countries in just nine days – a truly incredible dare to take on! Chris tells to recover fitness after the story of his challenge. a football injury left him Aneeding major surgery on his “ fter my father, Brian, died from knee, Robin Hood Half Marathon PSP in 2016 I felt compelled to runner, Rob Hallam was greeted do something in his memory, Fundraising ball in memory of Mum ATE Pollard raised of people who came to pay at the finish line by his family and Asomething which would also raise young son.“This was a real challenge an astonishing their respects was incredible. money for PSPA. £4,270 in memory On that day, as the sun set, I for me, so I am pleased to have My dad had always been a naturally Kof her mum, Christine decided I would organise an completed the race,” said Rob. “I adventurous type. I didn't have much Banner, when she organised event in mum’s memory. A wanted to do something in memory experience of adventuring myself, but a wonderful fundraising chance for us to get together of my father-in-law, Chris Yoell – and I did commute to work by bike, and ball. Guests enjoyed live again and celebrate what as we all live in Nottingham, this so it struck me that perhaps a cycling music, a three-course meal a wonderful woman she seemed a fitting choice!” challenge might be an option. and a disco too. Kate said: was.” The night was a huge I did my research and discovered that “My wonderful mum sadly success. Kate said: “It was if you kept your distances up you could lost her battle with PSP on 14 February such a memorable, emotional, amazing cross a national border in Northern 2016. The day of my mum’s funeral was night. It was so much more than I had Europe every day, for more than a week overwhelming for me, to see the number dreamt it would be.” on a bike. A challenge was born: 9 Countries in 9 Days. “Just after dawn on a misty June Stamps, glorious stamps! morning I set off from home. The first day arah Robinson’s dad Gerald involved cycling through both London Marshall, had CBD and only lived and Paris; very much an ‘in at the deep for four years from diagnosis. end’ approach with my first experience the Rhine further the following day, all towards Luxembourg City. SSarah describes the impact on the of cycling abroad. Shortly before the way to Lake Constance, stopping for While following the Rhine we had family and why she wants to help PSPA. midnight, after many hours of train travel, lunch in Bregenz on the Austrian border, managed to stay relatively flat for much Sarah said: “It was a devastating illness I arrived in the small Swiss town of Chur, and that evening in Konstanz (Germany) of the journey so it seemed ironic that for him and also us, to watch helplessly, overshadowed by the Alps, and under a at the northern tip of the lake. as we entered the Low Countries we hit unable to do anything to stop the blanket of torrential rain. Here I met up “I was joined by a friend in Konstanz, the hills. From Luxembourg we ventured progression of the illness. He was very with my brother, who would be joining as my brother had to return home, and through the forests of the Ardennes and brave, never moaned and has inspired me for the first few days. together we headed north and into into the town of Spa. us to smile and keep going. Rob's wife, Annie, is delighted that storm clouds hovering ominously over “Our final morning's cycling took “I raise money for Dad’s Much Loved through this run – and with support the already pretty ominous Black Forest. us from Spa to the Dutch border near memorial page in lots of different ways. from the wider family – they raised We spent a day crossing from one side of Maastricht. I felt quite emotional as I saw For the last two years, a group of us over £1000. the forest to the other, resting in Freiburg that the road signs were now in Dutch. collect stamps to raise funds. I also have “Dad, received a late PSP diagnosis that evening and then picking up the There was no grand border crossing to 20 people who collect their spare change but the help given by PSPA was Rhine again the next day. We rode from officially denote my achievement, just in jars I made, called jars of hope. I sell for each other to get through and support invaluable,” added Annie. “We all there into Strasbourg. a gradual fade from one language to Gerald’s daffs each September and Hope Dad. My amazing Mum never left Dad’s wanted to show our appreciation “The following day we headed through another. I felt proud, too, not only to have the bear gets involved too! side, and we have all emerged stronger for a charity so close to our hearts “From Switzerland we followed the the Vosges and then back into Germany achieved my goal, but in raising over two “I pray one day there is a cure for this through their great love and bravery. I – we were overwhelmed by the generosity of friends and family. Dad turbulent course of the Rhine, over a and the Saarland, the country's industrial thousand pounds for PSPA. It had been devastating illness that robbed Dad of would like to thank PSPA who helped would have been very proud.” covered wooden bridge and into the tiny heart, spending the night in Saarbrucken. quite an adventure. I like to think my dad his retirement. The illness devastated our us through those dark days and we will principality of Liechtenstein. We chased The next day demanded a steady climb would have approved.” family, but it also strengthened our love continue to help in whatever way we can.

24 PSP Matters WINTER 2018 25 Awareness Fundraising

Hope’s adventures Promotions – be excited for 2018! Hope, our awareness-raising mascot, now has her own diary. RideLondon Here she will tell you all about the places Surrey 100 she’s been around the world, and the people she has met... 29 July 2018

OIN our biggest-ever team at the UK’s biggest cycling event! #TeamPSPA will Jonce again be at RideLondon – Surrey 100 for another spectacular day’s cycling. Take in the capital through traffic- free streets before winding through the stunning Surrey countryside, then cross the finish along The Mall for a triumphant finish. Time to get Happy New Year! in the saddle!

2018 is shaping up to be something quite special indeed. am learning the Tibetan bowl wearing my favourite happy Not only will I be attending some incredible events again hat when I visited Paula Nightingale in Nepal. Yes, it’s Great such as the London Marathon, Great North Run, and difficult without opposable thumbs, but as ever, I excelled. RideLondon – Surrey 100, I will also be joining in the Closer to home I got into the Christmas spirit with a visit North Run first ever 5k for PSPA! I’ve already got my running app to the Hertfordshire local group’s Christmas afternoon tea. Newcastle downloaded, my new PSPA headband on, and I am ready. The group was treated to the afternoon by the Redbourn It’s going to be quite the occasion. I can’t wait to hear about WI and the Redbourn Singers. Thank you very much to 9 September 2018 all those taking part and where they will be running. It’s a them for a wonderful afternoon. HE world’s most-famous doddle to sign up and take part too, even for a bear. I am always ready for my next big adventure, whether half marathon takes And if a bear who ate way too much over Christmas and is that’s on far-off shores in the remote places of the world, place on 9 September in need of a little exercise can take part, then I am sure you or simply visiting friends and loved ones. I am always here Tand you can be part of can too! It’ll be a great way to support those living with PSP to raise awareness and bring a smile to faces so please take #TeamPSPA! 2018 will see our & CBD. me by the paw and whisk me off on your holidays or days biggest-ever team don PSPA out, and together we can raise awareness of PSP & CBD. It’s colours to take part, and we just As ever, my travels last year took me across the globe what I do best! might have a place for you. raising awareness. If I wasn’t in the steamy jungles of Cambodia, I was high up in the Himalayas in Nepal. Here I Now I must get on with my training for 5K for PSPA. Space is limited so please be quick in registering via our website, or email Remember, if you’d like me to come along to your fundraising events – drop me an email events@pspassociation. 2018: [email protected] and I’ll check my diary. Hope to see you soon. Love, Hope org.uk. Bring it on!

26 PSP Matters WINTER 2018 27 Yet again, our loyal – and often energetic – PSPA supporters have been out and about raising funds and awareness. Your fundraising Big thanks to everyone who has run, jumped, sipped or cycled!

On your marks… Peaky A vélo Brothers, Alex and Tom Devising his very own ‘Tour Jon Clayton ran in the Stephen Cassidy and his Joe Wood took #TeamPSPA The British 10k was held A fist pump from Jen Foulds Deb Barker crossed the Heywood – and friends – de France’, Andrew Helme Spanish heat to complete brother, Anthony, started - overseas and battled the back in July, and Panay as she finished the Beacon finish line of the Robin accepted the Three Peaks cycled from the Channel to the Valencia Marathon. and finished - the Woburn high temperatures in the Vassilou once again donned Bunny Run 10K. Jen wanted Hood Half Marathon – now challenge back in August in the Mediterranean – in just Joined by his sister, Abbey Triathlon together, Chicago marathon. his PSPA running vest to to fundraise for #TeamPSPA remembering her Dad who support of their Grandad, nine days! Debbie, (who had already for their dad, Patrick, who is finish the race. as her Mum is living with lived with PSP. Noel, who lives with PSP. In conquered an ultra living with PSP. CBD. his day, Noel was a semi- marathon for PSPA this year) pro boxer – winning 47 out they are supporting their of 50 fights. Dad, Norman, who is living with PSP.

£1,900 Go west Continuing her ‘12 events in £2,743 12 months’ epic challenge, £1,300 £885 Alex Ridout recently £570 journeyed to West Africa to Slurp! take part in the Sierra Leone In the Greek darkness, Tim Ansdell ran Exeter’s There was a great turnout Marathon. Patricia Vazquez Rodriguez Great West Run last year in Dawn Eastwood took on the £600 for a coffee morning to - a PhD student from Prof support of his Gramps who Manchester Half marathon remember Sian Ives’ son, James Rowe’s research team lives with PSP. as her friend, Emily, has Christine Stanley battled Darren, who lived with PSP. at Cambridge University - “It was fantastic to know recently been diagnosed through injury in the completed the Thessaloniki I was helping such a great £500 with PSP. She now has her Birmingham Marathon. Night Half Marathon. cause while achieving a eyes on London 2019! Jamie Crawford also ran in personal goal at the same Birmingham – finishing in time,” said Tim. “I managed to less than four hours. finish in 2 hours, 12 minutes £1,300 for a new personal best!” £510 £2,000 Steve Battershill completed the Manchester Half Marathon. …From Lilly too Raising funds in memory of her father, Lee Duffield, Lilly held a toe-tapping charity dance.

£550 £2,200 £430 £350 £1,050 £3,100

28 PSP Matters WINTER 2018 29 Your fundraising

Fancy Up and down Pedal power Best foot… Fore! Doh ray me It was ‘Man vs Mountian’ Michael Richmond and his two sons, alongside lots of other Niamh - and 19 others - ran Alison Heuvelink organised A grand charity concert at the Church of St Michaels and All footwork as Guy Barlow took part family members, cycled around Rutland Water - in memory of and walked the Limerick another successful golf day Angels, Underwood, in Nottinghamshire was organised by Will Eric Maddison organised in a gruelling 22-mile hike Michael’s wife, Marilyn. Mini Marathon in memory at Ludlow golf club. The and Moira Jones. a dance at the Poplar up, down and around of Niamh’s mother Anne. winning team plus lady Social Club in Accrington Snowdon. Together with Captain - left to right: Val, in memory of his wife, his pal, Rick, they toughed Carl, Guy, John, Jayne and Irene. Thanks also to Eddie it out in memory of Guy’s Alison. Pearson, Alison Park, David mum, Lynn. Baldwin, Eckhert Kranz and Stephanie Reickert for all their help. £3,415 Frilly effort Groovy! Mud, obstacles and Jayden Whitehair made the a tutu did not stop world a more colourful place £1,200 John Carmelitano from after he dyed his hair green conquering ‘Muscle Acre and purple! Remembering £840 Always a £1,130 10k’ last summer. his granddad, David Bill. smile £1,000 £2,205 How much? Family, friends and carers of Rock on Ding, dong! Julia is an artist and Chris Cooper joined together Music-loving Susan Walthall Michael Shepherd hosted printmaker who recently to celebrate his life with a compiled her own rock a musical event with a Virtual Run Aghhhhh held a ‘guess the weight of ‘Smile for Chris’ fundraiser, concert. folk group and bell ringers Virtual Runner UK, which Three generations of the pumpkin’ competition at organised by Jenny Simpson. entertaining a packed room. organises virtual races for the Ferguson family fell her open studio event. Chris always had a smile – charity, and Run Mummy 13,000ft – but they were even on days when he didn’t Run, an online running not alone, they took work £319 feel on top form. network for female runners, colleagues from Hunter hosted a special virtual race Global with them! in October raising money “The dive was amazing Jog on! £100 Henrietta Freeman and furry for PSPA. Over 800 runners and if you ever get a chance friend, Zebo completed the took part. to do it you must,” said Milton Keynes ‘Dog Jog’ Jo Ferguson. “We even £450 £400 Pony and managed to get Hope Bear attached to my dad!” trap £60 £1,468 Trisha Luxton and her In memory of Jo’s Mum. La-la-lah Alison and Sammy Taylor, along with some talented Dartmoor ponies had a students, performed at St Barnabas Cathedral, Nottingham. fundraising and awareness Take a bow adventure on Dartmoor in A professional recording of one song is available to buy Theatre student, Lisa, produced an evening of acts called: August – they also sold their from iTunes. ‘A Nightmare on King Street’ own Christmas cards. £2,000

Send your fundraising pictures to: Email: events@ pspassociation.org.uk £7,000 £2,950 £875 £2,135 £860

30 PSP Matters WINTER 2018 31 We’re Striking back

PSPA’s new Strikeback Funds have been created for everyone who wants to fight back against PSP & CBD. If you want to channel your fundraising energy then our Strikeback Fund is for you. Raise funds for PSPA and we will distribute where it is needed the most. You can have your own fund or set one up with your family, friends or colleagues. Give your Strikeback Fund a name, register it with us and you are all set to go. You can hold fundraising activities, support our appeals, make donations and encourage people you know to do the same. Whatever you decide you will make a difference for families affected by PSP & CBD.

All the money in your Strikeback Fund will be recorded so you can see how much you have raised.

For more information, and to start your Strikeback Fund, please email the Fundraising Team [email protected] XX% or call 01327 322419. PSP Matters WINTER 2018