Guess What? We Are Now A Charity

We are very excited and proud to let you know that Northants Parkinson’s People are now a Charitable Incorporated Organisation (which is a new type of legal format for a registered charity).
By becoming a Charity, we can better serve and support more people affected by Parkinson’s in Northamptonshire. We have been busy filling our new website with information you may find useful and this month’s newsletter is an invitation to click onto the website and to take a look.

We also thought that you might first like to read about how Parkinson’s support began in Northamptonshire (including who paid for our first nurse!!) (see below) and also learn who has helped us so far in our quest to support people in our local area. If so, read on, if not – please go straight onto the website by clicking on this link:
The History of Parkinson’s Support in Northamptonshire. 
As best as memory allows. By Val Hamblin

In 1969 Mali Jenkins founded the Parkinson’s Disease Society (PDS) in London. Mali’s sister Sarah had Parkinson’s but there was no support or associations to help people affected by Parkinson’s at the time. Over the next ten years, the PDS grew slowly with people joining the membership. We had a few members in Northampton, myself included, as my husband Ron was diagnosed in 1975. At the time Ron and I had two young children and a business to run: his diagnosis was indeed a blow to our little family.

In the 1980s the PDS contacted all the Northamptonshire members to arrange a meeting with a view of forming a local branch. The attendance at the meeting was not high, with only about ten of us there. However, during that meeting at the Gladstone Centre, the first committee was formed. It was a shaky start and we worked hard to gather more support, and eventually, in the late 1980s the branch was inaugurated, with Janet Saunders as Chairman and Countess Spencer became the first Branch President.

I was in charge of fundraising and so began work organising raffles, cake sales, tombola’s etc. We regularly popped up our ‘Parkies Pantry’ – selling homemade cakes, biscuits, jams etc. at fetes, markets and various events.
Val, Daphne and Pat
We also organised ‘Peddle for Parkinson’s’ days using the old Lamport Railway line and borrowing the enthusiasts’ catering hut to provide packed lunches for the cyclists.

We spent our money locally on supporting people and we set up a monthly Support Day for people with Parkinson’s and their carers. I happily organised this group for more than twenty years. We also had an information drop-in at St Edmund's Hospital and in Daventry. We had many Summer Lunches or BBQ’s, Christmas Meals and regular meetups. We had boat rides and bus trips out. 
Top image: a Boat trip on the River Trent.  Lower left: Daphne & Val cut the cake at a Christmas Party. Lower right: Tulip Centre Helpers on a canal trip.
By 1991 we raised enough money to employ a part-time Welfare Officer – the first in the country for people affected by Parkinson’s. Our first Welfare Officer was Jenny Chapman. Jenny identified a need for a volunteer visitor service, and we employed Jenny Osbourne in 1993 to facilitate this(some of you may know Jenny Osbourne as she now works for Carers Northampton). Jenny O recruited volunteers to visit isolated people in their own homes, hospitals and care homes. We continued to pay for a support worker until 2008, then the PDS took over the provision of this role and spread the service across the country to ensure everyone could access support. We did, however, continue to send money regularly to head office to cover the cost of our support workers. (Sadly, in more recent times this service has diminished due to redundancies and other cutbacks).

Around 1995 a plan was put in place to raise £37,000 for the purpose of providing a specialist nurse. The branch would pay for the first two years whereafter the NHS took over the cost. Fundraising began in earnest as we needed to pay for the nurse and continue to cover the cost of all the other support.

A steering group was set up involving Daphne Kennaird (Branch Chair), Dr Beryl Morgan (Elderly medicine), Dominic Seston, Philippa Dearie (Clinical Auditor) and myself (Val). This group was to decide exactly how we wanted a specialist nurse to support people with Parkinson’s and to ensure the service had a positive outcome.

More targeted fundraising began:
    • 1996 saw a pro-am cricket match held at Althorp - a very young Garry Lineker was in the team. Members of the council of management from PDS also attended. 
Pro-am Cricket Match
    • Earl Spencer held a Musical Evening followed by dinner in the state dining room, followed by an auction. One lot had been provided by Princess Diana.
    • Pearl and Ian Graham and myself did a sponsored walk of Hadrian’s Wall. Marks and Spencer kindly fund matched what we raised on the walk. 

Val, Ian & Pearl - Finish line

• We had street collections and a stall at Northampton Motor Show.
• Graham Ridley, a son of a supporter, ran the London Marathon for us.
In November 1997 Pete Smith became the first-ever Parkinson’s Nurse in the county and one of only a few PD Nurses in the country. Now there are specialist Parkinson’s nurses in almost every county, but we are proud that we were able to begin this support early in Northampton, thanks to support from Northamptonshire people.

Afternoon tea was served in the Guildhall to more than 100 guests in celebration of Pete being appointed. Among other local celebrities, we welcomed Sir John and Lady Lowther, The Duchess of Gloucester and Earl Spencer to the celebrations, which also made the news on Look East. Pete spoke on Radio Northampton letting the local people know about this new service and the branch advertised in local media.
Duchess of Gloucester talking to committee members and a young Pete Smith in the background
In the first year, Pete and the Branch did many education days (mini-conferences) for professionals,patients and carers. Pete quickly got to work and had many referrals which had been awaiting his arrival and his caseload quickly grew to around 200 patients and grew steadily thereafter.

I hear on the grapevine that Pete is back with us in the county after working more recently in Milton Keynes and then London. Welcome home Pete!

Also, in 1997 Daphne Kennaird became our Chairman and our newsletter editor supported by Gerald.

Local people recognised our dedication to supporting people with Parkinson’s and were very generous in supporting us. Many local families went to great lengths to support us. Just one which I recall was Sean Newman, a local businessman who cycled from John O’Groats to Penzance and raised an amazing £36,000.

The Tulip Centre was started August 1999 at the Doddridge Centre in Northampton. The organiser was Liz Seaton and Sheila Hubbard the assistant. In June 2000, Sheila became the organiser with Rose as assistant. The Tulip Group moved to St Crispin Retirement Village in 2008 and Angela Jeffery took over in 2013. We had a few battles with head office to keep this group open over the years, as it was an expensive service to keep going, but we always raised enough funds to cover the costs, with many local people specifically earmarking the group as a very worthy cause.

Having taken on various roles over the previous ten years I became Branch chair around the year 2000 and at the same time, Lady Lowther became branch President and Pamela Dunn Vice President, both supporting the branch for 19 wonderful years. 
Lady Lowther has raised thousands of pounds for us over the years selling her beautiful plants
Lady Lowther & Pamela Dunn 
I have such wonderful memories over the years and it was an absolute honour to be invited to a Buckingham Palace Garden Party through the recommendations of Lord and Lady Lowther. Myself, Daphne, Gerald and my daughter Louise put on our ‘glad rags’ for the occasion 

Val, Gerald Louise and Daphne, Daphne had broken her leg but we took her out of the hospital for this special occasion
The old Branch, which included David Hubbard who brilliantly carried out the role of treasurer, and Coral Goodman, equally as fantastic as secretary, were responsible for many initiatives over the years as above and also more recently: gentle exercise group in Abington with Julia and Angela, then Reach for Health Group with Elaine in Daventry, followed by Towcester exercises also with Elaine. 

As I have reminisced about Parkinson’s support in ‘old times’ it has become so clear to me that the people of Northamptonshire have been amazing at supporting people affected by Parkinson’s over the years. I am very happy to be part of Northants Parkinson’s People who are a great group of individuals affected by Parkinson’s. We will all be working to bring back support services to our local community.

Val Hamblin – Committee Member Northants Parkinson’s People
If you want to see who has helped us so far, please see the article below
Or come back later and go straight to our new website, all newsletters are available in our archive on the site
Thank you, Thank you, Thank you

We have been tremendously fortunate so far with financial donations and we would like to take the opportunity to thank the people who believe in us. We won’t let you down - we are determined to support people affected by Parkinson’s disease within Northamptonshire.

In the order of when we received support, we wish to thank, firstly, Simon Ingram’s generous family (Simon is one of our brilliant volunteers and he is stalwart in his fight against Parkinson’s – see our volunteer page on the website).

From Simon: A huge number of my family and friends have donated time, money and effort to Northants Parkinson’s People already. This includes:
Jim Berry – Father-In-Law
Stuart Lagden - Cousin
Lyn Berry – Mother-In-Law
Tom Lagden - Nephew
Selma Ginn – Mother
Hannah Lagden - Niece
Roy Ginn – Step-Father
Sharon Timms - Cousin
Maureen Burn – Great Aunt
Andy Timms - Cousin
Gayner Lagden – Cousin
Sam Timms – Nephew
Rebecca Kemp - Niece
Thanks, largely to their efforts, the charity can very quickly help the people affected by this debilitating illness to better understand their situation.
We would also like to send a heartfelt ‘Thank You’ to Pamela Dunn who has long supported the fight against Parkinson’s disease………

Pam sends Northants Parkinson’s People her best wishes and says she has been very much enjoying the newsletter and is pleased to donate to our worthy cause.
Thank you to Becs Connelly who made some beautifully decorated Christmas lighted bottles, raising money at exercise group, plus we had a few DVD and Book sales – thanks to everyone who purchased, all proceeds went into the kitty.
Thank you to Sylvia Nightingale, one of our volunteers, who has grown and sold lots of varieties of plants and vegetables and donated the profits of her labour to Northants Parkinson's People
Thank you to two people who were unable to attend our Christmas Lunch and instead of having their money refunded, donated it to us instead. We missed you but thank you for your donation.
Two long-standing attendees from Val’s old Support Day sadly passed away recently. Their lovely wives: Kathy and Anne very kindly asked for donations in memory of Bernard and Robin, to come to us. Thank you so much, ladies. We thought it would be a nice tribute to publish a few words about these great gents.
Bernard Dearsley
Bernard was born in 1932 in Mitcham. London was his home until he was evacuated firstly to Surrey and then to Buckinghamshire and finally to Northampton. Bernard did National Service in 1950 for which he was very proud and enjoyed his time in the Army, being posted in England and Germany. He was a tank driver and instructor.
He came home and settled with his mum in Great Houghton and worked various jobs before ending up as a toolmaker at Roade factory which is where he met Kathy, who was sweet sixteen at the time. After four years they married in Roade church. Bernard and Kathy’s first home was in Bibury Crescent, Northampton and later they moved to Wootton. They had 2 children Martyn and Alison.
Bernard had his own refrigeration and air conditioning business for 15 years. He worked very hard and was well respected in the town.
In later life, Bernard developed a passion for golf and would spend many happy days at Silverstone playing rounds with his friends. Bernard and Kathy would also spend many happy times on holidays and trips to the coast. One memorable and exotic trip was taken to the famous Château Frontenac, Quebec, Canada. They knew how to enjoy life and celebrated their Golden Wedding Anniversary in Las Vegas. Their 60’s Anniversary (Diamond) was a big party for family and friends at the Marriott Hotel with about 150 people enjoying afternoon tea.
Bernard was very proud of his grandchildren and a keen supporter of their hobbies, after retirement he enjoyed attended sports days, football matches and bowling tournament. He treasured family times.
Bernard and Kathy both enjoyed and looked forward to going to the Parkinson’s support group. They were happily married for 62 wonderful years.
Robin Munro
My loving husband Robin died peacefully with me by his side on the 31st of May 2020. He had been a wonderful partner, lover, friend, support and soulmate. I cannot believe that we would have been married for 59 years on August 23rd. In our early years together, we had many high and lows. We didn’t really experience the “Swinging sixties” as we had two sons, Steven and Neil! We were both teachers in Northampton, but I stayed at home with Steven for a few years as he was born deaf-blind as I’d had rubella in pregnancy. Rob was a very supportive dad and drove Steven from his special school in Shrewsbury to home and back every weekend from when Steven was 5 until he was about 10 yrs old. Rob worked out he had driven twice around the world on those pre- motorway roads.
Rob had also advanced his career, working in his spare time to get both a B Ed and an M Ed degree. He then became a Principal Lecturer, teaching students on the B Ed course at Nene College, now a University.
We went family camping in school holidays, and as we all were happy in each other’s company we would often take 4 or 5 weeks together, thus making many new French and German friends for life and being able to chat, eat, drink, becoming true Francophiles!
Suddenly life changed. Steven died without warning and Rob was diagnosed with Parkinson’s. We knew no one with the illness, had no family except Neil, and relatives and friends who lived
hundreds of miles away. However, we carried on with life as the illness was not really noticeable. We bought a small camper van, which we both could drive and kept visiting France until Robin couldn’t drive any more but then our foreign friends visited us instead.
Then came a ray of light into our lives, as we met Angela and Val, and we joined the group that Val ran. We were no longer alone with just the professionals trying to help with medications, mobility equipment etc. Now, we had a group of people who could offer practical help with form filling; we could talk honestly about any social or physical difficulties and get really good tips from others in the same position. Rob and I loved the monthly informal get-togethers, and honestly didn’t just go for the lovely lunches! We were given positive help in dealing with problems. We were listened to. We had real friends now to talk to. We had compassion and understanding and we helped each other with lots of laughter and some tears.
All of the people in the old group and Angela and Val are still there for me and that makes it easier to get through sad times; on Robin’s behalf thank you for everything. Anne
We also wish to thank the McGuinness family and Keith Fossey who very generously donated to us after Angela gave a zoom presentation about the new Charity, to the Nene Valley Rotary Club. They were impressed with our Charity aims, believe in what we have planned and wanted to support us. Tony – our treasurer is in this Rotary Club and Anne Munro is a friend of the McGuinness’s. Also, folks from the Tulip group will remember Keith who came and told us about his Charity:
We are very lucky to have such great friends and supporters and we really appreciate every penny which is donated to us and we will ensure all funds will be spent on supporting people affected by Parkinson’s.
Finally, we wish to thank Terry Cadby, who is an old friend of Simon and Angela. Terry has written the following for us:
I am a member of the Lodge of Harmony No 9048 in the Province of Northampton & Huntingdonshire. Having joined Freemasonry in 2010. I became Worshipful Master of my Lodge in September 2017, as part of being the worshipful master you are able to undertake an event to raise monies to then donate to your chosen charities.
During the Easter weekend of 2019, myself and 3 other people (2 other masons and a non- masonic friend) undertook the task of visiting 48 football clubs (league and premiership) in 48 hours (not as easy as it sounds). We started at N’pton Town FC at 10 am on Saturday morning and went as far west as Hereford, as far East as Norwich, South to Portsmouth and North to Mansfield. A lot of fun and banter was had, as I am sure you can imagine, with me being mainly the butt of the jokes hahaha. We finished back at N’pton Town FC at 5 am on Monday morning, with 5 hours to spare and had duly raised £2000 in total.

We donated £1,000 to Cynthia Spencer N’pton as sadly most families are touched by Cancer.
I always wanted to donate the other £1000 to support Parkinson’s due to my long friendship with Simon.

I am hoping that this amount of money will give your charity the opportunity to help PD sufferers experience something new or something they enjoy. Terry Cadby
Simon Ingram receives a cheque for £1000 from Terry Cadby
For our Regular Readers
(and Our New ones)
The newsletter will be back to its normal content format next month. News, Stories, regular features.
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Don't Forget!  check out our new website
Northants Parkinson's People is registered in England as a charitable incorporated organisation,
Registered office: 31 Winston Close, Nether Heyford, Northamptonshire. NN7 3JX
Registered charity number 1188652
Copyright © 2020 Northants Parkinson's People

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