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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 my 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!”

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