Category Archives: Carer’s Corner

These pages are for carers, containing stories about problems, solutions and general support

Support Meeting 14th October Thanington, Canterbury

We had a good attendance at our latest monthly support meeting which was held at Thanington, Canterbury on October 14th.

We heard a presentation from Dawn Cockburn and Julie Murby of the Harmony Therapy Trust.  A charity who provide NHS approved therapies to patients living with life limiting or debilitating diseases, including MND.

Dawn Cockburn addressing the meeting

We heard that Harmony Therapy Trust is run entirely by volunteers.  The charity is based on the Isle of Sheppey however, they have expanded their services to cover the whole of Kent.

The charity can provide up to 6 sessions of therapy to persons who would be expected to benefit from the therapy.  Therapies are only provided following medical referral.

Harmony Therapy Trust can provide a range of therapies including acupressure, aromatherapy, counselling/talking therapies, healing/reiki, holistic massage, hypnotherapy, ibx nail treatment, indian head massage, osteopathy, reflexology and reflexology lymphatic drainage.

We would like to thank Dawn and Julie for an excellent presentation.  You can find out all about the Harmony Therapy Trust at their website http://theharmonytherapytrust.org.uk

Should you feel you might benefit from a therapy provided by Harmony Therapy Trust, please contact a medical professional such as your doctor or MND nurse who will need to complete the application, which can be found here http://theharmonytherapytrust.org.uk/files/5314/9949/9161/2017_REFERRAL_FORM.pdf

Clive with the two awards

During the meeting we were able to exhibit the KM Charity Mark earned by MNDA East Kent for 2017. The Charity Mark was presented to 50 local charities who have made a substantial contribution in Kent.

Clive Hudson was also awarded a Brain and Brawn Triathlon Award for participating in a minimum of 3 KM Charity Team events in 2017, raising money for the MNDA in East Kent.

Clare Rozier starts her silence Tonight, at 7pm

On Sunday 15th October at 7pm until Tuesday 17th at 7am I will be doing Silence Speaks in memory of my amazing Dad (David Ironmonger).

David Alan Ironmonger

My dad was such an amazing man, always smiling, loved life and everybody loved him. In 2016 Dad was diagnosed with MND, which was a great shock to himself and the family. Over the year Dad lost control of his legs, arms, couldn’t feed himself, and it got so exhausting for him to talk. He had carers 3 times a day to hoist him out of bed, wash, shave, brush his teeth, etc. 

My Mum, Brother,  Husband and myself  would also help with his care. We would take him out in his electric chair and mobility car so he could enjoy the places he loved to go and see. My dad was so brave and battled through this cruel time and would always be smiling. 

Sadly on July 16th 2017, Dad lost his battle to this cruel disease. Myself, brother and my mum were all by his bedside when he died, and he would still try and smile right to the end. 

I miss my Dad so much and think about him everyday.  

I am doing this as I have a CHOICE too.. My Dad Never had a CHOICE. 

I would love to be able to help someone else with MND by raising money. 

I so wish there was a cure for this wicked and cruel disease.

Please support me by visiting www.JustGiving.com/clare-rozier1 donating what you can afford to help people living with MND. 

Thank you for reading and huge thanks to all donors.

Clare Rozier

To find out more about Silence Speaks please visit https://www.mndassociation.org/get-involved/fundraising/doyourownthing/silence-speaks/

Support Meeting Tea at Strode Park Foundation

We were invited on Sunday August 6th to visit Strode Park Foundation for tea and a walk around parts of the house and the grounds.

There were 12 of us attending and we enjoyed a fabulous tea of sandwiches, scones with jam and clotted cream and a selection of cakes.

John Cotterill addressing our group.

The sandwiches, scones and cakes were prepared at Strode Park by ??, all were beautifully fresh and delicious.  The tea was served by Anthony who thoroughly spoiled us.

We were shown around the grounds, Daren found a lake with a no fishing sign, which indicated to him there would be something worth catching.

The open air auditorium is a fantastic facility with every part accessible by wheelchair, we were invited to look at the website Strodeparkfoundation.co.uk to find out about concerts and booking them if we wished.

We were shown around non residential parts of the house, including the gymnasium and the hydro therapy pool, which is available to people living with disabilities including MND.

Daren looked up to catch this image of our group – most of us missed it!!

Huge thanks to John Cotterill who showed us around and to ?? and Anthony for making the tea so special.

We have been invited to have tea at Strode Park at some future date and we are welcome to attend any public events held at the Foundation.

 

 

Spike is no ordinary cat.

Spike

This month he has been raising awareness of MND and Kennedy’s Disease as he is a finalist in the National Cat of the Year. He is in the Better Together category where it is all about how he and his owner, Mark Styles look out for each other.  

http://www.itv.com/news/meridian/update/2017-06-07/why-is-this-loyal-feline-friend-up-for-a-national-award/ 

Spike, a 17 year old ginger and white moggy has been in the local paper -the Kentish Gazette, videoed and photographed by Cats Protection and on the local news programme – Meridian. 

Spike’s category is one which is decided by a public vote, so if you would like to vote for him after 30th June go to the www.facebook.com/catsprotection 

Winners will be announced on 3rd August at the Savoy, London.

 

 

Benefits advice service

Benefits Advice?

Following our successful pilot work we have now established a benefits advice service for people with and affected by MND in England and Wales. The service is available by telephone, e-mail and webchat*.

Telephone:??????????????? ??????????? ??0808 801 0620 (free to call)

E-mail and webchat: ??????????? www.mndassociation.org/benefitsadvice

The service is provided in partnership with Citizens Advice Cardiff and Vale and will:

Help users identify the benefits they may be eligible to claim and how best to claim them

  • Deal with complex benefits issues, including appeals against benefits decisions

Welsh speaking advisers are available on request.

*The telephone and e-mail services are available from 24th Apr 2017, the webchat service will go live later in the week.

You can either contact the service on behalf of your patients or simply suggest that they or their families/friends contact it direct.

As part of the development of the service we are looking at how best we can help people who cannot use the phone, e-mail or webchat complete benefits applications at home and how we can make the service available to people who do not speak English or Welsh.

 

Mark Styles is Curator for the NHS Twitter Feed this week.

Quotation taken from NHS Twitter Feed

“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.”

Mark Styles – April 2017

Follow Mark at https://twitter.com/NHS

See marks NHS Curator Profile at https://www.england.nhs.uk/atnhs/curator-archive/mark-styles/

Volunteering: In your words

Reprinted from MND Association Web Site
Campaigns Contact ? Katy Styles of MNDA East Kent

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.

Support Meeting – Flying Horse Boughton Aluph

Following a fabulous meeting at The Flying Horse, last November.

We will have our next support meeting at this superb venue, on Saturday 11th February.?? The meeting will start at 11.00 and run until 13.00.

The Flying Horse, The Lees, Boughton Aluph TN25 4HH.

Full details?here?and??Directions here.

The Flying Horse has an excellent restaurant if anyone wishes to stay and enjoy lunch.

Bill Ashby RIP

William Ashby? 15/04/51 -21/11/16.

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.

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Follow this link to see the burning rubber send off https://www.facebook.com/royashmr2/videos/10154667174961101/