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My MND Journey and CBT Self-Help Leaflet

By Keith Palmer

In August 2011, I was living in Spain with my wife. I was having an active and enjoyable life when I suddenly started to lose my balance and was finding it difficult to walk. I saw a neurologist, Dr Khan, and was admitted to hospital on 1 August where I stayed for one month.

During the month I was in hospital I developed a good relationship with Dr Khan. He could speak very good English and I was able to understand everything he said. None of his staff spoke English and I was unable to understand or speak Spanish, so there was an interpreter with me every time I was examined. Sometimes we did misunderstand each other, which was quite funny!

On 1 August, Dr Khan asked me if I wanted him to be open and frank with me during every test he did. I told him I would like him to tell me the results of every test and the reason why they were being carried out. I had a long list of tests which took the month to complete. Once they had been completed, Dr Khan and his staff came into my room. Carrie, my wife, and myself sat and listed to Dr Khan and his staff going through all the test results. I asked Dr Khan if I could tell him what I thought the outcome of the tests would be. The room went quiet and I said that after spending a full month with all the staff and Dr Khan I felt as though I had worked out what was wrong with me. I said to them that I thought it was Motor Neurone Disease. They were amazed at how calm I was when accepting the diagnosis.

In 2012, we decided to return to England to be with all my family. This is the best thing I have ever done! The whole family have been great and Carrie has been absolutely wonderful!

When we moved back to England I was referred to the Salford Royal Hospital to the Motor Neurone Disease Clinic and placed under Dr Ealing and his staff. Again, such a lovely bunch of people!

October 2012 was my first visit there and I gave my record of treatment to Dr Ealing and it was decided that all the tests would be repeated again. I explained that I had accepted my diagnosis and we were getting on with our lives.

Four years after my diagnosis, all of a sudden I started to lose my speech. This was devastating for me and I quite quickly changed from a person that had accepted y condition and getting on with my life to a person that would NOT:

* Go out and meet people

* Answer the phone

* Answer the door

* Not get out of the car if I went out

* Talk or try to talk to anyone.

In fact, I became a recluse; stopping in the house and keeping myself to myself.

I developed a stammer in my speech which was not typical of MND. I started having negative thoughts and misinterpreting what people thought of me. It must have been very difficult for Carrie and my friends and family.

MY CBT INPUT

My Speech and Language Therapist suggested I try Cognitive Behavioural Therapy (CBT) and after she hand explained what it was I thought this sounded like a good idea. My Speech Therapist and Dr Ealing felt that the stammer was something I had acquired due to asynchrony between my breathing and speech and was due to attempting to mask slurred speech that had begun to occur.

CBT has helped me to gradually work towards going out and talking to people, answering the door and telephone and giving me my confidence back. I learned about how my thoughts about my speech were affecting how I was behaving and causing me to avoid social situations. I learned how to use relaxation though listening to a CD and how to change my negative thoughts into more positive ones that encouraged me to go out and talk to people rather than continue to become a recluse. Even when I had bad days, I was able to use the techniques I had learned, with the help of my Speech Therapist to think about things differently and feel better. I kept a diary of everything I have achieved to remind me of how far I have come.

After several months of CBT I now feel more confident in every way! I can talk to people, answer the phone, go to parties, shop, meet friends – in fact I feel back to my old self and enjoying life again! This is all down to CBT.

The main points to remember and take forward to the future in order to prevent my anxiety returning are to:

* Not avoid going out

* Not avoid answering the telephone

* Not avoid talking to people, even if I feel anxious

* Be assertive and tell people I have speech difficulties and need time to talk

* Give good social cues – eye contact and body language

* Continue to be active in conversations

* Stay relaxed and use soft speech.

T o remember that I can talk and participate in conversations and by not avoiding social situations I will maintain my high levels of confidence.

I know that I could return to how I was but I will not let that happen. I will continue to use what I have learned to keep my confidence levels high and continue to go out and enjoy meeting people and socialising!

We all have problems and nobody is perfect so long as we keep smiling and happy then, “what the heck...life is for living!”


A Selection of News Stories - For full details please see below:

Stories included below are: 

  • 2016 Regional Conference
  • 2016 Branch AGM
  • Digital Legacies
  • Woodside Golf Club
  • Next Year’s Captain of Mere G&CC
  • New App To Help People with Motor Neurone Disease
  • Pain-free diagnosis for Motor Neurone Disease?

2016 Regional Conference

By Hal Bailey

The North West Regional Conference was held on Saturday 2nd July at Crewe Hall, in Haslington, Crewe.

The conference was very well attended, with 87 delegates, including professionals and exhibitors and also members of Branches. Representing the Cheshire Branch were Margaret and myself, plus 16 friends and members of the Branch.

The facilities at the venue were very good, and we were treated to lunch plus refreshments throughout the day.

The day was divided into 3 sessions, chaired by Alun Owen, Chair of the Board of Trustees of the Association with ample time for networking, exhibitors and refreshments.

The exhibitors included Fresenius Kabi, Liberator and Driving Mobility, plus numerous stalls hosted by the Association covering all the services they provide. For the first time this year there were ‘drop-in-sessions’ provided by Royal Stoke Ventilation Team, ACE Centre in Oldham and the East Cheshire Hospice.

The first session on Progress on National and Regional Care was presented by Chris Bennett, the Regional Delivery Manager for the area.

The second session of the morning was given by Chris James, Director of External Affairs and Greg Broadhurst from the Manchester Branch ( who was called up at the last minute as the scheduled speaker couldn’t make it) on Raising Awareness and Driving up Standards, and Greg talked about how he got involved with campaigning and how it is so important.

The session after lunch on Update of Healthcare Research was given by Belinda Cupid, Head of Research, and Professor Carolyn Young, Consultant Neurologist and Honorary Senior Lecturer at the Walton Centre for Neurology and Neurosurgery.

Professor Carolyn Young gave an excellent update on TONiC. It is the largest study in the UK examining the factors that influence quality of life in patients with neurological conditions.

It is supported and part-funded by the MND Association. TONiC will hopefully have a significant and positive impact on the lives of all patients living with neurological conditions, regardless of symptoms, stage of illness, age or social status.

The day was summed up by Sally Light, Chief Executive of the Association highlighting the fact that the content of the regional conferences is becoming more local and that this trend will continue with future regional conferences.

To sum up, the da
y was very enjoyable. As well as being informative, it brings people together and you can exchange views with individuals you probably would not meet if it weren’t for these types of events.


2016 Branch AGM

By Hal Bailey

The 16th Annual General Meeting of the Branch was held on 10th April at the Macdonald Portal Hotel, Golf & Country Club, Cobblers Cross Lane, Tarporley.

Joel Millett, as Chairman of the Branch, opened the meeting thanking everyone for attending and welcomed Sandra Smith (a Trustee) representing the Merseyside Branch, and Lord Ashbrook, who is the Branch Patron.

Joel then presented his 6th Chairs Report identifying the successes of the previous year’s activity and to thank to all those individuals who have gone out of their way to raise funds, attend functions an
d make donations to the Branch.

In his report he thanked Marion Chadwick, who is retiring afte
r 10 years as Branch Contact, for all her hard work and dedication to the Branch and Association during that time, and wished her all the best for the future.

John Kinder then presented the accounts, and highlighted the salient features during the 12 months to the end of January.

Our speakers were Kate Bibbings, PhD student working on a pain free way of diagnosing MND at Manchester Metropolitan University who gave a presentation on the findings of the research project to date;

Sandra Smith in her role of Trustee has been leading the project on developing NICE guidelines on behalf of the Association which were appro
ved in February and highlighted the principals of the guidelines;

Chris Bennett, Regional Delivery Manager for the West, gave an insight to his role and identified the 3 main campaigns for the coming year and beyond. These being continuing the Silence Speaks Campaign, Champion the Charter, and making sure the NICE guidelines are adhered to in England and Wales.

Before the meeting broke up for coffee and cakes Mr Alan Smith spoke on behalf of the Cheshire Provincial Mark Benevolent Fund, and again surprised everyone by presenting a cheque to Hal Bailey for £1,000 to pay for the printing of our newsletter for the next 4 issues.

Amy Phillipson thanked our speakers for giving their time and delivering informative presentations, which were very much appreciated by the branch and attendees.



Digital Legacies

By Olly Clabburn

My name is Olly Clabburn and I am a PhD Researcher at Edge Hill University in Lancashire. I have a specific research interest in young people who help care for family members who have MND, and also those young people who are bereaved due to the disease.

My research is investigating the use of a ‘digital legacy’ with people who are affected by MND *. This means people with MND creating video messages and recordings of their memories and accomplishments specifically to be given to their children in their family to watch and use.
I seeking participants and will be interviewing people from the following three groups until April 2017:
People who have been diagnosed and are recording/have recorded a digital legacy for a child or young person in their family (e.g. son/daughter/grandchild/niece/nephew)

  • Young people (aged 11-24) who currently care for a family member with MND and use a pre-recorded digital legacy as a means of support.
  • Young people (aged 11-24) who are bereaved due to losing a family member from MND who are using a pre-recorded digital legacy to support them whilst they grieve.
  • I will interview between 5-10 people from each group to investigate their thoughts, views and experiences of being affected by MND and creating or using a digital legacy.

Interviews will last about 30 minutes and can be carried out face-to-face or via Skype depending on your location or preference. They will be informal, making it feel more like a conversation.

If you, or a young person in your family, would like more information or are interested in participating in the research, please contact Olly via email clabburo@edgehill.ac.uk or telephone (+44) 01695 654316.

* There are many digital legacy apps and programs available for download and use. RecordMeNow is an independent and not-for-profit organisation that assists the user in creating a digital legacy specifically to be given to a child or young person in their family. The RecordMeNow app is free to download and use from www.recordmenow.org or the Apple App store and provides prompting questions which can be modified, added to, deleted or re-recorded before exporting to a DVD or digital source.

The researcher and study are independent from RecordMeNow so any concerns you may have regarding the app can be sent directly to director@RecordMeNow.org




Lady Captain of Woodside GC

Hi my name is Sandra Jones and from January 2016 I have the privilege of being Lady Captain at Woodside Golf Club, Holmes Chapel. I took up golf from scratch about 10 years ago after my retirement.

It is a great game – fresh air – good exercise – interesting people – its just hitting that little ball thats the problem!

When the opportunity arose for me to support a charity I thought of Motor Neurone Disease.

I first became aware of MND when the actor David Niven died (one of my favourite actors at the time) in l983. Latterly I saw the film The Theory of Everything about Stephen Hawkins and a couple of programmes by Alan Titchmarsh where he had revamped the gardens of MND sufferers.

During my year I will be raising money from a Race Evening, Lady Captain's Drive-In, Swap-Its, Raffles, Book Sales and anything else I can think of! In doing this I hope to bring MND to the attention of many more people.



Captain of Mere G&CC

I am the Captain of The Mere golf club next year and have chosen the Cheshire branch of MND Association as my nominated charity for the year.


I chose MND because my wife`s first husband, Terry, who she was with for 30 years, was diagnosed with MND in 2005 and Rosalind cared for him for 5 years at home before he died in 2010

I am particularly interested in raising money to support the carers. Together with Joel, Hal & Margaret we will be looking at ways where we can improve the respite care facilities in Cheshire.

Throughout my year we will have various fund raising events. I have Captains Challenge matches most weeks where I and a partner take on another pair for 18 holes of golf in a match play better ball format. My opponents make a contribution to the charity and increase it if they lose!

I have organised a captains charity day in July where we have a team competition with a small entry fee for each team and a Sportsman’s Dinner in October with comedians and after dinner speakers where we hope to raise most of the funds through an auction on the night.

In December we will also be having a Christmas Party for all golf members where we will have a raffle that will raise more money for both my and the Lady Captains charities.

I am greatly looking forward to my year and Rosalind and I will be doing our best to raise as much as possible for this very important area of MND support.




New App To Help People with Motor Neurone Disease

By Peter Pierce

When I was first diagnosed with Motor Neurone Disease in 2008, I realised that eventually my voice would deteriorate to a point when I would lose it completely, and require a synthetic method of speaking. Although I accepted that I would need something, I did not want a robotic, Stephen Hawking type voice. Ideally, I wanted MY voice!

So with my background in research and development, I started to investigate voice banking whilst I still had a voice. I managed to find a research project at Colorado State University in the USA, who after some persuasion agreed to accept their first overseas participant on the project.

I then spent the next six months recording on special software something like 800 phrases, and many different words and sounds. From the resulting database, the students at Colorado built my voice, which was difficult because not only was I the only Brit, but I also had a strong Shropshire accent.

So I had a voice ready to use on a Windows based application, which I didn't have, and couldn't find one that would be compatible. I wasn't particularly concerned at that time because my natural voice was still OK.

This changed last year when I started to have difficulty speaking, and found an application called Predictable, which cleverly would predict whole words as I was typing the sentence I wanted Predictable to speak. However, this application would only run on Apple products, and my synthetic voice required Windows based software.

I was really happy with Predictable, and didn't really mind using the default application voice. Then in May this year I received a joint email from Therapy Box the developers of Predictable, and the developers in Colorado, who since my contact with them had named their voice banking software Model Talker. As I was using Predictable, and six years earlier had banked a real voice with Model Talker, they asked if I could test a Beta version of Predictable with the ability to use an actual voice that has been banked and created.

I of course agreed, and following one or two minor problems, Predictable is available from this weekend, in the latest release (Version 4) to people who when first diagnosed, can record their healthy voice, and from that recording a digital but unique voice is created for a time when natural communication becomes impossible.


The release of an App I have been using and testing, which can help people like me, who have difficulty speaking has now been publicised on Sky News,and if you want to watch a short clip then please clikc on the following link http://news.sky.com/video/1364678/app-gives-voice-to-mnd-sufferers


Pain-free diagnosis for Motor Neurone Disease?

The Branch has donated £20,000 to a novel research project investigating a pain-free way of diagnosing and monitoring the condition.

Committee members from Cheshire and the neighbouring Manchester branch - who have also donated £13,534 towards the project - visited the School of Healthcare Science at Manchester Metropolitan University to find out more about the plans.

The research will explore ways of detecting if someone has MND using ultrasound scans rather than the current technique, which involves the use of painful needles. The donation will help fund a PhD student to work on the three-year project, which was selected as one of a handful of outstanding projects, following a national research funding competition run by the MND Association.
The aim of the research, led by Dr Emma Hodson-Tole, is to develop a pain-free procedure for early screening of MND

Such a system would also provide a more detailed way of monitoring the condition, help improve understanding of the disease’s progression, and aid the testing of any new therapies that become available.

Dr Hodson-Tole, a reader specialising in neuromuscular mechanics and physiology at MMU, said: “A diagnostic process including ultrasound imaging of the muscles could make a significant contribution to improving patient experience, because the needles currently used are uncomfortable.

"An image-based screening process could also help people to be diagnosed quickly, giving them time to put their life goals in place.

“They will then have more time to complete activities they want to and it will benefit families and friends as well by letting them know what the problem is rather than people suffering from undiagnosed symptoms.

“Earlier diagnosis also has implications for future clinical drug testing, as it may be possible to
perform trials sooner rather than later in the disease process.”

The funds donated by the Cheshire branch have been raised through various activities across the region and with the generous support of local people over the past 12 months, including the hugely successful Eaton Hall Gardens Charity Open Day in Chester in July.

Committee newsletter editor and web master Hal Bailey, who has MND, and his wife Margaret - who is also a committee member - visited the research laboratories with Joel to find out more about the project.

Hal, from Knutsford, said: "Having experienced numerous tests over the two and a half years it took to get a diagnosis, anything that gets rid of the ‘uncomfortable needle test’ and reduces the time for a diagnosis must be supported.”

Joel Millet, committee chairman, said: "The Cheshire branch is here to provide support to those affected by this awful disease in the local area.

"We do this is many ways - from organising support group sessions, to providing financial assistance to pay for special equipment that might be needed. We are also committed to helping fund research into the condition to improve the experience of patients and their families, and provide hope for people now and in the future.

"When we heard that such an important study was taking place so close to home in the North West we decided it was the ideal project to support with funding this year."

The initial research carried out by Dr Hodson-Tole and colleagues in the Faculty of Science and Engineering has already earned the academics an award at an innovation showcase at Preston Royal Hospital - their clinical collaborator in the project.

Now, with the help of the funding from the MND Association, they are looking forward to making further progress in this area.

Dr Hodson-Tole said: "At this point we have developed preliminary techniques based on ultrasound images we collected from a small number of people who have been diagnosed with MND.

"We plan to further test and improve these techniques once we have collected images from a larger number of people with the disease.

“MND is a disease that causes a loss of cells in the spinal column, particularly the motor cells that link to the fibres in the muscle. When that connection is lost, there are involuntary muscle twitches.

“Scientists have previously collected ultrasound images of these muscle twitches before, but their assessment has been based on manual observations, which is very subjective. We want to provide a more objective and quantitative approach which we believe will become a very valuable tool for healthcare providers.”