“I have seen at first hand the power of talking about my lived experience of a rare disease.? By providing first hand testimony I am able to provide some of the facts behind the statistics.? Daily life may be becoming slowly more difficult, but this does not stop me trying to create change and making something positive out of my situation.”
Our Campaigns Contact volunteer, Katy Styles, tells us her story about why she volunteers for the Association?
?The MND Association support people living with MND, but did you know it also supports those with Kennedy?s Disease, their carers and families.?But how much do you know about this rare disease?
Kennedy?s Disease is also known as Spinal Bulbar Muscular Atrophy. It is a rare disease and no one currently knows how many people live with it in the UK, so you may not have come across it as a volunteer or member of the Association. Kennedy?s Disease is a progressive neurodegenerative disorder which means that people with?it live with muscle wasting, mobility and breathing problems, swallowing and speech problems and a range of hormone problems.
My husband Mark was diagnosed with Kennedy?s Disease six years ago, until then?we had no idea that it ran in his family. He has gone from being physically active to depending on crutches and a wheelchair to get around. He uses a breathing machine at night to support his weakened chest muscles. He also?has a modified diet as he has problems choking. In addition, he is monitored regularly for diabetes, a complication of Kennedy?s Disease. Kennedy?s Disease has many aspects people living with MND would recognise.
When we first joined the Association, little was spoken about Kennedy?s Disease. I met volunteers and staff who have never heard of the disease and if they had they were not aware of the problems someone with Kennedy?s would face. ?Mark and I knew then that we needed to volunteer with the Association to change this and through volunteering we could ensure that Kennedy?s Disease would be talked about and better understood.
I never realised when I first volunteered for the Association what difference raising awareness of the disease would make. Now there is a dedicated clinic supporting people with Kennedy?s Disease with a research programme. We?ve mentioned Kennedy?s Disease in Parliament and in March the Association, the clinic and UK Kennedy?s Disease (a charity set up to fund research into Kennedy?s Disease) are holding the first ever Kennedy?s Disease patient?s day. Things have come a long way in the four years we have been involved with the Association.
What can you do as a volunteer to support someone with Kennedy?s Disease?
Support anyone with Kennedy?s as you do with MND
Signpost them to the new clinic at Queens Square and encourage them to sign up to the Patients Register
Show them the MND pamphlets and literature provided by the Association, as these also apply to people with Kennedy?s.?
For more information about Kennedy?s Disease please download information sheet 2B from our publications list.
The funeral was held for William Ashby (affectionately known as Bill, or Pussy- Cat-Willum)? on 9th December 2016 at Charing Crematorium. His wife Peta and their children attended as well as many, many friends and family?the hearse was a wonderful old blue painted Chevrolet, his coffin?placed on the flat bed of the truck, was made by members of his family and lined with silk . The entourage of vehicles following the hearse included many vans from his business, and splendid Harley Davis out-riders.
The service was moving and intimate, with shared memories and reflected the very real sense of fun about this delightful man. There was subsequently a gathering at Little Silver Hotel in Tenterden attended by many of his family, friends, and colleagues.
2016 has been an interesting and successful year for MND Association East Kent Group.
The year started with a party at the Wrotham Arms in Broadstairs, followed in very short order by a Support meeting in Folkestone and a visit to Westminster where 6 people affected by MND addressed some 42 Parliamentarians.
Young Carers Awareness Day was also in January, which was followed by the Burns Night Supper at BinElla in Faversham.
Mark and Katy Styles spoke to the Psychology Society at the University of Kent on Tuesday 23rd February.
During April The Campaigning Toolkit, the brainchild of East Kent’s?Katy Styles was launched, A Masquerade Dinner in Tenterden raised almost ?10,000 and the?South Coast Road?Trip tee shirts went on sale, together with announcements of the events in East Kent.
A brilliant Spring Lunch was held in May and the press release for the South Coast Road Trip was sent to all media outlets.
June was the month of the South Coast Road Trip with 19 events in 17 days as Clive and Lynn Hudson travelled by public buses from Broadstairs to Land’s End, raising over ?10,000 and also creating great awareness of MND in the process.
The Clock Tower in Herne Bay was lit up with MND colours and MND awareness day and The Podplus 5K run was yet again a success was a successful run raising funds for MND in East Kent.
Campaigning were busy at Parliament for a Carer’s Week Reception representing pwMND and their carers.
In August Summer was in the air with great music at the Broadstairs Summer Hop at The Pavilion, which followed on into the evening at the Wrotham Arms.? Daren Edwards was catching enormous fish in France and the signed road trip shirt went on display at David Niven House.
Katy Styles addressed The National Council for Voluntary Organisations (NCVO)? Campaigning Conference on September 3rd, being the only volunteer to address the meeting.? On the same day Judy Keay attended Project Respect, which?is the MND Association?s Equality, Diversity and Inclusion Strategy ? and?all members are encouraged to help shape it.
Clive Hudson, Mark? and Katy Styles attended the annual conference of the MND Association held in Derby on Saturday 10th September.? Please see https://mnda-eastkent.org.uk/wordpress/?p=1849 for full details.
Anne Pomeroy walked 100KM along the Thames raising ?1650.93 for MND Association East Kent.
The Co-op run from River to Mill Hill was on 30th September.? The run followed the diagnosis of MND given to local lady Linda Clarke.? The run raised over ?1000 for MND. See https://mnda-eastkent.org.uk/wordpress/?p=1876 for more information.
We held a volunteer recruitment day in Canterbury in early October, the event was an interesting experience and we learned much about how to present any future recruitment day. Unfortunately it was a foul day and we were not successful in gaining any new volunteers.
Judy Keay, Chrissie Batts and Mark and Katy Styles attended a Parliamentary Reception on October 18th, representing the East Kent Group.
They all spoke with?Julian Brazier, MP for Canterbury and Whitstable who attended and promised to follow up the points made at the reception, and other MP’s at the reception. ?Mark and Katy also spoke to the Minister, Penny Mordaunt about their concerns .
Our year ended by funding the installation of a hoist for Martin living with MND, making a contribution to our CEO annual appeal and enjoying a wonderful Christmas Lunch at Yarrow Hotel in Broadstairs.
A short while ago MND Association East Kent were able to support a person living with MND, by funding the installation of a hoist to improve quality of life when travelling.? Ela Miller sent us this letter which we publish in full with some photographs of the hoist.
I would like to thank?MND Association East Kent?Group and all those involved in helping us with the hoist fitting. Martin is in his 4th year of living with MND and found being in the back of the van when travelling quite difficult and always having to sit in the back with his wheel chair, when I turned the van it was hard for Martin to adjust himself back into a straight position. It?was very?uncomfortable for him.
We started looking for other options, which to our surprise we found on the Internet a Milford lift second hand, what a great idea. ?Martin is now be able to sit in the front passenger seat of the car, all I have to do is put the sling on him and press the button of the lift and automatically it lifts him in the car.
I would like to thank the?MND Association East Kent Group?for helping us with the cost of fitting the Milford lift.?It was expensive to fit it in the car as it had to be done professionally.
The lift is fantastic and it makes Martin feel human again instead of being put in the back of a van and feeling singled out .
Thank you so much to MND Association East Kent Group for making this possible.
We had a wonderful lunch at the new Yarrow Hotel in Broadstairs on Saturday 3rd December 2016.
We had?36?guests?plus a couple of delightful babies.
The Yarrow provided an excellent meal starting with Smoked Salmon, followed by roast turkey with all the trimmings.? Our meal ended with Christmas pudding, tea and?coffee.
We were visited by The Canterbury Ladies Choir who sang some beautiful carols, some of which the guest were encouraged to join in.
As ever we had a fantastic response to our request for raffle gifts.? We decided to held both a tombola and a raffle to avoid the raffle taking too long to complete.? This was great success.
We had been donated a beautiful crystal necklace which we auctioned.? Lynn Hudson was the auctioneer and the necklace was bought by Philomena Lawrence.
Thanks to the wonderful support on the day and a generous donation by Pat McCabe,?we made a small profit which will be used to raise more funds in 2017.
Tube feeding is sometimes suggested in MND.? If you want to learn about tube feeding the following link takes you to a web site, which is very good and shows all?the options available.