Autumn 2015 edition - chesterparkinsons
Transcription
Autumn 2015 edition - chesterparkinsons
TELEPHONE CONTACTS Colin Cheesman (Chair) ` 01244 678866 [email protected] Ann Edwards (Secretary) 01244 520757 [email protected] David Stoddart (Vice Chair) 01244 316534 Pam Adams (Member’s Liaison Officer) Sue Woods (Nurse Specialist) Western Cheshire 01244 376546 [email protected] 0151-350-3327 Mirain Allen (Nurse Specialist) 01352 803593 Flintshire Rachael Millington (LPA) Chester & Western Cheshire 0344 225 3658 Sara Owen (LPA) Flintshire 0344 225 3719 David Mundy Branch Volunteer Research Liaison Officer 01829 270090 [email protected] Helen Dymond [email protected] Contact Helen if you have any items to be included in the Parkinson Post Please contact Pam Adams [01244 376546] for details of and general enquiries about Social Events and the future programme. Where reservations and/or menu choices are required in advance, please use the booking forms provided. PARKINSON’S POST CHESTER & DISTRICT BRANCH AUTUMN 2015 You will recently have had the opportunity to vote in the elections for Trustees from England to fill two vacancies. One of those vacancies was the seat from which I have retired last nine years, having completed nine years as a Trustee – the maximum time allowed. It has been an amazing and life changing experience for me. Following a diagnosis of Parkinson’s at a relatively young age of 54, I was lucky enough to be able to retire and combining my developing understanding of Parkinson’s with my working experience, I developed what can only be described as a second career in the voluntary sector, and which has carried me through the last 15 years. I say ‘carried me through’ deliberately, because whether by good luck or good judgment, it has undoubtedly been hugely beneficial therapy for me and one of the key factors in keeping my condition manageable. The work of a Trustee can certainly be demanding – both physically and mentally, but keeping physically fit and mentally alert are both essential ingredients to a good quality of life. Work as a Trustee certainly compels you to do both and I am sure that discipline has been an important part of my life with Parkinson’s. Will I miss it? I will certainly not miss catching the 6.26am train to London on a dark winter’s morning. On the other hand being a Trustee has taken me all over the British Isles and beyond. I have trekked in the Sahara, attended the World Parkinson Congress in Montreal and made friends in Australia. Since my diagnosis, life has been different from anything I could have imagined – but so far it has not necessarily been worse. The big learning for me has been the discovery that a diagnosis of Parkinson’s is far from being the end of the world. Of course, it’s not easy, but if you are determined enough to keep on top of Parkinson’s rather than allow it to be in control, your quality of life will not suffer. If being a Trustee is such a good experience, you might ask whether I regret having to stand down. The rules which limit the length of time that a Trustee can serve are really important in ensuring the flow of new blood and new ideas to the charity. For the individual too, after a time, there’s a danger that one’s initial enthusiasm for making a contribution can get blunted and simply turn into habit. It’s healthy for any organisation that there is a steady turnover of members. That is equally true locally for our local Branch. The health of the branch depends, in the same way, on people being willing to come forward and take a share in running our activities, not to mention the work that goes on behind the scenes. We have a great committee, but there always more to be done and we need to be confident that there will be enough people to carry our initiatives forward into the future. Colin Cheesman, Branch Chair. Speech and language therapy is often underrated in its significance for people with Parkinson’s. The loss of tone and volume and the increasing rigidity of the facial muscles combined with a loss of expression can cause the most severe communication problems. In very extreme cases it can cause swallowing problems making eating and swallowing medication very difficult. The Centre is developing good relationships with the SLT team at the Countess of Chester Hospital. Jo Prichard and her colleague, Emma Petherham, Speech and Language Therapists based there, have agreed to give a presentation on the service, what it can do for people with Parkinson’s and how to access it. Kit Clewley, Speech and Language Therapist from the Betwsi Cadwaladr Local Health Board is also going to be there, so we will be able to get a view on the services from across the Cheshire and Flintshire patch. The session will be held on Friday 23 October at 3.00pm at the Neuro Therapy Centre. Refreshments will be available from 3.00pm. Movers Shakers CHOIR NEWS!! Choir restarted on Friday September 18th and we are already rehearsing for our Christmas programme!! DO come and join us if you can – 1-3pm on Fridays at the Neuro Therapy Centre As well as singing at the Christmas lunch, we are joining the Chester Bach Singers for their Carols by Candlelight at St. Mary’s without- the -Walls Church in Handbridge!! What an amazing experience that will be!! Saturday 19th December – 730pm Try and come!! Their chosen charity for the collection at this concert is the Neuro Therapy Centre!! HELP US KEEP OUR RECORDS UP TO DATE – AND SAVE COSTS Please let us know if circumstances have changed by completing the form below. Please cut it out and send it to the address below. No stamp needed. FREEPOST RTKR-ZYRC-ZUBZ Parkinson’s UK C1-C5 Brymau One Trading Estate River Lane Saltney CH4 8RG ----------------------------------------------------------------------------------Please tick relevant box Name: ……………………..........................................................… no longer lives at this address no longer wishes to receive the Post is deceased would like to receive the Post at the following address (insert new address) ............................................................................................................... ............................................................................................................... GOING INTO HOSPITAL? If you know you are going to be admitted to Hospital for elective treatment or are unfortunate to be admitted as an emergency? Please remember to take all your Medication with you along with a list of all the tablets you are taking for your Parkinson's and any other medical problems you may have. ( maybe a relative or friend could help you with this) This will help the Medical and Nursing Team understand your personal requirements on admission and the need to have your Medication on Time during your stay. The Branch has a supply of Parkinson's Wash Bags available for People with Parkinson's going into Hospital. Please ring Pam Adams, Member’s Liaison, on 01244 376546 or email [email protected] prior to your admission if you would find a Wash Bag useful. Telephone Befriending Update Hello, my name is Mel Stevens and I have been with Chester Branch Committee since earlier this year. I am the lead in the development of our forthcoming new support service Telephone Befriending. We recently sent out a leaflet to all our members asking about your interest in this service. This is a little reminder to ask if you haven`t already sent back your completed survey and wish to do so, with the opportunity to add comments, then please can you forward it in the Freepost envelope provided. Thank you. Christmas Cards! If any of you haven’t bought your cards yet – there are Parkinson’s cards for sale at the Wesley Centre in St. John’s Street, Chester from mid-October to mid-December Monday- Saturday 10am – 4pm This message comes on behalf of Cards for Good Causes Research News Reviewing Grant Applications An important part of the work of Parkinson’s UK is to provide grant aid to support research into the Parkinson’s condition. To ensure that only the best quality research is funded, every grant application received is subject to a rigorous review process. Fundamental to this process is the belief that both the ‘lay’ and the ‘peer’ perspectives are important, so every grant application is reviewed by both scientific ‘peers’ (or experts in the field) and people affected by Parkinson’s. ‘Lay grant reviewers’ are people with a personal knowledge of Parkinson’s who volunteer to review grant applications. They receive copies of applications, each including a plain English summary of the proposed project, and give feedback as to which they feel are of the highest priority for people with Parkinson’s, and therefore which should be funded. This feedback is based on their personal experience plus a good measure of common sense and may well highlight issues not identified by their scientific ‘peer’ reviewer colleagues. Lay reviewers can choose whether to participate in the different rounds of grant applications and may express a preference for being involved in specific applications. Different applications require variable time commitments, with grant proposals generally requiring about 3-4 hours of input, perhaps 40 hours across a year, but this is flexible and all input is entirely voluntary. I and Alistair Tranter recently ‘signed up’ to become lay reviewers and spent a very interesting day of training in Sheffield. If any other local members feel such a role might suit them, the contact at Parkinson’s UK is Isabelle Abbey-Vital: [email protected] Cell Transplants Foetal cell treatment aims to replace the cells lost in Parkinson’s with new healthy developing cells from foetal brains. However this poses both logistical and moral issues which have plagued this potential route to a new treatment. Now researchers are working on alternatives such as utilising nerve cells made from stem cells. A trial is being conducted by a team including Professor Roger Barker, a Parkinson’s UK funded researcher from Cambridge University, and has been funded by a 12 Million Euro grant from the European Commission. 150 people have been recruited from across Europe. 40 randomly selected from this group will be offered the chance to have a cell transplant involving foetal cells being injected into the brain. 20 will receive a transplant and brain scans; 20 will be a non-transplant comparison who will also have brain scans. It appears from other studies that brain cells can take some time to ‘bed in’ and the team hope to have results by 2018. It is hoped that the trial will finally provide a definitive answer on the use of foetal cells in Parkinson’s. If it is successful it could be a vital stepping stone towards making cell transplants a reality, using other tissue sources, including stem cells created from patients’ skin. BioResource Initiative A research team from King’s College London have extended an invitation to Parkinson’s UK to join their BioResource Initiative which is funded by the National Institute for Health Research. This is part of a national project aiming to build up a central library of information about people’s health, helping us to better understand why different conditions such as Parkinson’s happen and how we can develop better treatments for them. People with Parkinson’s who join the project will be asked to provide a saliva sample by post, for genetic analysis. If the individual is happy, the sample will be linked to their clinical records via their GP. The data will be available on a strictly anonymous basis to scientists working on ethically approved projects. It could also be used, again with the individual’s consent, as a basis for making contact with people who could potentially take part in research studies which are looking for participants in for example, trials of new drugs. For further information, you can visit: http://bit.ly/1SjjUhE or contact the research team directly: Dr Byron Creese, Research Lead, King’s College, London: [email protected] or 0207 848 8194. Research Opportunities Finally, two more opportunities to get involved in new research projects. Sheffield Hallam University have been commissioned to calculate the economic and social costs for people with Parkinson’s and their families across the UK. The aim is to assemble evidence that can be used to persuade Government how to target resources in these fields. Volunteers of all stages, ages, locations etc. are needed – find out more on: http://bit.ly/1SMoAwJ A research team at Northumbria Healthcare NHS Foundation Trust are looking at ways of improving the end of life experience of people with Parkinson’s, by gathering the views of carers or relatives who have lost a loved one who had Parkinson’s. The team have developed a private internet forum where views can be shared and discussed, accessible on http://bit.ly/1MxdKw0 David Mundy Branch Volunteer Research Liaison Officer Open Monday, Tuesday, Wednesday, Thursday 9-4pm and Friday 10-2pm. We are particularly keen to work with people who are newly diagnosed and provide therapies that are appropriate to them. If you would like to be involved or just want to find out more about the Centre and what it can do for you, please call 01244 678619 or visit our website at www.neurotherapycentre.org PARKINSON’S SPECIALIST NURSES Sue Woods - 0151-350-3327 Western Cheshire Mirain Allen - 01352-803593 Flintshire Don’t forget that Malcolm Johnson has information on transport. He can be contacted on 07761 794824 Parkinson’s UK Helpline Call FREE on 0808 800 0303 Changes in the Information & Support Worker Service Parkinson's UK has made some changes in the organisation of the ISW Service. It will, in future, be called the Parkinson's Local Adviser Service. Our Local ISWs, Rachael Millington and Sara Owen have both been appointed Parkinson's Local Advisers for their existing areas, although their telephone numbers will change. See the Parkinson Post Extra for details. A great time was had by all on the 4th September at Chows in Parkgate FUNDRAISING We are really fortunate in the financial support we receive from a whole range of different sources. Whilst we have our regular fundraising events, there is always something unexpected or unsolicited. Here are some of our recent receipts: The Grosvenor Arms, at Pulford on 12th August We rounded off 12 months as the Charity of the Year at the Sainsbury’s Local Store in Hoole with the presentation of a cheque for £650. The store raised over £2,000 for the Branch during the year. The lunch was preceded by a lovely invitation from David Hodgett and the Pulford Painters at the Community Hall. We were invited to meet the Painters and view some of the beautiful art work they were working on that morning. It was a real pleasure to meet such a talented group of people who made us so welcome. If you enjoy painting and are interested in joining this small group ring Colin for details. The Branch Open Day at the McCarthy’s house and garden in Blacon raised over £600 despite a damp start. Thanks to John and Ann for throwing their house and garden open. DATES FOR YOUR DIARY……. Next Parkinson's lunch is to be held on Tuesday 10th November at The Red Lion, Doddleston, Chester CH4 9NG. Please ring Pam Adams to book in. There is a repeat of the popular Crabtree and Evelyn evening event at the shop at 6, Bridge St, Chester on Thursday 12th November 6-8pm. Great opportunity to browse for Christmas gifts, Raffle and Goodie Bag. Please note that the Christmas Lunch returns this year to Vicars Cross Golf Club, Tarvin Road , Chester, CH3 7HN. Booking essential, to enjoy good food, great company and music and song from the Movers Shakers Choir. Contact David Stoddart on 01244 316534 to book. Our regular supporters, the Tudor Rose Pub have raised more than £500 for Parkinson’s this year. FUNDRAISING CONTINUED Pat and Bob Muirhead donated £100 raised at a party. Young Darcy Smyth, the Chair’s granddaughter raised over £5 at her school fete by selling braids YOGA AQUA-MOBILITY Tuesdays at the Neuro Therapy Centre, Saltney: 9.45 for 10am start. Thursdays at the Oddfellows Hall, Saltney: 2 – 4pm at Total Fitness continues at 10am on Fridays GROUP PHYSIOTHERAPY AT THE NEURO THERAPY CENTRE On Tuesday afternoons at the Neuro Therapy Centre there is an opportunity for people with Parkinson’s to attend a Group Physiotherapy session. The session is run by Kavitha and concentrates on sitting exercises rather than mat work which is difficult for some. The session cost is £5 For more information why not ring the centre on 01244 678619 We collected at two stores for the first time – Morrison’s in Saltney and at ASDA in the Chester Greyhound Park which together raised over £500. GET CONNECTED Feel you are missing something? Not technically minded? Nervous about computers? These regular store collections is a basic income stream for us. We need to mount collections as often as we can. Helping with collections is not onerous – you only need to find a spare hour on the day – and many people really enjoy it. Judy has now taken on the role of orgsing the rotas for collectors. She is gradually working though our records and updating the list of helpers. Would you be prepared to go on the list? When a collection is due she sends an email to all on the volunteer collectors list, asking for offers of help. She then tries to make the best fit. There is no obligation to respond. Going on the list simply indicates that you would not object to being asked. The wider the field, the less onerous for each individual. To go on the list please email [email protected] or phone [01244] 678866 HELP IS AT HAND New technology can help to improve the quality of life for everyone, but there are huge benefits for those who may be less mobile or who may become so. These may include: keeping in touch with friends and family, shopping at home, getting up to date information, contacting your healthcare team, asking for help and advice, sharing problems with others, avoiding feelings of isolation WHY NOT GET STARTED? Malcolm Johnson can offer free introductory tuition for beginners, advice on equipment and setting up – all you need to get yourself launched. Tuesdays 13:00 till 15:00 Phone Malcolm and make an appointment on Tel: 01928 723383 or 07761 794824 [email protected]