Page 1

Issue number 51

PSP Matters

Summer 2011

Holiday Planning • Assistive Technology • A Tribute to Bob

Contents 4.



News Update


Including EU Clinical Trial Register and regional Neurological Alliance updates.


News Update

Collaboration between a PSP nurse specialist and carers.


A carer’s experience, plus tips, hints and contacts for planning a holiday.


11. Assistive Technology

Advice on everyday aids that can support independence and well being.

15. Personal Experiences

A carer shares her experience of caring for her mum and how they are affected by PSP.


18. Research Update

How developments in MRI scanning can help us determine diagnosis of PSP.

21. Letters

A selection of your correspondence and information.

22. Fundraising

An update on events our supporters have organised or taken part, including the Virgin London Marathon.



26. Fundraising

A family’s decision to celebrate the life of their loved one by opening a Tribute Fund.

29. Upcoming Events

Read about the exciting and creative fundraising events you could take part in.

30. Support Groups

A list of support groups taking place around the country.

02 PSP Matters Summer 2011



Chief Executive

PSP Matters Executive Editor: Fergus Logan Editor and Advertising Enquiries: Rebecca Benney 01327 322416 Design and Print: BSP and Newnorth Print Ltd, Bedford Cover Picture: Heidi Elliot pictured with her mum, Jean Kinchin, shares her experience to help you have a great holiday. The PSP Association PSP House, 167 Watling Street West, Towcester, Northamptonshire, NN12 6BX T: 01327 322410 F: 01327 322412 PSP Matters is published three times a year. The views and opinions expressed in PSP Matters do not necessarily represent those of the PSP Association.

PSP Matters has a new look, and some new features, but overall I hope it is the same vibrant mixture of news, updates, tips and matters of interest that have made it so popular over the years. This time around, we are including features on some of the vital work we have funded in important cutting edge areas of research such as the increasing importance of MRI scanning in accurate diagnosis. We’ve tried also to give some helpful pointers in practical day-to-day matters, with some tips about useful aids for everyday living, as well as some advice on holidays. I do hope you find it useful. Potentially the most far-reaching and important decision the PSPA has reached in a long, long time is the decision to make membership completely free of charge to all people with PSP and their carers. This means that not only people who have been newly diagnosed, but also others who may have put off joining will now have immediate access to all the advice and services we offer and we hope you will all want to get involved in other ways, too. Already this year, membership has increased at more than three times the old rate, which is enormously encouraging. So welcome to all new readers. As well as the features on research and everyday living, we have tried this time round to give a flavour of the different ways in which you can get involved and, we hope, feel part of a joint effort. In particular, we very much hope that friends and relatives of our new members will want to join in with some of our fundraising activities. There are plenty of examples of how you and they can do this – and have some fun along the way – on pages 22 to 29.

Fergus Logan Chief Executive The PSP Association Registered Charity Numbers: England and Wales 1037087 / Scotland SC041199

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Working for a World Free of PSP PSP Matters Summer 2011 03

News update

EU Clinical Trials Register goes live Public online register gives access to information on clinical trials


he EU Clinical Trials Register It is provided by the sponsor of the ( was clinical trial, and is a component of its launched on 22 March 2011 by application to a national medicines the European Medicines Agency (EMA). regulatory authority for authorisation The online register gives, for the first to conduct a trial. The information from time, public access to information on the sponsor is loaded into the EudraCT interventional clinical trials database by the national for medicines authorised in It increases medicines regulatory the 27 EU member states authority. The authority transparency and Iceland, Liechtenstein adds to this information and Norway. The database the authorisation of of medical also allows the public to the clinical trial and the research...” search for information on opinion from the relevant clinical trials authorised to be carried ethics committee. Information on out outside the EU if these trials are part third-country trials that are listed in a of a paediatric investigation plan. paediatric investigation plan (PIP) is The information contained in the EU provided by the PIP addressee directly, Clinical Trials Register is extracted from via the EMA, to the system. EudraCT, the EU clinical trials database. Throughout the project the Agency

worked together with stakeholders, including patients and healthcare professionals, to ensure that their needs were taken into account, to the extent possible at this stage, when designing the register. Lise Murphy, Co-Chair of the Agency’s Working Party with Patients’ and Consumers’ Organisations said: “We welcome the launch of the EU Clinical Trials Register. It increases transparency of medical research and will make it much easier for patients to find information about clinical trials taking place in Europe. We are committed to continue working with the EMA to further develop the system so that it becomes a valuable and useful resource for patients across the EU.” The Agency will continue to work with stakeholders to improve the functioning of the EU Clinical Trials Register; in particular by enhancing the quality and completeness of data, and improving the search functionality. Plans for the future also include the publication of summaries of clinical trial results, on which draft guidance has already been published for consultation by the European Commission. Publication of trial results summaries will require a major upgrade to the existing system, the start of which will depend on finalisation of the guideline and availability of budget and resources.

Lancashire and South Cumbria Neurological Alliance (LASCNA)


arious charities including the PSP Association, Parkinson’s UK, MND Association, Huntington’s Disease Association, Epilepsy Society, and the MS Society took part in an MPs’ Event Day at St John’s Hospice in Lancaster on 11 March. MPs and mayors from Lancashire and South Cumbria attended a morning presentation by LASCNA (Lancashire and South Cumbria Neurological Alliance) to highlight the needs of people with 04 PSP Matters Summer 2011

long term neurological conditions in the Lancashire and South Cumbria areas. Delegates heard about the importance of retaining specialist nurses and supporting hospices to provide adequate palliative support to the growing number of people with long term neurological conditions that now need care. The Strategy for Rare Diseases UK: Improving Lives, Optimising Resources was also distributed to the delegates via the

PSP Association, and Paul Maynard, MP for North Blackpool and the Fylde, showed particular interest as he knows a constituent in his area who has CBD.

Neurological Alliance Ireland survey


n the last issue of PSP Matters we mentioned the nationwide survey on neurological care in Ireland. The survey run by the Neurological Alliance Ireland (NAI), which represents 30 neurological charities and 700,000 people across the country, has now been completed. Many of our members in Ireland took part. The NAI’s THINKING AHEAD campaign, to make neurological care a priority for the Government, revealed that: • 38% waited longer than six months to be diagnosed • 42% experienced more than a six month delay in receiving vital services • 58% identified shorter waiting times to see a consultant as the change that would have the greatest impact • 81% view voluntary organisations as essential or very important in providing services and support. Commenting on the survey results, Anne Winslow, Chair of the NAI said: “We have repeatedly pointed out that further cuts to state funding for neurological charities will compound the dreadful state of neurological care

experienced by 700,000 people and their families in Ireland. The incoming Government must engage with our Action Plan for Neurological Care and realise its obligations to more than 700,000 people with neurological conditions and their families. It can do that by putting in place the framework of statutory and voluntary services that is so desperately needed.”

Thinking Ahead campaign Since the launch of the campaign in March 2011, more than 60 political candidates have already pledged their support for neurological care following a call by NAI.

Date for diary: Annual Symposium The PSP Annual Conference will be held in London on Wednesday, 28 September 2011 at 20 Cavendish Square, London, 9-4pm. Chaired by Palliative Consultant, David Oliver, the day will feature expert speakers on a range of research and care topics including behavioural aspects, communication, aids to help with everyday living and later in life planning. Booking is only £35 for PSP Association members or the early bird rate for health and social care professionals of £50 (until 1 July),

otherwise £60, and includes lunch and refreshments for the day. Places are limited so book early. For more information or to book please contact or 01327 322415 or see our website www.

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Irish charities save the state millions of euro each year...”

‘Thinking Ahead’ calls on the incoming Government to develop services, working in partnership with neurological charities, which meet the needs of people with neurological conditions for diagnosis, treatment and long term support and rehabilitation. A key element of ‘Thinking Ahead’ is the critical importance of charities to neurological care in Ireland. Irish charities save the state millions of euro each year by subsidising the cost of neurological care through fundraising for vital services, including specialist nurses, physiotherapy and home care supports and through mobilising volunteers. The health service is reliant on the expertise and experience of these charities to provide specialist care and support to people with neurological conditions and their families For more information or to support the campaign, please visit www.

Scotland consultations We are delighted to report that PSP Nurse Specialist, Katie Rigg, has been invited by Parkinson’s Nurse Specialists and Care of the Elderly Consultants in Ayrshire to conduct joint consultations for people with PSP. Katie has attended one clinic so far, with positive feedback from patients to PD nurses, who are reviewing next steps with the consultants.

Please note:

We have uploaded to our website a DVD by Lawrence I Golbe MD, called The Diagnosis of PSP where he talks about three stages of the disease process, which you may find useful. PSP Matters Summer 2011 05

News update

Collaboration between PSP nurse specialists and carers

Roger Grand gives a carer’s point of view

The dictionary definition of collaboration is ‘working in combination’.


he relationship formed between only my concerns but also how the the PSP nurse specialists and carers particular problem is, to the best of my is a prime example of a working knowledge, affecting my wife. combination between people with a Due to the rarity and lack of common interest. awareness of PSP, I normally refer my This collaboration: requests for help and guidance in the • is a partnership that has the goal of first instance to our PSP nurse specialist. providing information and support for As specialists the nurses generally have the benefit of the a far better understanding carer or the patient of this complicated disease The dictionary than our GP. I then refer the • is totally dependent on trust and definition of advice given to our GP. openness A recent example collaboration • is confidential highlights the importance is ‘working in of such collaboration: My • is often between parties who have combination’... wife is in the later stages of never met, and is PSP with loss of mobility, conducted over the phone balance and speech, no downward • provides a knowledge feedback to the gaze and compromised swallowing / nurse and the PSP Association. choking. If that was not bad enough I have often used the helpline to discuss she was recently diagnosed with cancer. numerous subjects relating to PSP and We were obviously concerned about its impact on my wife (changing medical this and worried about the impact PSP conditions, medication, behavioural might have on treatment options. I changes, etc) and myself as her carer immediately contacted the PSP Nurse (how to manage such changes, how to Specialist, Kat Haines and asked for help. cope, what to do next, etc). Our case is We discussed the likely options and further complicated by my wife’s loss of Kat undertook to investigate further speech, so I have to try and convey not so we could be well prepared before

06 PSP Matters Summer 2011

our cancer consultation. Within a few days Kat rang me with a very detailed statement on the pros and cons of each option so we could make the best and most informed decision in conjunction with our GP and the consultant. Kat’s input proved invaluable and because we could make an informed decision we felt more reassured and confident that it was right for us. Without Kat’s help we would have felt very lonely and insecure. My wife has since had her surgery and is recovering well. Further collaboration took place when I advised Kat that the disability officer from the hospital had, at my request, visited us at home prior to my wife’s admission and prepared a very detailed care plan to cover all her care and support needs whilst in hospital. This was made available to all the ward nurses so that even though they were unaware of PSP, they had a clear understanding of her needs in addition to those that a ’normal’ patient would require. The hospital nurses all agreed the plan had proved to be a considerable help. (See Roger’s experience on Assisted Technology page x) Collaboration between PSP nurse specialists, individuals and/or carers is a vital tool in the kit bag of support given by the PSP Association. Collaboration is also evident at each PSP local support group meeting, where nurse specialists are on hand to discuss and advise either individually or in group discussions.

Bernard Petticrew collecting a cheque for £1,500 from Leicestershire and Rutland Masons.

Northamptonshire Chamber Charity of the Year

(L-R) Chamber Golf Society Captain Andy Cockerill (also Chief Executive of Cave & Sons), Cameron Wood from the PSP Association, and Tracey Branson, Head of Operations at Northamptonshire Chamber

Neurological Task Group, Leicestershire – volunteer representative The Leicestershire and Leicester LINks (Local Involvement Networks) has established a joint neurological task group. The group was visited at the last meeting by Helen Mather, Divisional Manager for acute services at University Hospitals of Leicester NHS Trust who answered a variety of questions raised by the group about neurological services and changes affecting future services. The meeting was informative and created the foundations for future work and involvement between the Trust and the group. A work plan has been devised to look at how the group can engage with the emerging GP consortia and influence neurological services across Leicester and Leicestershire. There is a vacancy on the group for a representative for PSP carers and patients. If anyone would be interested in becoming involved with this group please contact Maureen on 01900 819088 or email maureen.fowler@ for more information.


work and raise money through staff very year the Northamptonshire fundraising activities and a corporate Chamber nominates a local golf tournament. The Association was organisation to become its sponsored Charity for the Year. Chamber also given complimentary membership of the Chamber’s Business Alliance charities are those that work tirelessly Group (BAG), which in helping to improve the lives The PSP Association enabled us to network with some of the most of many in the worked with the influential companies Northamptonshire in the county, meet community. Chamber to raise with local MPs and For 2010/2011, awareness of its benefit from increased the Chamber work...” media coverage. Being adopted the PSP members of this group Association. During also led to Keith Bird of ACS, a fellow its time as the Chamber Charity, the BAG member company, volunteering to PSP Association worked with the run the London Marathon on 17 April in Chamber to raise awareness of its

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(L-R) Debra Chand from the PSP Association, Paul Griffiths, Chief Executive of Northamptonshire Chamber, Helen Porter from the PSP Association.

aid of the PSP Association. Keith is hoping to raise over £2,000 in sponsorship money for the Association. (Read more about Keith’s Marathon run on page 24.) PSP Matters Summer 2011 07


and a wheelchair bound passenger. We were met by a driver with a vehicle large enough to just wheel Mum straight in. He took us directly to the hotel door which had manageable ramps too. The hotel couldn’t have been more accommodating. There was a lift, fully tiled floors in all rooms, nice wide accessible wet rooms, and whilst they didn’t initially have grab rails or a nonslip mat, once we explained what we needed the hotel manager went out and bought the equipment not only for our room, but for all the disabled rooms

“ Planning holidays

Me and Mum

The holiday season is here again... PSPA member, Heidi Elliot, shares her experience, with hints and tips to help you have a great time.

Our holiday to Majorca May 2010


um and Dad have always been sun worshippers and love to travel. In January last year my Dad asked my sister Mandy and me if we would like to go away with them, primarily to help out with Mum, but also as company for Dad as Mum can’t speak anymore. We were fortunate enough to come across www. and were soon booked to fly to Majorca in May 2010. Sunshine here we come! Mum was first diagnosed with 08 PSP Matters Summer 2011

PSP 13 years ago. Her condition has deteriorated and we have our good and bad days but on the whole we are very lucky and we don’t let it stop us. Don’t get me wrong, we were apprehensive about this holiday. We had all the usual concerns: ‘Would we all cope?’ ‘What do we do if things go wrong in a foreign country?’ ‘Will they understand us?’ ‘How do we get her medication through the airport security checks?’ The list was endless. We worried unnecessarily. Disabled Access Holidays took the strain and arranged everything for us. We had assistance at the airport both in the UK and Majorca; a must with luggage

We couldn’t forget Mum’s exercises though and Mum soon made it known to us that she wanted to go on a pedal car.”

in the hotel. There was a hoist to lower Mum in and out of the pool too! We ate out most evenings and walked along the promenade looking in the shops, stopping for cocktails and beers along the way. We found a male vocalist in a bar who could impersonate all Mum’s favourites... Johnny Mathis, Nat King Cole and Frank Sinatra. We couldn’t forget Mum’s exercises though and Mum soon made it known to us that she wanted to go on a pedal car. Yes, we managed that too, we had to tie Mum on it with a luggage strap to make sure she didn’t fall off, but it was one of the main highlights of our holiday! She absolutely loved it. In fact, to be honest, I hadn’t heard her giggle like that in years, it is a memory we will treasure for ever. We set alarms on our phones for when medications were due and took it in turns to get up and down to Mum

Me with Mum and Dad

when she was relaxing by the pool and needed things. We were all good company for each other and despite the pressures which were inevitable we had the time of our lives! My Dad deserves a medal, bless him. Mum spends one week in three in respite care now and we may soon have to consider nursing care but we are still planning our next holiday – Mum rather fancies a cruise!

Disabled Access Holidays Website: www.disabledaccessholidays. com/contact_for_Disabled_ Access_Holidays.asp

Mum and Mandy

Tips: 1. Ask your GP for medications to be made available in liquid format. Mum had difficulty swallowing her tablets which caused a lot of stress at mealtimes. Mum now has her medication in a syringe mixed with orange squash and it is so easy to administer just by squirting it into her mouth. If only we had known about this beforehand! 2. Also if you are taking lots of medication with you, you usually need a letter from your doctor to the airlines explaining what the medication is and who it is for. If you are travelling to a foreign country make sure you have the letter in their language too, as it makes life easier on your homeward journey. 3. Take a non-slip mat and grab rail with suction cups available from all good mobility shops just in case. 4. Whilst we regularly covered Mum from head to foot in sun cream to prevent her from burning, we forgot to put lip balm on her lips. She fell asleep in the sun with her mouth open and burnt her bottom lip. 5. Book your seats on the flight if you need to be close to the toilet. The airline will make sure you board the airplane first if you tell them you are travelling with a disabled passenger. I hope our experiences help others who are considering a holiday. Mrs Heidi Elliot, Gillingham Kent. Follow us on Twitter @pspassociation

Holiday Hints A well-planned holiday can provide a much needed break for you, your family and friends. Think about the type of holiday and destination that appeal to you (and your wallet) first, and then tackle the practicalities of access, rather than ‘limiting’ yourself at the start. Friends, travel agents, books or programmes can be a good place to begin, and there are plenty of specialist travel companies who can advise. Be completely honest about your condition and its effects, and prepared to compromise if needs be. A phone call well in advance, and just before departure, can check aspects such as how suitable and accessible the accommodation is, (including available parking, how far from the nearest bus stop or train station and how steep the local terrain is), what assistance staff can provide, whether full time carers are available if needed, and what activities and local tours are available. Any aids to daily living can sometimes be arranged through the British Red Cross branch nearest your holiday destination. Many insurance companies will cover PSP - you must declare your medical condition and its effects, and your premium or excess may be higher because of your diagnosis and as medical care is more expensive in some countries. If finances are a barrier, Citizens Advice Bureau can advise on local funds to help and your local authority may also be able to provide support for a carer’s short break. The Holiday Care Guide also lists trusts and funds that can offer financial assistance. See Handy contacts for details. There are plenty of companies who can advise you – we have listed a few contacts here and our Holiday leaflet has many more – phone 01327 322415 or email for a copy. PSP Matters Summer 2011 09

Holidays Handy contacts summarises the major airlines’ policies towards disabled passengers and has a database of over 2,000 UK hotels with disabled access. British Red Cross offers social care, support and advice to vulnerable people as part of its humanitarian aid work. or 0844 871 1111

Citizens Advice Bureau – provides free, confidential and impartial advice on individual rights and handy information on many topics including disability. or 08444 111 444 for your nearest branch. Directgov lists public services, including links to local authorities to apply to for a short-term break and/or find out more. www.

Beach Wheelchairs


orking closely with the ‘East Coast Local Action Group’, East Lindsey District Council is hosting four Beach Wheelchairs for your use; this means everyone can join in and access the beach! You can use the wheelchairs FREE of charge. A £20 deposit is requested which is refundable when the wheelchair is returned undamaged. As the wheels on the chairs are not self propelling, you will need someone to push you. While you enjoy the beautiful beaches council staff will be pleased to look after your usual wheelchair. The wheelchairs are available all year round and are located at: • Skegness Tourist Information and Box Office on 0845 6740505 • Mablethorpe Beach Chalet Office 01507 473641 (May – September)

Holiday Care provides holiday information and support for people with disabilities including respite care; inspected accommodation; a reservation service with discounted rates at inspected accommodation in the UK (call their Reservations Helpline 08451 249973); a Holiday Care Guide (send 4 x 1st class stamps) and a Care for Carers booklet on holiday and short break accommodation with inbuilt care services, price £1. 7th Floor, Sunley House, 4 Bedford Park, Croydon, Surrey CR0 2AP www. or 08451 249971. Livability offers a wide range of holiday accommodation for disabled people. or 020 7452 2000. RADAR (Royal Association for Disability and Rehabilitation) produces a range of information including on insurance. See their book on Holidays in Britain & Ireland and Access to Air Travel. 12 City Forum, 250 City Road, London EC1V 8AF www. or 0207 250 3222. Tripscope has a range of information on holidays and other useful topics such as assistive technology. Vitalise provides holidays for people with physical disabilities at five purpose-built centres in England, all with 24 hour nursing supervision. or 0845 345 1970

• Sutton on Sea Beach Chalet Office 01507 443765 (May – September) • Seacroft Mobility Mablethorpe 01507 473500 (September – May) Please phone or call in to book your wheelchair. If your council isn’t offering this service, keep badgering or set up an action group! 10 PSP Matters Summer 2011

Do you have a similar story you would like to share? We would welcome your contributions to future publications of PSP Matters. Letters or written articles can be sent to the Editor at PSP House, 167 Watling Street West, Towcester, Northants, NN12 6BX or emailed to

Assistive Technology

Assistive Technology – what is that? Technology is developing all the time – here Speech and Language Therapist, Sue Lord, shares her expertise on everyday aids that can support independence and wellbeing.

A “

ssistive Technology, what’s impossible to use a handset to manage that?” seems to be the standard this, we can offer a variety of switches response when I start to explain and buttons which can be activated by what I do. Even though technology any comfortable movement, to control has permeated every other aspect our devices. If you have difficulties with of our lives, there still seems to be your vision, we can provide controllers a knowledge gap when it comes which can talk to you, but most to equipment which can assist you importantly, each system is tailored to within the home, meet your needs and particularly the highcan be adjusted to ...each system is tech equipment. meet these needs as tailored to meet The aim of Assistive they change and best your needs and can of all, in most areas Technology services is to increase your be adjusted to meet of the UK, provision independence by an environmental these needs as they of providing you with control is completely specialised remote change...” free through the NHS. control equipment Funding for computer to enable access to intercoms, handsaccess or a communication aid can free telephones, remote controlled sometimes be a little trickier, but a sockets, light controls and, increasingly, solution can often be found with a little access to a computer or voice output hard work. communication aid. Where it’s Environmental Control Services

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(often known as Assistive Technology or Electronic Assistive Technology Services), differ slightly depending on exactly where you live in the UK. Some services are a little smaller or larger than others, but if you want to know if Assistive Technology can support you or your family member, get in touch with your occupational therapist, social worker or care manager, as they should be able to point you in the right direction. Not all Environmental Control Services are currently able to offer computer and communication support, so speak to your local speech and language therapist or occupational therapist or look at www. for more details on communication aid assessment services. As a speech and language therapist, I am most involved in supporting people who need computer access or speech output and it’s probably fair to say that this is one of the areas which has seen the most change in the past few years. From the fairly robotic voices of 20 years ago, which worked only on a machine the size of your average briefcase, we can now offer good quality speech output on many devices even as small as an iPhone, and we are able to offer a lot more access options as well, allowing virtually anyone to log on to Facebook, do their online shopping, or even just say something as simple and powerful as, “I love you”. Editors Note: As PSP can affect several areas at once, such as speech, sight and dexterity, solutions need to be individually tailored. We recommend you consult your health professional such as a speech and language therapist, occupational therapist, care manager or local Assistive Technology service for advice. Ask your GP to refer you if you are not linked up already. PSP Matters Summer 2011 11

Assistive Technology

Equipment sources: helpful charities and outlets

Possum Freeway 2

Assist UK – coordinates a UK wide network of local Disabled Living Centres. Each centre has a supply of products and equipment and assistive technology to view, so you can try them and get information and advice from professional staff about what might suit best. Their website has a search facility to find your nearest centre. or 0161 238 8776. Disabled Living Foundation – provides advice, information and training on daily living aids. DLF helps the general public and healthcare professionals find out about daily living equipment and assistive technology. They don’t sell any products, but can help you find people that do. DLF Helpline 0845 130 9177 (charged at local rate), or

Sleep Activ 500

Just Mobility – you can buy or sell used equipment such as adapted vehicles or mobility products on this site. Just Mobility or call 01923 265577 ABLE – the disability lifestyle magazine and website, has both a second hand goods and a wanted section. (Small charge to advertise.) 0141 419 0044 or write to Craven publishing, 15-39 Durham Street, Kinning Park, Glasgow G41 1BS RNIB and RNID – for advice and aids for all sight and hearing issues, with online shops and opportunities to view and try out equipment via their regional centres. RNIB uk or 0303 123 9999. RNID or 0808 808 0123 Independence at Home – provides grants towards goods and services to improve the independence, comfort, safety, and quality of life for people who are managing long-term illness and disability at home. (Grants range between £150 and £750, most being under £300.) www. or call 020 8427 7929 Parkinson’s UK – people with PSP or CBD in the UK who have less than £10,000 in individual or £15,000 in joint savings can apply to the Mali Jenkins Fund via Parkinson’s UK (formerly the PD Society) for grants for equipment, home adaptations or respite breaks. The fund won’t cover ongoing costs or items already paid for, and a letter of recommendation from an appropriate professional will be required. Free Helpline 0808 800 0303 (9-8pm weekdays, 10-2pm Sat). 12 PSP Matters Summer 2011

Remote controlled socket

For communication aids: Toby Churchill have items to purchase but will do home visits to assess and arrange a trial loan period, to ensure equipment is suitable. Tel: 01954 281210, Communication Matters may be able to advise. 0845 456 8211 Family action, welfare grants between £100 to £300. The Aidis Trust, 020 7426 2130 The Sequal Trust, 01691 624 222 Turn To Us also has a list of funding sources

A carer’s experience PSPA Member, Roger Grand comments:


n August 2010 I become aware of our Assistive Technology team in the North West and have had a number of discussions with them They have already provided us with some useful kit that enables my wife to do a number of things that previously were virtually impossible because of her lack of mobility and dexterity. By pressing one large green button that connects to a small communications unit she can now switch the TV ON/OFF and change channels, turn lights ON/OFF, page me around the house, ring my mobile or call for help via her Lifeline system. Encouraged by this I then discussed speech/communication aids with the Assistive Technology team as my wife had also lost the ability to speak. After a further assessment we have been provided with a small Fizzbook laptop loaded with GRID2 speech software. This is a touchscreen system that

of Assistive “ Use Technology has

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proved a great success and given my wife a little independence back.”

allows her to point to icons on the screen, such as a picture of a cup and the system speaks: “Can I have a cup of tea please?” The system is very flexible and user adaptable, to meet individual requirements. A significant benefit is that the system has various modes of operation and for those who have difficulties with sight, co-ordination and motor skills there are a number of options available. (This is a major difficulty with some of the alternative equipment such as the iPAD which my wife tried but was unable to use.) Use of Assistive Technology has proved a great success and given my wife a little independence back. I would strongly recommend that any PSP member who has similar difficulties contacts their regional Assistive Technology team and requests an assessment. The service is provided via the NHS and is not means tested. (See Collaboration between PSP nurse specialists and carers, page 6)

Editors Note: Some people have found the Ipad, with software such as Proloquo2Go, useful in aiding communication, while others have found the Fizzbook (Notebook size laptop) with a system called Grid2 more useful. also has a range of equipment available, and our web forum www. has more discussion about handy aids. Speak to your health professional for advice on what might work for you. PSP Matters Summer 2011 13

Assistive Technology

Computers 4 Carers


or the past few years C4C has campaigned for computers for carers and received a number of laptops from Norfolk County Council, Virgin Money and other companies or from the general public, which have been sent out free to carers and excarers across the UK.  For adult carers often up in the middle of the night looking after the person whom they care for, websites such as Chill4us ( can provide much needed support through online advice. Their members have experience in all aspects of care needs and if they can’t answer your question or help to solve your problem they may know someone who can. There is also our own PSP web forum – a great place to share with others who understand what you are going through, and of course our own PSP Nurse Specialist team at the end of the phone to advise. Plus, our members are welcome to link to Cure PSP’s online support groups any time by visiting online-support-groups.html 14 PSP Matters Summer 2011

For more information on how to apply for a laptop, please visit www.

web forum – a “ PSP great place to share with others...”

Help someone you know get online If you’re new to the internet, by visiting you’ll find some useful instructions for using email, joining Facebook or Twitter, sharing your photographs on Flickr, or even using video calling such as Skype to talk to friends and family over the internet whether they’re down the road or on the other side of the world. Getting online doesn’t just make sense from a financial point of view, opening up a world of cost savings, but for many the internet can provide an invaluable way to stay in touch with friends and family around the world. Whether you’re just starting out with email, Facebook or Twitter, or you’d like to help a friend or family member to make the most of the social possibilities that using the internet can bring, sometimes it helps to have a few suggestions and tips on where to begin. Age UK has listed its top ways to start socialising online. You could also use them as a guide to the sort of online activities you can introduce to a friend or relative. You could also visit www. for more information on free computer courses and help getting online.

Prism glasses PSP can restrict eye movements, limiting the ability to see. Prism glasses can help to compensate for gaze problems and, used for short periods, can help someone to watch television, see family and friends and enjoy mealtimes again. Thanks to the support of a trust (which prefers to remain anonymous) we can supply prism glasses free of charge. (We would be grateful for a voluntary contribution to cover our handling, postage and packing costs.) Please return the glasses to us if you find they are no longer useful and we will recondition them ready for someone else to use. (Note: not suitable for use when walking.)

Personal Experiences

She’s still my mum

Fiona with her mother, Ann

Here Fiona McLaughlin shares her experience of caring for her mum and how they are affected by PSP.


nn Brogan is my mum. She resulting in black eyes, cuts and bruises. was widowed at 50, lived in She didn’t feel dizzy- she just fell. Spain for a while, came back to These falls were unpredictable and she Omagh, worked stopped going to and got remarried. yoga and dancing I was talking to my after falling in public By 60, she had grandchildren, a mum a couple of and becoming happy home life times a week on the increasingly self and would drive to conscious. She phone and began to got prisms on her Belfast on a whim to get her hair done, notice that her speech glasses to deal to babysit, or to with double vision was a bit funny.” bring one of her in January 2005, elder siblings for and stopped driving. Ann saw her GP hospital appointments. She was very regularly, but talked about dry skin, or active, playing golf and indoor bowls, constipation, or anything at all to avoid attending set dancing and yoga. mentioning the falling. I was talking to Ann had a few unexplained falls, my mum a couple of times a week on

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the phone and began to notice that her speech was a bit funny - as if she’d had too much wine with her meal, or had got new false teeth. Except, she doesn’t wear false teeth and hardly ever drank wine. Eventually, I realised that she’d never told the GP about her falls (this, even though one fall had broken her ankle requiring surgery and two weeks in hospital). I went with her to the GP in July 2006, and helped her outline our concerns about the falling, the speech and the double vision. Blood tests were carried out and a referral to the elderly care consultant was made. He ordered a CT scan, and then made referral to a neurologist. In parallel, the eye guys were realising that the continuing deterioration of her eye movement was probably caused by something neurological, and would need to be checked out. By the time Ann saw a neurologist in January 2007, she was desperate for a label, something to call whatever was wrong with her. Once she had a label, then she’d get the medicine and all would be well. She’d not be a hypochondriac if she had a label. People would take her seriously if only there was a name for this. She had an MRI and saw the neurologist, but still had no label. She went to see another neurologist privately in June 2007. By this stage her symptoms included unsteadiness/ staggering, memory and concentration difficulties, difficulty getting up from sitting and with handwriting. We were told that she had a progressive condition and were given the label ‘progressive supranuclear palsy’ (PSP). I drove us back to my house, and put on the kettle and the computer at the same time. By the time the coffee was ready I had to lie to Ann and tell her I’d PSP Matters Summer 2011 15

Personal Experiences

Ann with her sister, Mary

Ann was referred to social services, only found heavy medical jargon, and and in order to provide the best care, would look again later. so was her husband, Liam, by now An appointment was made to see the diagnosed with Alzheimer’s disease. GP to discuss the diagnosis. He told us to look up the condition on the internet, Meals on wheels were organised and carers were provided to help Ann get as he knew nothing. I’d already done up and washed and to get to bed. that and then was in the unwelcome After some months, this was increased situation of having to give Ann some of to five visits per day. The support was that information - as if I knew anything! needed and very Anything I did know welcome, but felt I’d printed out from the Neither Ann nor a bit random; a PSP Association website. family member I copied this information Liam was fully referred to the to my mum’s brothers able to recognise succession of and sisters and to her all the challenges carers as being close friends. This meant that she didn’t have to facing them, and it ‘like Duffy’s circus’. Ann keep explaining her felt that the home norNeither Liam was fully diagnosis, and that those situation was able to recognise who care for her knew as much as we did. We very precariously all the challenges facing them, and joined the Association balanced.” it felt that the and were quickly home situation contacted by Sandra, was very precariously balanced. We the Association’s Development Officer were just waiting on a crisis. There for Northern Ireland, who has been an was an eldercare neck alarm, adapted incredible support. She, or the specialist bathroom, wheelchair, grips and other nurse based in England, subsequently OT aids, riser chair, door buzzer- the full became our first port of call for queries works. All of these things are great, but and concerns.

16 PSP Matters Summer 2011

nowhere near enough on their own. When Ann took a notion to wander down to the bathroom herself, then she’d just go. Reckless behaviour, simply not recognising the reality of the situation or seeing the potential for danger, is part and parcel of PSP. Liam was involved in an accident and was in hospital for some weeks. I moved in until respite care was sorted, and I was exhausted! Despite the array of carers, Liam was still doing an amazing amount for Ann, and he’s an elderly man with significant health issues. I’m over 30 years younger and I was struggling after only a few days. Ann went into a nursing home in her local area. We realised very quickly that the quality of care there was significantly better than anything we could organise for the home environment. Ann visibly relaxed, so we recognised just how really tense and anxious she had been. However, once Liam was fit to go home again, Ann wanted home too. We had a really difficult period where basically I became the villain of the peace, insisting that she stay in nursing care. Of course, she could have moved out if she’d been convinced, I couldn’t keep her there!

Ann with her granddaughter

Ann was always content with the care away from carers who knew her and anything other than good’, when I was and with the nursing home, but she her condition, to be upsetting. Ann expecting a simple grunt! didn’t like the idea of being in a nursing now receives her nutrition overnightAnn can’t read documents or sign home at 66. Who would? she spends 15 hours connected to the her name, so has granted me power of Ann uses the ‘Door2Door’ service pump. She is allowed to receive about attorney for her finances. I pay the bills to travel to the family home four three teaspoonfuls of soup or dessert, and organise the bus, do the shopping afternoons a week, and pays for a carer for taste. She can open her mouth just and all the other bits that need doing. to be there for three about the depth Sometimes I get overwhelmed by all hours at a time. She of a finger, which of that. Sometimes I get blindsided by She’s still there. hasn’t spent a night in also creates the series of little losses that will lead, She’s still Ann. the house since May challenges for inevitably, to the loss of my mother. She’s still my mum.” her oral health. 2009. She has had a What is wonderful is that in the middle few falls in the nursing Within a few of it all, she can still make me laugh, or home, like when she’s decided to get weeks of having the PEG, Ann seems keep me updated on who of the many out of the wheelchair for something, much brighter, her speech is stronger, relations is who, or talk about all the but none since just before Christmas and she can articulate more complex election shenanigans last May, or- less 2009. Ann gets many more visitors at sentences- when I was ending a phone wonderfully- criticise my clothes. She’s the nursing home than she had been call with, ‘Be good’, she responded, ‘I still there. She’s still Ann. She’s still my receiving when at home full time don’t often get the opportunity to be mum. people she hadn’t seen in years turned up once they were confident that they weren’t going to be an imposition on her. (In the nursing home, she’d not feel that she ought to be making tea and offering biscuits or tray bakes!) Ann’s vision is very limited, her eyes are almost closed, and she has difficulty tolerating light. Two carers take her for walks along the corridor, but she is in the wheelchair the rest of the time. Her walk is almost robotic and her neck is pushed far back- she has to be reminded to try to keep her chin down when walking. Her speech can be very difficult to understand at times, especially if she is tired. Her processing is slow as if she’s a few sentences behind you in conversation- so we have to pause and give her time to catch up, think of a response and then articulate that response. Ann with her daughter, Fiona and granddaughter, Megan In August 2010, Ann had a PEG inserted, requiring two nights in We would love to hear from you – why not share your experiences hospital. We were fortunate that it was with other readers. Contributions can be sent to the Editor at PSP a local hospital, so she didn’t have a House, 167 Watling Street West, Towcester, Northants NN12 6BX long way to travel, and could still have or emailed to visitors, but she found being in a ward,

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PSP Matters Summer 2011 17

Research to decide when to call the shape a ‘hummingbird’ and this depends on the person who is looking at the scan – it has a subjective element. There is also some variation in how different parts of the brain are affected in PSP so this appearance will not always be seen. This work was presented at the Association of British Neurologists meeting last year where it was awarded a runner-up prize in the poster presentations.


Image scanning by Dr Luke Massey

My work has focussed on MRI scanning in PSP. What is currently known is that MRI can be useful in making a diagnosis of PSP, but also that sometimes it does not help us give a definite answer. In order to probe this problem we have approached it in three different ways:


We have looked at the MRI scans of patients with PSP and other conditions including Parkinson’s disease and MSA who have donated their brains to the Queen Square Brain Bank. As some of you may know, there is sometimes Figure 1 uncertainty surrounding the diagnosis of PSP during life. We aimed to work out how accurate MRI scans were in cases where the 18 PSP Matters Summer 2011

diagnosis has been confirmed at post mortem examination of the brain. We found that there are some features on the MRI brain scan that are very useful. In fact one particular finding – the hummingbird sign (so-called because the images look like the silhouette of a hummingbird) – was only found in PSP cases confirmed at post mortem and not in any of the cases of Parkinson’s disease or multiple system atrophy. Unfortunately, however, it was seen only in two out of three cases of PSP meaning that a significant minority did not have this finding. One of the problems is that it is sometimes difficult

In order to understand what is seen on MRI scans during life we have been scanning post mortem brain samples to look at the appearance of key parts of the Figure 2 brain involved in PSP using ‘high field MRI’. What this has shown is that the brain can be described in exquisite detail using this technique and many small regions in the brain can be accurately identified. This is very important as some of these small structures are affected in PSP. We hope that by looking at these on MRI scans we can improve our ability to make a diagnosis. Using post mortem samples means

work was “ This presented at the

Association of British Neurologists meeting last year where it was awarded a runner-up prize in the poster presentations.”

which are not normally used when making a standard scan. Although recent research suggests that these new techniques might be able to pick up abnormalities before there is any change on the standard scan (such as a hummingbird silhouette), we have not yet been able to reproduce this in PSP when we chose which regions to look at ourselves. But, when we used computer software to compare the scans we were able to see not only which brain regions are affected in PSP (figure 3) but also Finally, we We are immensely have been grateful to all of those which connections in the brain are studying who participated in affected (figure 4). how new MRI The reason this is scanners can be the study and the important is that we used during life. work is just starting know from our first We are immensely to come to fruition.� study that standard grateful to all MRI scanning may of those who not be good enough in some cases participated in the study and the work and that there is a significant minority is just starting to come to fruition. Our of patients who actually have PSP but initial approach was to look at the brain no significant changes on a standard and measure how it is affected using MRI scan. It is hoped that by using these new, more powerful scanners and to newer types of MRI scanning we will be look at different ways of studying the able to make MRI more useful and even brain on MRI using some techniques we can scan tissue for long periods of time which helps us get much clearer images. We can also study the same tissue under the microscope to confirm that we are seeing what we think we are seeing. This is important work as increasingly MRI scanners with stronger magnets are starting to be used in hospitals across the country. It could also enable us to develop ways in which we can measure how severely the brain is affected by the disease process.



make an earlier diagnosis. There are reports in the published literature that this is now possible in PD and we hope that the same will one day apply to PSP, and other similar illnesses. However, there is still a long way to go to make this a useful test in routine clinical practice and it will be some time before it becomes generally available.

All of this work would not have been possible without the support of the PSP Association, the participation of those who volunteered for the MRI study (and particularly those who came and had a second 90 minute scan!) and those who were donors to the Queen Square Brain Bank. The technology of MRI is rapidly advancing and this work should contribute significantly to our knowledge of how both standard and more advanced MRI scanning techniques can be used for patients both now and in the future. I look forward to updating you on my progress.

Figure 3

Figure 4

Figure 1: The hummingbird sign in PSP Figure 2: High field 9.4T MRI scan image of the brain (upper) and using histology (lower) Figure 3: Regions where the brain is affected (blue) in PSP showing reduced volume Figure 4: Regions where the brain connections are affected (red) in PSP Follow us on Twitter @pspassociation

PSP Matters Summer 2011 19


CBD update

Dr Alex Gerhard, Dr Tobias Lagheinrich, Professor Julie Snowdon


t the Cerebral Function Unit often it takes a long time to diagnose it. (CFU, www.cerebralfunctionunit. With our study we want to improve ) and the Wolfson clinical diagnosis of CBD and the Molecular Imaging Centre, (WMIC, differentiation between related syndromes. Additionally we want to imagingfacilities ) in Manchester we are learn more about what causes apraxia in currently conducting a research project CBD with the help of brain imaging. that will help us to learn more about Using PET (Positron Emission apraxia in cortical basal Tomography) scanning we show degeneration (CBD) which parts of the brain show normal and also Alzheimer‘s metabolic activity and which are disease (AD). affected by the disease. We will The typical clinical combine this with sophisticated MR presentation of CBD is scanning that indicates how these that of a parkinsonian affected brain areas are connected. syndrome combined with asymmetric We also will be using a newly apraxia. developed detailed clinical assessment Apraxia is a deficiency in motor battery (a series of tests) to assess the control where the type and severity of With our study patient has difficulties apraxia. with simple or more Patients with apraxia we want to complex motor suffer from different improve clinical underlying diseases, acts despite intact sensation and power. diagnosis of CBD.” one of which can be Apraxia can become CBD. Currently it is evident in daily life, for example by the often difficult to come to a correct inability to perform acts like brushing diagnosis during a person’s lifetime as one’s teeth and is often very debilitating there is no definite diagnostic test. We for patients. hope to contribute to better lifetime One problem when doing research diagnosis by clarifying the exact type into cortical basal degeneration is that of apraxia which patients are suffering we do not have good clinical criteria from and comparing this to findings for the diagnosis of this disorder so that on brain imaging. Currently, only

20 PSP Matters Summer 2011

symptomatic therapy is available and this is not specific to the underlying disease, but in the future therapies are likely to be directed to the underlying cause. Therefore correct diagnosis is becoming increasingly important. If you want to learn more about our research please contact us through: Cerebral Function Unit Greater Manchester Neuroscience Centre Salford Royal NHS Foundation Trust, Salford M6 8HD Telephone 0161 206 2561 Fax 0161 206 0388 Email

Facts about CBD CBD stands for cortico basal degeneration. Changes in the brain lead to loss of neurons, which in turn lead to the symptoms experienced. The areas where the changes occur vary but include areas of the cortex (outer area of the brain) particularly the superior parietal and frontal lobes. Changes also occur in areas of the subcortex (deeper areas of the brain,) including mainly the basal ganglia. People living with CBD often have similar symptoms to those who have PSP, such as difficulty with movement and balance, and eye problems resulting in falls. However people with CBD usually have a one sided weakness rather than weakness on both sides as in PSP. They also commonly have problems with everyday tasks such as dressing, cooking and eating so assessment and support from the occupational therapist is particularly important. They can also have difficulty with memory and thought. In some cases these problems can be more evident and problematic than the movement problems, and support from the community psychiatric nurse is very important.


Letters from Readers Elise Garland writes: Dear Readers,

Lesley, Clare, Bea, Katy, Alice and Jomar Alex one of the health care staff looking after Heather

A Mother’s Day in hospital for Heather Heather Edmondson, who has PSP, celebrated Mother’s Day in St Helier Hospital with her three daughters, Lesley, Clare and Bea and two of her granddaughters, Katy and Alice. When we arrived dressed in PSP T-shirts and surprised her with the banner, Heather’s delight was obvious and despite the paint still being slightly wet the only suggestion for improvement was: “The flowers should have been magnolias, girls!” After opening cards, emails from other members of the family and messages on the forum, Heather spent the afternoon laughing and having fun with the family and staff members. Disappointingly no champagne was opened. Heather would like to say a big thank you to the staff on Mary Moore Ward at St Helier, Hospital, Carshalton for the care and patience they have shown towards her and the time taken to understand the different difficulties and complications she is facing as a PSP patient.  Heather has been living with PSP for approximately seven years and is now in the latter stages of the disease. She has been an avid contributor to the forum and though now unable to use her laptop often asks her family to log onto the forum and give her updates on the carers, sufferers and friends that she has made from the site. Please keep sending your messages via the forum to Heather. It really does make a difference. html Follow us on Twitter @pspassociation

There is a cookbook called’The Dysphagia Cookbook by Elaine Achilles which gives you menus that are suitable for patients who have problems swallowing. Papaya is good apparently and try to avoid too many dairy products, (but of course they do need some) and pineapple juice is supposed to help with mucus as well. Towards the end of my husband’s life I fed him using a syringe because he wouldn’t open his mouth easily. We used Thick-n-easy which we got on prescription for thickening drinks. He decided that he wasn’t going to have a PEG fitted as it would prolong his life which he didn’t want to do. But one thing that I would say to you all is to talk about everything you want to talk about early and say the important things that you want to say to your loved one before the speech goes completely. Dave could not talk at all for the last few months of his life and that is very difficult for both of you. Even though you have said the things you need to say to your loved one, you still of course want to say more but I am afraid though that it doesn’t always happen. Elise Garland The Dysphagia Cookbook, in paperback, at a cost of £11.99 excluding postage can be purchased from amongst other soft food option cookbooks. Editors Note: PSP is a very individual disease and the rate of progression of symptoms varies considerably from person to person.


Congratulations to Rebecca Benney, our Information Manager, and her husband Warren on the birth of their daughter (and sister for Sean) Megan Constance Benney, born 22nd February 2011 weighing 8lbs 1oz.

We would love to hear from you. Please write to us and tell us what is happening in your area. Send your letters to the Editor at PSP House, 167 Watling Street West, Towcester, Northants NN12 6BX or email to

PSP Matters Summer 2011 21


Virgin London Marathon 2011 and adidas

Virgin London Marathon


here was a fantastic atmosphere at the 31st London Marathon, held a week before Easter with nearly 37,000 entrants. Following the start of the Elite Women’s race and the Wheelchair Marathon, the mass start commenced at 9.45 from three different start points in Greenwich Park. For some runners crossing the start line was a sluggish process, taking over 25 minutes, as there were so many participants. With PSP supporters around the course, our PSP runners enjoyed a fantastic day. Our team of over 60 runners was tremendous and

22 PSP Matters Summer 2011

sister teams who had each lost their father to PSP in the last 12 months, so well done to them for their remarkable commitment. The heat of the day took its toll on a number of our runners, we had St John’s Ambulance attend two of our runners who ‘overheated’ and just needed checking over before they left central London. With comments of being ‘a little tired’ and ‘a bit warm’ our first runner to cross the finish line in an amazing 3 hours 1 minute 22 sec was Marco, and later we met Bekah, Sam and Mary-Frances who all took around seven hours to complete their first marathons, CONGRATULATIONS to all! Amongst the massed runners on the day was a vast array of fancy dress characters, some of which you may have seen in the television coverage. William and Kate lookalikes ran in full wedding attire proving popular with spectators, included new runners who have never and Katrina and Andrew broke their experienced a marathon before along run in Canary Wharf long enough to with the more experienced including get married before rejoining the other Beccy who has now completed nine runners to complete the marathon. marathons for PSP and Darren, another There was a running red London bus, long term runner who has now run Joey the mechanical horse from the eight. This year stage play warhorse and Darren donned an a plenty. Darren donned an superheroes Astronaut outfit One entrant became the Astronaut outfit first person ever to dance trying for the Guinness World the whole 26.2 miles, trying for the Record of ‘fastest and you may remember Guinness World the deep sea diver who marathon runner dressed as an Record of ‘fastest took a week to complete astronaut’ which marathon runner the course a couple of we are pleased to years ago, well this year dressed as an report he achieved that same ‘runner’, Lloyd in under four hours, Scott, dressed as Brian astronaut.” Darren’s record the snail from the Magic certificate proves Roundabout, is taking his success. One of the conditions nearly a month to complete the course was that Darren had to wear his space this year! helmet for the whole run, a challenge in Our brand new Antoni and Alison the high temperatures on the day. Well designer T-shirts were seen for the first done Darren! We had two brother and time on marathon day and caused a real

Silverstone Half Marathon stir. With PSP staff wearing the ‘Please support PSP’ design, the ‘I Hate PSP’ version was also well received creating a dramatic talking point; both designs are now available from the PSP shop. We would like to thank all our runners who took part and our volunteers who cheerfully and loudly supported our runners around the course. Our thanks also go to Clive Goodyear and Sharon for providing massage for our runners and to Jon Squirrell and his team from the Vault gym in London for creating awareness at the after marathon stretchdown sessions held at the finish line for all tired runners, a service really well received! Finally it was great to see our PSP runners at the post race reception held at the ABPI offices on Whitehall, courtesy of Mike Baker, a fantastic facility that is greatly appreciated by all.

Chris Gloster*

Silverstone Half Marathon

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Nick Guyatt* PSP Matters Summer 2011 23

*Photographs by kind permission of James Rudd,

And so we speedily progress to the 2012 London Marathon. As it’s the year of the London Olympics, we are very lucky and honoured that our 2012 team is being supported by Seb Coe, Vice-President of our charity; Seb will be involved with the team through the year. We are now releasing guaranteed places to those who commit to raising £2012 for 2012, giving almost a year in which to fundraise for our charity. To register and guarantee your place in our 2012 team, please contact Alan by email marathon@ or by phone on 01327 322419.

An intrepid group of PSP runners took part in the adidas Silverstone half marathon on a chilly Sunday morning in March, six weeks before marathon day. Proudly wearing their PSP vests, it was great to meet them and cheer them on amongst a field of nearly 7,000 runners. Using the event as a training run and part of their marathon training programme, our runners enjoyed the challenge of running three circuits of the Silverstone race track, the first lap starting from the pit lane then past the famous Grand Prix names including Becketts, Stowe and Club corners ending at the chequered flag. WELL DONE to our Silverstone runners.

Fundraising Marathon virgin Keith headed to London with a £2,000 incentive for his favourite local charity.


arathon virgin Keith Bird, from fellow Business Alliance Group member ACS, headed to London with a £2,000 incentive for his favourite local charity. A self confessed ‘non-athlete’, Keith was inspired to run this year’s London Marathon because he decided he needed to lose weight and get fit. Keith, 37, a Service Manager with ACS, decided drastic action was needed and signed up for a 26-mile run, despite not having done any keep fit for nearly 20 years. Keith decided to raise money for his locally-based charity, the PSP Association, and hopes to have raised over £2,000 from sponsorship. Keith said: “Before I started training for the marathon, I’d done no exercise

Keith at the end of the MK Half Marathon 2011

for over 17 years. I gave up smoking just over three years ago, but I put quite a bit of weight on. I wanted to set myself a really big challenge, and at the same time, give something to charity. So, I chose the PSP Association, a fantastic local charity, and they’ve been kind enough to secure me a place in the Marathon. In return, I am looking forward to being able to hand over a big cheque to them through people sponsoring me.

“I’ve been in training since last year and have had some great advice from colleagues at ACS who’ve run marathons themselves. I’m actually really looking forward to the big day. It will be such a thrill to do it, and a sense of achievement to complete it. “The PSP Association is a Northamptonshire Chamber Business Alliance Partner, alongside ACS, and has given me great support. This is very much a local fundraising effort, and we’re asking everyone we know to dig deep and support me to smash the fund raising target.” ACS has a long history of supporting local charities through running and sporting events. From the Cranfield University 5K run, to last year’s BUPA Great North Run, ACS employees are always challenging themselves and raising money for worthy causes. You can follow Keith’s progress at http://  and we would appreciate any support you can give for the fund raising effort at keith-bird

Update on Awareness Week


uring this year’s Awareness Week we launched ‘3 for PSP’ - a new initiative to raise funds for the three main areas of research: identifying causes, developing effective treatments and finding a cure. Hundreds of you across the country have taken part in 3 for PSP and thousands of pounds have been invested in the search for a cure. This will help re-launch our research campaign and gather strength to focus on finding the causes, treatments and eventual cure for PSP and CBD. But ‘3 for PSP’ is not over yet... and you can still help out, not only by highlighting the need for more research into PSP and CBD, but also by raising the vital funds needed to make it happen. 24 PSP Matters Summer 2011

You can do three things in ‘3 for PSP’ this year; how about... 1. Run a three-mile 3-legged-race

1. Donate £3, £30 or £300

1. Hold a ‘3 for PSP’ car boot sale – all items £3

2. Cycle to work for 3 weeks

2. Persuade three people to join us as members

2. Ask three friends for donations instead of birthday presents

3. Take three minutes to consider us in your will

3. Invite 30 people to a ‘3 for PSP’ coffee morning

3. Trek the UK 3 Peaks Challenge; three countries, three mountains, 24 hours!


Every penny you raise from taking part in ‘3 for PSP’ will help us work towards a world free of PSP and CBD and every person you involve will continue to raise awareness. for Please remember, whether you decide to take part in an 1. Cause 2. Treatment event or organise your own, we’re here to help. Just call us 3. Cure on 01327 356131 or email and tell us what you’re up to!


Membership Changes for 2011!


PSP T-Shirts We are delighted to unveil a new set of PSP T-shirts, designed by London design duo Antoni and Alison. Antoni and Alison have been long term supporters of the Association, and when we approached them to design our new t-shirts they were more than happy to help! Our new style T-Shirts will be on sale from the PSP shop for £20, but if you choose to fundraise for the Association you will receive a complimentary Antoni and Alison T-shirt to help raise awareness of PSP.

PSP Notelets

Family and friends may want to join as members as a way of showing those Follow us on Twitter @pspassociation

! ew N

directly affected that they care - the hanges to membership means more support we have the more we are that anyone with PSP, their able to achieve! carers, spouses/partners are To complement this new initiative entitled to free membership together we have re launched PSP Matters. I with all the benefits offered by PSPA. hope you enjoy this first edition of your This includes all printed information, new look membership magazine. It still telephone support via a PSP Nurse contains all the useful information on specialist, access to the online forum, and information on support groups and living with PSP and what’s happening in research as well as features and meetings locally and nationally. inspirational stories written by people We have also lowered the affected by PSP, which will give hope membership fee for general and positivity to others. membership in the hope we can If you are interested increase the We have also in fundraising, the new number of people look PSP Matters also who support us. lowered the has up to date news on Membership is now fee for general who’s raising funds and only £10 per year. As membership...” how, together with a a member you will exciting range receive three editions of things that you can do and get per year of PSP Matters together with involved in. updates on the charity and events Your support is so important to us and across the UK. we hope the changes to membership We hope this new initiative will will encourage you to keep in touch increase the numbers of people who and continue to support us. are in touch with us. In fact, from If you are not a member but would January to March membership numbers increased by 175 and continue to rise as like to join please complete the form on the back page or call 01327 322415. PSP Matters goes in to print! Help us work towards a world One of the main reasons for this free of PSP. change is that we want to make sure that every single person living with PSP has access to relevant and up-to-date information, help, advice and support that is so vital for continued quality of life. By removing the fee we hope this will encourage more people with PSP to get in touch and access all of our services. We also need to have a much bigger voice and hope that lowering the cost of membership will result in more members. Even when the help from PSPA is no longer needed, we 5 Magnolia cards with envelopes hope people will want to continue as £5.00 per pack members and help us help others.

Featuring the winning painting by Peggy Ritter PSP Matters Summer 2011 25


A lasting tribute to Bob

Bob with his wife, Wendy

When Bob Keeler lost his fight with PSP, his family decided to celebrate his life by opening a Tribute Fund, which also meant that they could support the PSPA and others affected by the disease.


he Bob Keeler Tribute Fund was set up on 20 May 2010, the day after Bob’s death, and over this time the family has raised over £3000 in his memory, all of which will be used to help the charity continue the vital work we undertake. Bob’s family, including his wife Wendy and daughters Nicola and Sally, together with his many friends contribute to the Tribute Fund via the website, an opportunity that enables individuals to remember a loved one by setting up an online tribute fund. The site is fully interactive and has many features including a memorial garden, pictures even music can also be uploaded by family and friends, as well as donations made to the charity you wish to support. 26 PSP Matters Summer 2011

Sadly, Bob passed away on 19 May Wendy, Bob’s wife said, ‘Bob certainly 2010, at his home surrounded by his lived his life to the full until he was family. diagnosed with Parkinson’s disease in Bob’s daughter Nicola Turnbull told 2001. He was determined he would us a bit about her dad. “After qualifying fight this and wouldn’t let it stop in electrical engineering in 1954, dad him from doing the things he loved developed a best. Sadly though, a few years later Bob He was determined passion for racing and was also diagnosed he would fight this motorcycles riding a Norton. In with progressive and wouldn’t let fact he won the supranuclear palsy Isle of Man TT in (PSP)’. it stop him from 1954, but a serious Wendy cared for doing the things he accident soon after Bob for as long as was loved best.” put an end to his humanly possible and racing. Instead, he her dedication is to be went into motorcycle retailing and was applauded. assisted by his racing sponsor, John ‘Bob fought this illness with great courage and dignity until the end, never Vicars. Bob eventually had shops in Wembley, Eastcote, Greenford, Harrow, once complaining,” said Wendy.

“Before setting the fund up I talked remembering a loved one or friend Hayes, Hillingdon and Southall. it over with my family who all agreed whilst also raising funds for the work “Bob met mum in 1954. She worked it would be a great way to keep Dad’s of the PSPA. Since Tribute funds were as a hairdresser a few doors away from memory alive. His grandchildren also introduced, over £100,000 has been one of Bob’s shops. He ‘enquired who have something to remind them of raised as a direct result. This has enabled she was’ and as the saying goes, ‘the rest what fun he was, which is great. It us to continue supporting many is history’.” brings a great deal of comfort to all thousands of people with PSP, their Bob and Wendy had three children, the family when we read thoughts families and carers, and also fund vital Sally, Robert and Nicola. Sadly, Robert from friends, and research to find a cure. died in 1981 at look at photos on Once a Tribute Fund has reached the age of 19 from ...I talked it over the site.  Even friends £2,500 we will ’Dedicate a Tree’ in a leukaemia. who have never met Woodland with my family Bob had a Dad have said what a Trust Reserve in passion for classic who all agreed it beautiful tribute it is memory of the cars and had a would be a great and what a wonderful, person named great collection. in the fund He owned a Rollsway to keep Dad’s adventurous man he was.  This has brought and you will Royce Silver Ghost, a memory alive.” us all great comfort receive a special certificate marking the Blower Bentley and knowing people think occasion. a beautiful 8 Litre of him in this way. My whole family was You can set up a Tribute Fund using Bentley, to name but a few. Bob and devastated by this illness and wanted or if you don’t Wendy became members of the Bentley to raise as much money as possible. have access to the web you can open Drivers Club and toured the world in Having this tribute online allows us one up via PSPA. Once it’s set up we’ll the beloved 8 Litre Bentley. There were to do this and also raise money for keep you informed of how much is in many classic rallies to Russia, Turkey, the vital work undertaken by the PSP the fund and update you on how the South Africa and Morocco. Bob and Association.” money is being used. Wendy also completed a trip driving In February this year Nicola and her If you would like to set up a Tribute from London to Peking in a Range Rover Fund please contact Lis Nunn, Tribute over a two month period. They travelled husband organized a Memorial sailing race for Bob in Dubai to raise awareness and Legacy Officer on 01327 356132 or to places such as Cannes, Gobi Desert, and funds for the PSP Association. “We at USA and New Zealand in some of the have a boat here in various classic cars Bob owned. Dubai and thought Nicola explains why the family opened a Tribute Fund for Bob and how it would be a good idea to organize the funds are raised: “The reason I set up the Tribute Fund for this event as my husband and I are my Dad was that I wanted to celebrate keen sailors,” said his life and share with everyone how Nicola. “It went so immensely proud my family and I are of well that it will be him and what he managed to achieve an annual event during his lifetime, in a way that would and with dad also last for years.  A Tribute Fund and the website provided being a keen sailor it makes it even that opportunity. Setting one up was more special!” like a personal gift to my Dad.  I set it Tribute Funds up the day after he died and it gave are a great and me a focus, and helped keep me going lasting way of through those darkest days. Bob with his grandchildren, Emma, Kelly, Chelsey, Robert and Luke

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PSP Matters Summer 2011 27

Your Events Cycle shore to shore for PSP


ubliner Jim Gilmartin took on the challenge of a lifetime when he cycled from Mizen Head at the most southerly point of Ireland in County Cork to the most northerly point at Malin Head in County Donegal, covering 525 miles in six days to raise money for those living with PSP. Jim took on the challenge in honour of his mother, Patricia who was diagnosed with PSP in 2009. With the intention of making the route as interesting and scenic as possible, hence a little longer, Jim’s ride took him over some of the best climbs in Kerry and on the last day of the ride, over the gap of Mamore, reputedly the

most difficult climb in Ireland. Jim tells his story... “After much preparation for the ride, I decided that less care was needed for my luggage and other than food, my bag contained: 1 T-shirt, 1 pair of shorts, and flip-flops. That’s it! Oh yeah, and a toothbrush. Travelling light, I set off from Mizen Head in the morning with some trepidation, but this was quickly dispelled, as it is impossible to travel through Ireland without being awe struck by its beauty and the mountains and valleys definitely distracted me from my growing fatigue. The final day was welcomed and after one or two more hard climbs, Malin Head was conquered and we were off for a well deserved pint of Guinness and some good food.” If you want to cycle shore to shore for PSP; be it Mizen to Malin, Lands End to John O’Groats or the Cumbria - Northumberland Coast to Coast, simply contact the Fundraising Team on 01327 356131 or email

PSP cycle team are ‘WellHeald’! Congratulations to Heald Solicitors who have completed their second ExtraMile Cycle Challenge for PSP! The team, aptly named ‘WellHeald’ have chosen to support the PSP Association after acting as our charity’s solicitors for a number of years. The cycle challenge took them across three countries and 500 miles of cycling through Belgium, France and Germany, and despite the torrential rain the challenge was hailed a great success, raising almost £1,400 for PSP! If you would like to take part in an 28 PSP Matters Summer 2011

Extra Mile Cycle Challenge, please contact the Fundraising Team on 01327 356131 or email

Round the world for PSP When Matt Cornall’s grandmother passed away after living with PSP for several years, Matt knew he would have to do something pretty special to honour her memory, and when he came across the Clipper Round the World Yacht Race, Matt knew this was the very thing. “The opportunity became available in both my personal and work life, allowing me to ‘escape’ for a few months,” says Matt. “This has always been something that I wanted to do and luckily when I contacted Clipper they were pleased to welcome me on board!” Matt will be sailing legs 5 & 6 of the world challenge which will take him from Eastern Australia to the West Coast of the United States and will last from January 2012 until early April. The crew will experience all extremes of sailing: the heat of a southern hemisphere summer, up to the tropics and back across the Equator before continuing north through the South China Sea. Here the weather will turn colder with strong head winds and powerful undercurrents that will deliver a real sailing challenge, testing the crew until they finally head out past Japan and across the Pacific Ocean, sailing 33 days straight across open seas until their lookout spies the hills of California. Like many of the crew on the Round the World trip, Matt started with no knowledge of sailing, but will finish as an experienced and accomplished sailor. It’s not easy and only those with a firm desire to live life to the full apply. For Matt, this is a fitting tribute to his grandmother, and one which would do her proud.

Upcoming Events British 10K London Run When: 11 July

Great South Run: When: 30 October

Registration fee: £20

Registration Fee: £15 Sponsorship Pledge: £180

Sponsorship target: £275

If you’re not a regular runner but fancy a challenge, then the British 10K London Run is the perfect race for you! For anyone who is just getting into the sport, this manageable route offers some stunning scenery as you run through the streets of London - starting at Hyde Park Corner, and continuing through Trafalgar Square and past St Paul’s Cathedral, before a triumphant finish in Westminster!

Starting in Portsmouth city centre and finishing on the seafront, the BUPA Great South Run follows a 10 mile route around the city, passing the historic dockyard at Victory Gate. This is a classic race for those wanting to step up the challenge from a 10K, but are not yet ready for a half marathon, and we have a number of guaranteed places to offer to our willing runners!

Cycle Glasgow to Edinburgh

Trek Machu Picchu

When: 11 September Sponsorship pledge: As much as you like! Choose from the classic 51-mile or the extended 100-mile route from Glasgow to Edinburgh as you follow some quiet country lanes and cycle paths through stunning scenery as you pedal along for PSP. With rest stops every ten miles, a lunch served at the beautiful Linlithgow Palace and entertainment and activities once you reach Victoria Park in Edinburgh, this ride makes for a great active day out for a big group of family and friends!

When: 10 – 19 May 2012 Registration fee: £299

Sponsorship pledge: £3,000 Sign up for this once-in-a-lifetime trek in the Peruvian Andes, to traverse desert plateaus and tropical rainforest to reach Machu Picchu; the ‘Lost City of the Incas’. As one of the top ten trekking routes on Earth, the classic Inca Trail encompasses three high mountain passes and is certainly a challenge to take your breath away!

Royal Parks Half Marathon: When: 10 October Registration fee: £30 Sponsorship Pledge: £360 With a fantastic festival atmosphere, live bands and entertainment for spectators, this is not only a great race in beautiful surroundings but is also a lovely day By far the best race out for all the family! I’ve ever done, The route itself shows and what a great off London’s sights beautifully, as you pass reception from the the key landmarks of PSP Team back in Big Ben, Buckingham Palace and the London Hyde Park!” Eye. Craig Harvey, 26,

Royal Parks Half Marathon 2010

For further details on how you can raise funds for PSP, please contact the Fundraising Team on 01327 356131 or email and for more exciting fundraising ideas visit our website PSP Matters Summer 2011 29

Support Groups

Below are the dates of our next series of Support Group Meetings for your diary, which you all are welcome to attend. For more information please contact Deborah Wheeler on 01327 322415 or

Support Group Meetings Group


Date & Time


PSP House, Towcester

Wed 8 June 2011, 10.30


The National Hospital For Neurology, Queens Square

Mon 13 June 2011, 11.00

South West

Sue Woolnough’s Home, Henbury, Bristol

Tues 14 June 2011, 13.30

North West

St Luke’s Hospice, Holmes Chapel/Crewe

Wed 22 June 2011, 13.30

South West

Longdown Village Hall, Longdown, Exeter

Fri 24 June 2011, 11.00

North West

St Johns Hospice, Lancaster

Fri 24 June 2011, 13.00


Social Hall, Bedhampton Road, Bedhampton

Tues 28 June 2011, 10.30


Ty George Thomas Hospice Care, Whitchurch, Cardiff

Fri 1 July 2011, 11.00

South West

Leckhampton Court Hospice, Cheltenham

Tues 5 July 2011, 11.00


Corrina Lodge, Camberley

Tues 5 July 2011, 10.30

South West

Joseph Weld House, Dorchester Hospice, Dorchester

Thurs 7 July 2011, 11.00

East Midlands

Age Concern Senior Citizen’s Centre, Earl Shilton

Thurs 7 July 2011, 13.30


Greathed Manor Care Home, Lingfield

Tues 12 July 2011, 10.30


Garden House Hospice, Letchworth Garden City

Wed 13 July 2011, 11.00


Barnsley Hospice, Gawber, Barnsley    

Wed 13 July 2011, 10.30


Burnby Hall Room, Pocklington          

Fri 15 July 2011, 10.00

South West  

Echo Centre, Barras Place, Liskeard     

Mon 18 July 2011, 11.30

30 PSP Matters Summer 2011

Supporting people at local level – can you help?



s part of our commitment to of contact for people with PSP, their Main supporting everyone living with carers and families, and who is happy to Telephone: 01327 322410 PSP we have decided to make full coordinate and oversee the setting up Facsimile: 01327 322412 use of the many offers of help we receive and running of a support group. The E-mail: from people who want to do something amount of time you need to give will Website: in their own local area – whether it be be dependent on the need locally. For fundraising, campaigning, or providing example how many people with PSP are Support: help and guidance to people with PSP, in your area, how many are interested Debra Chand, Director of Care and their families and carers. With so much in coming along to a support meeting, Support: 01327 322414 enthusiasm, just think what a difference and how frequently would that group this could make to the lives of people like to meet up? We will support you with PSP. all the way, making Deborah Wheeler, Care and Recently we have been Support Manager: 01327 322415 ...just think what sure you receive full looking at ways to training and guidance a difference improve the help we before you begin to offer locally - in particular Nurses: this could make set up a group, and through support groups helping you with Katie Rigg, Scotland, Northeast to the lives of and volunteer led visiting venues, speakers England and Cumbria: schemes, both of which people with PSP.” and contact with 01434 382564 provide opportunities for prospective support us to harness the support of volunteers. group attendees. You will also receive Kat Haines, Northwest England, Currently, we have 90 support group expenses so you won’t be out of pocket. N. Wales, N. Ireland and Ireland: meetings a year in 34 locations. This You may be a past carer of a relative, or 01995 601533 isn’t enough and means that the time you may know someone who is affected between meetings can be up to 4 by PSP and want to do something months and in some cases many people Jill Lyons, Southwest England and positive to help them and others. are excluded because of the distance S. Wales: 01934 842366 The key skills you’ll need to have are: from home to their nearest group. enthusiasm, a ‘can do’ attitude, a friendly We would love to have more frequent and approachable manner, and most Samantha Pavey, Southeast meetings in more locations so that not Importantly the desire to make a real England, East Anglia and London: only do people have more opportunities difference to the lives of people with PSP. 01747 841461 to meet, but also the support group is If setting up a local group is something located ideally no more than 25 miles that appeals to you, please get in touch from where they live. However the with Deborah Wheeler on 01327 322415. cost involved in staffing this would be massive, and as a small Charity we simply just cannot afford to do it. This is why we need volunteers! We feel that we could increase the An interactive study day event focusing on ‘Neurological Conditions from frequency and number of groups a Service User and Carers Perspective’ took place at St Martins College, across the UK, if we were to put the the University of Cumbria’s Lancaster campus on 21 March. The day was organisation of them into your hands. well attended by nearly 200 nursing and occupational therapy students After all, you know what living with PSP who heard talks and presentations from a number of charities including is about and what people want from a the PSP Association, MND Association, MS Society and Parkinson’s UK. support group. Kat Haines, PSP Nurse Specialist for the North West and Ireland, gave a So what would it involve? Well, that presentation on ’The Collaborative Role of the PSP Nurse Specialist’. Kat depends entirely on what you are willing was accompanied by Ann Rose, an Occupational Therapist, who gave a to offer! Basically we are looking for moving account regarding her role as carer for her mother who has PSP. someone who will be the local point

Interactive study day

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PSP Matters Summer 2011 31

Join us today - become a member Help us work towards a world free of PSP

Membership includes:

There are four individual membership options: 1. 2. 3. 4.

For people living with PSP there is no fee For carers, spouses and partners of people with PSP there is no fee Individual membership is £10.00 Life membership is £250.00

Overseas membership to people with PSP and carers/spouse/partner is free.

Membership application form Please complete the name of the person holding the membership using BLOCK CAPITALS Name of person who will hold the membership I have or care for someone with PSP Surname Forename(s)

• A welcome pack. • Three editions a year of our membership magazine PSP Matters, containing updates on care, and the latest research, as well as practical advice on living with PSP. • Invitations to patients and carers events, information on fundraising events and initiatives - locally and nationally. • Carers’ Information Pack (if you have PSP or are a Carer).

You can also join by telephone on 01327 322415

Additional information To help us to continue to develop the services we provide to people with PSP we may write to you from time to time asking for your feedback and views. You will also receive PSP Matters, the membership magazine, three times a year. Please tick the following boxes as appropriate: I do not wish to be contacted I do not want to receive PSP Matters All personal data will remain within the PSP Association and will not be shared with any other organisations or individuals.

Title (Mr/Mrs/Ms/Mr & Mrs/other) Address

How do I pay? Postcode

Telephone Email

You can pay your membership by cheque, credit or debit card. Some people also like to make a donation to The PSP Association for which we are always grateful. : My subscription amount is: £ : I would like to make a donation £ I wish to pay by cheque (made payable to The PSP Association)

It would be useful to have a date of birth (optional)

Credit/Debit card Please indicate the membership you would like (full details of which are shown on opposite page)

Individual membership No fee

Carer, spouse or partner of person with PSP

No fee

Individual membership

£10 PA

Life membership


Overseas membership for people with PSP and carers/spouse/partner is free

No fee

If taking up Carers’ membership please tell us the name of the person you are caring for



Other (please state)


Maestro/Switch Issue No

Person living with PSP

My relationship is (tick box):

Mastercard Card Number


(shaded boxes required for Maestro/Switch only)

Valid from




For security reasons please write the last 3 unique numbers printed on the reverse of your card. Cardholder’s name Cardholder’s billing address Postcode



I would like the PSP Association to reclaim the tax on this subscription and any donation I have made in the four years prior to this year and any donations I may make in the future from the date of this declaration until I notify you otherwise. I am a UK taxpayer. I am paying at least as much in income and/or capital gains tax each year as The PSP Association reclaims on my donations Date______________ I am already signed up to Gift Aid with The PSP Association

I am not a UK taxpayer

Please return your completed form to: The PSP Association, 167 Watling Street West, Towcester, Northants NN12 6BX.

PSP Matters Summer 2011- issue 51

PSP Matters - issue 51  

Journal of the PSP Association

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