Swindon & District Branch

Contact: Ruth Panting. Email: [email protected]

BOXCAM September 2018

We supported the BOXCAM 200 Parkinson’s Charity Cycle Ride for the second time by providing the rest stop at Radcot House on a very wet Saturday in September.

The extremely cold and wet cyclists were very grateful on arrival after their 77mile cycle ride from Bristol to have hot drinks ready for them, especially Daphne Logan’s homemade sloe gin and rhubarb and ginger gin to help spur them on to finishing the last 23 miles to Oxford.

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Unfortunately day two of the cycle ride had to be cancelled due to the adverse weather forecast. . We received this ‘thank you’ from Katy Payne, Head of Events PUK, who wrote, “I just wanted to say a massive thank you for all your help and support with BOXCAM last week. You and the whole branch were fantastic. We have received so many lovely compliments from our riders about your hospitality and the welcome cups of tea and coffee. Thank you so much for all your efforts and for supporting us on such a wet and miserable day. Please do pass on my thanks to the branch and I hope very much to see you again soon.”

As Chair I also extend my sincere thanks to all who supported the event on that very wet Saturday, also John Smart, a Branch member, for providing the transport to move our equipment to and from Radcot House and his son Ian who gave up his Saturday to do the driving, help set up and take down at the end. They were all stars on the day. Dave Logan. Branch Chair.

th Quiz Night 26 October

We held a quiz night on 26th October at Grange. I am pleased to say fifty nine people came along. The evening started with an A4 sheet that had ten pictures of chocolate wrappers to be identified. This round scored very well with almost everybody getting correct answers.

The same story did not apply for the four rounds that followed. There were ten teams with six people in each. These sixty people only managed to get less than half of the answers correct! As they say, it is not about winning but taking part; I imagine this was said by a loser!! The main thing was to enjoy ourselves and, looking around the room, it was clear that a good time was had by all.

The buffet was provided by Dawn, Ann, Daffers and Teresa. Looking at the almost empty tables this went down very well – thank you.

Well done, Dave and Roger, for making up the quiz and we look forward to another one after Xmas. Tony Falkingham. Branch Vice Chair.

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Don’t forget these on-going events:

Monthly Coffee Mornings

Every first Tuesday of the month a coffee morning is held for the Swindon and District Branch of Parkinson’s UK at Justin Tomlinson MP’s office in the Orbital Shopping Centre, North Swindon. It starts at 10.00am and provides a sociable time for people with Parkinson’s and their carers.

Justin's Office tweeted at 4:48 pm on Tue, Oct 02, 2018: https://twitter.com/OfficeJTMP/status/1047090929461542 913?s=09)  

Respite programme

This is held at ‘Hop, Skip and Jump’, Upper Shaw Ridge. Ridge Green, Shaw, Swindon, SN5 5PU, and provides four hours of free respite care each Monday during term time for people with Parkinson’s. For more details, contact: Keith Cooper on 01793 871848.

Exercise Programme

The Branch also provides the following exercise programmes:

Walking Football Tai Chi Balance and Exercise Seated Exercise Dance for Parkinson’s.

If you want more information on these classes you can contact: Dave Logan (Chair) on Telephone: 01793 486407 Mobile: 07887 354641; Email: davelogan_parkinson’[email protected] Web: www.swindonparkinsons.org.uk

Exercise can potentially slow down the progression of Parkinson’s – something that no current treatment can do.

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Steam Christmas Fayre at Steam Museum. Sat 1/Sun 2 Dec Branch Two-Day Tombola Stall.

Branch Christmas Lunch with welcome drink and wine on Sun 9 Dec the tables at Double Tree by Hilton - £15 members, £25 non-members. Book & pay in advance. 12pm arrival for 12.30 sitting.

???Jan Race Night at Stratton Churchways Bowls Club.

Talk by Ken Mumford titled ‘Down Memory Lane’ – stirring memories of the past and encouraging Fri 8 Feb audience participation. Tea, coffee & biscuits at Grange Leisure Centre. 7pm

Branch AGM at Supermarine Sports & Social Club. Fri 8 Mar Starts at 7pm. Seating at round tables. Cheese and wine at the end.

Winners for October Winners for November Anne Culley Tony Falkingham Jean Rogers Jeff Culling

Help our fundraising efforts by joining the ‘100Plus Club’ at a monthly cost of £1 per number.

If you are not already a member and would like to join the monthly draw you will find the rules on our website www.SwindonParkinsons.org.uk

Thank you for your interest in the 100 Plus Club Monthly Draw .

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Developing Drugs to Combat Build-up of Alpha Synuclein in Brain Cells

Alpha Synuclein is present in the healthy brain. However, it has been found that in brains of many people with Parkinson’s disease, Alpha Synuclein has clumped together to form ‘Lewy Bodies’.

In the May/June Newsletter ‘Parkin Lot’, there was an article about Professor Peter Magill’s research at the Oxford Parkinson’s Disease Centre into the effect Lewy Bodies have on the function of brain cells. Lewy Bodies are often found in brain cells of people with Parkinson’s and there is evidence that they play an important part in the loss of brain cells and the progression of Parkinson’s.

There are further projects that are developing treatments to find drugs to combat the build-up of Alpha Synuclein, two of which are mentioned below.

Professor Maria Grazia Spillantini of University of Cambridge and her team are investigating a potential drug (Anle 138b|) which has been shown to reduce the ability of Alpha Synuclein to form Lewy Bodies, using mouse models. The team hopes to progress towards clinical trials.

Another Project, being conducted by Professor Anthony Schapira of the Institute of Neurology, UCL, is targeting GBA in Parkinson’s. The GBA gene provides instructions for making an enzyme called beta-glucocerebrosidase inside cells. Changes in the GBA gene are a risk factor for Parkinson’s and can increase the potential to develop Parkinson’s. Anthony’s previous research has shown that these mutations lead to Alpha Synuclein building up in brain cells. He also discovered that a drug called Ambroxol may be able to help. Now Anthony and his team plan to investigate whether Ambroxol can slow the spread of the Alpha Synuclein protein in a mouse model. This information could help researchers design future clinical trials.

The information was taken from the following website: https://www.parkinsons.org.uk/sites/default/files/2018- 05/CS3083%20Active%20research%20projects%20-%20May%202018%20update.pdf

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Information

Parkinson’s UK Financial Assistance 2019

From January 2019, Parkinson’s UK financial assistance grants will be available across the UK to people with Parkinson’s and their unpaid carers.

Our grants cover a wide range of items and services to help people affected by Parkinson’s feel more in control of their life with Parkinson’s or simply to improve the quality of their everyday life with the condition.

The application form and guidance for applicants can be downloaded from our webpage or mailed to applicants on request. Feedback tells us that the application process is clear and straightforward and applicants are well-supported by our Local Adviser service.

Grants of up to £1,500 are available to help purchase specialist equipment like mobility scooters, profiling beds or home adaptations. We work carefully and closely with local authorities to make sure we work alongside any local statutory entitlement and we always insist that applicants have taken appropriate advice from an occupational therapist or physiotherapist when deciding on the right equipment for them.

Grants of up to £1,000 are available to fund day or residential respite care – though we do not fund holidays. As with specialist equipment, we work with local authorities and take advice from Local Advisers to ensure that local statutory entitlement has been explored.

We fund household items, including electrical items or digital equipment like tablets and laptops to a maximum of £500 and we can make grants of up to £250 in our ‘activities’ category to help someone to access a class or activity which would help them get physically active or feel more socially connected.

You can read about grants we have made in each of these categories on the next page.

Because we want to reach people with Parkinson’s who are in greatest need, combined household savings must be less than £16,000 to apply for a grant.

We protect each applicant’s complete confidentiality. We remove identifying details from all application forms and supporting information before our volunteer grants review panel members – who all have a direct personal or professional connection with Parkinson’s – make their decision on whether a grant should be awarded.

Since March 2018, we have received almost 40 fundable applications and we are on target to grant a total of £39,000 this year in just four ‘roll-out’ areas. We expect to award at least £100,000 in grants across the UK next year.

We hope that local groups that are in a strong financial position will consider including a transfer to our financial assistance grants scheme in their budgets for 2019 so that we can support even more people affected by Parkinson’s next year.

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Parkinson’s UK Financial Assistance 2018: What difference did we make?

In March 2018, Parkinson’s UK financial assistance grants were launched in four ‘roll-out’ areas, representing approximately 25% of the UK population of people with Parkinson’s. We wanted to test our new approach to grant-giving as we prepared to go UK-wide in 2019. In just six months, we received 36 fundable applications with a total value of £30,530.

Here are some of the ways that a financial assistance grant has changed the life of someone with Parkinson’s who is facing financial challenge or need:-

Mr A was without hot water and heating and, despite significant mobility issues, was forced to cross town to use his close family’s bathroom rather than the specially adapted facilities in his own home. Historic debt, caused by obsessive compulsive behaviour related to his Parkinson’s meant his assessed, required contribution to a local grant scheme was way beyond his financial means. A financial assistance grant covered that contribution and work was able to start immediately to install a new boiler.

Recently widowed, Mrs P has lived with Parkinson’s for over 10 years. A modest activity grant of less than £250 allowed her to make a sentimental journey back to her birthplace to reconnect with family and old friends, accompanied by her son and daughter-in-law. Mrs P told us “Having someone else do the cooking for a day or two makes a complete break but seeing family and friends again is priceless.”

Living alone in a hostel on subsistence funding, Mr Q needs carers to shop for him and prepare his food – often ready meals - in these most basic conditions. At 62, and seven years into his journey with Parkinson’s, Mr Q has significant mobility problems. He has worked hard with help from the local rehabilitation team to master the flight of concrete steps he needs to negotiate to leave the hostel. He can’t walk far, nor manage public transport With the benefit of a financial assistance grant of £250, Mr Q can now afford to use a local taxi firm to access a community choir for people with Parkinson’s and . attend his place of worship. He also plans to join his local Parkinson’s group

Diagnosed with a rare, genetic form of young onset Parkinson’s at 29, Mrs H has lived with Parkinson’s for over 20 years. In her application she told us she “is unable to travel and rarely leaves the house these days”. Her new Apple iPad, supplied by a financial assistance grant, enables Mrs H to stay in contact with her children who live some distance away and she now takes advantage of our online support groups. On hearing about the award Mrs H told us, “I honestly have never done anything like this before, though my friend had been encouraging me to join Parkinson’s UK and meet people. I’m so happy I will now be able to speak to my children on a daily basis via an iPad”

At 77, Mr B’s Parkinson’s had begun to affect his ability to walk upstairs safely and his wife, who is also his carer, confided to us that she “followed up behind him, just in case he was to topple” putting them both at risk of falling and injury. Mr and Mrs B were keen to purchase a stair-lift with our help but our experienced grants panel needed to be sure that the couple had the advice they needed from a professional source. Following a detailed assessment report from an occupational therapist, Mr and Mrs B were awarded a financial assistance grant and now have a stair-lift which Mrs B rang to say “has completely transformed our lives and taken so much worry away.”

By the end of 2018, our financial assistance grants will have provided…. 13 items of specialist equipment 5 home adaptations 6 household electrical items 5 laptops or tablets 4 activity opportunities 2 residential respite breaks …. and improved at least 35 lives.

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The Parkinson’s Me Community Garden

After two years of hard work by a group of committed volunteers, the ‘Parkinsons.Me‘ community garden is now open. The opening ceremony was performed on September 15th 2018 by Paul Mayhew-Archer, script writer for ‘Vicar of Dibley’ and other sitcom comedies for TV. The garden is located in West Lockinge, Oxfordshire, OX12 8QE, about two to three miles east of Wantage. The public are invited to visit, especially families affected by Parkinson’s.

“The garden will eventually have exercise equipment and opportunities for more physical training when digging the produce beds; areas for communal meetings and parties; space to rest and reflect on the beauty of the surroundings and plenty of room to grow the healthy fruit and vegetables that can make such a difference for people with Parkinson's.” Read about the Community Garden: www.parkinsons.me/blog

From this... to this in 12 months, entirely with volunteer labour.

‘Parkinsons.Me’ was founded by Ewan Stutt following his diagnosis aged 41 in 2013. Ewan gave a talk to us about his ‘Parkinson’s.Me’ website/charity at the Grange Community Centre in July 2016. “The charity provides positive support and advice to families affected by Parkinson’s. The aim is to help families create a ‘new normal’ by looking after each member’s emotional and physical health in mutually supportive ways.”

This information was taken from the following website: https://www.parkinsons.me

Personal

A Letter to Myself, …continued

Continuing from the last newsletter – Dave Logan’s letter to himself. ……..The next couple of days flew past and I am proud of how you handled that. Following your attestation into the Royal Air Force and taking the oath, your real journey both in travel and life began. You boarded the Belfast to Hashem mail boat with others who joined up with you on the same day, to cross the rough Irish Sea and then the long train journey across England to RAF Swinderby in Lincolnshire.

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So, your new life has started and here I must pass on some advice to help you through the next fifty two and a bit years that lead to me writing to you now. However, I have my doubts that the young man that you are now will take much heed.

I have no doubt that you will sail through your square bashing (initial training) which will take place at RAF Hemswell, where you will move to after being kitted out at RAF Swinderby.

My first piece of advice is always to remain true to yourself, the principles you were brought up with: a team player, yes, but not a sheep. Always do what you think right and don’t be lead. Also, don’t tolerate bullies, which no doubt you will come across in the years ahead. Remember, at heart they are all cowards, just as you found out when at national (primary) school and, with one hit, you put the playground bully on his back. He never bullied again.

After your ‘Passing Out’ parade at RAF Hemswell, you will feel an anti-climax, mainly because our parents could not make the journey from Dublin to Lincolnshire to be there, supporting you on this important day. Being the odd one out is never a nice feeling, particularly seeing others going off on leave with their families. After being in such a tight knit community for the past couple of months, you will find yourself alone and having to face the long train and boat journey home to Dublin with just your own company. However, you will find yourself a much stronger and a more mature person then the nervous young man you were on leaving home, and the journey will quickly pass.

And so onto RAF Shawbury for your Air Traffic Control trade training. Time for some more advice, because you will find the multitude of trade exams pass mark, not the 40% you were used to when doing your Intermediate Certificate, but a massive hike to an 80% pass mark.

My advice is to form a group with other trainees and study together after dinner, quiz each other and only when you are all satisfied that you have achieved your aims for that evening, venture out to the NAFFI for a beer and a snack. Yes, I know you are not old enough yet to drink, but what the heck! You will have earned it.

I am confident you will pass all your exams and in the process realise your abilities to be much greater than you thought they were not that many months ago. You will leave RAF Shawbury well prepared for your future life – better able to deal with life’s trials and tribulations and whatever is thrown at you. Believe in yourself and remember to have a positive outlook; your glass must always be half full and never half empty.

I am not going to go much further by telling you what your future holds for you. Life is what you make it, full of twists and turns and decisions to be made. The way forward is in your own hands and no doubt we will meet again in 2018, the year I am writing this letter to you, to myself, in this surreal world.

Yours sincerely, your very self David Logan.

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Find the answers in this Newsletter – no prizes though!

Season’s greetings

Season’s greetings to to all our members all our members

Thank you to all those who have contributed to this newsletter. The deadline for articles for the next newsletter is January 11th.

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