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28 February 2008

Posted by DMC on 28 February 2008 in Diary |

On 28 February I flew off to Australia, determining to enjoy life while I could. The future was clearly pretty bleak. I stayed with my dear old friend (Dr.) Michael Long as well as spending a few days with some other old friends in Barwon Heads – Geoff. and Anne Waite.

One day, during this trip, I was invited to play golf at my old club, Kingston Heath. I was terribly excited about the idea having been a member there 50 years or so earlier.

Sadly it turned out to be a disaster. Not only was the temperature almost 40°C but after nine holes I was in such agony, from the pain in my groin that I could not move without severe pain. I spent the next hour sitting in one of the many wooden shelters on the course before I could comfortably move back to the clubhouse. Whatever the doctors say, hernia or not, there is something seriously wrong.

Apart from Michael being astonished at the violence on the fasciculations in my thighs there were no other medical ramification during this visit.

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20 March 2008

Posted by DMC on 20 March 2008 in Diary |

The neurologist wrote to Professor Leigh, at Kings College Hospital, and said inter alia:

“My 15th February examination revealed widespread fasciculation’s, bilaterally in the upper body and in the thigh, but to a lesser extent.

His neorophysiology demonstrated widespread ongoing denervation with fasciculations including the axial muscles. I have subsequently discussed the findings with (a colleague) who confirmed the findings. Whilst the most likely diagnosis is motor neurone disease, I recommended found the investigations to exclude other diagnoses

On cranial nerve examination, the palate moved freely. There was no fasciculations of the tongue. Time strength was intact. There was no evidence of any bulbar abnormality. His neck flexion was 5/5.

He has wasting also need deltoids bilaturally and on the left biceps and triceps and to a lesser degree muscles of the left forearm. On examination, he had weakness of shoulder abduction,4 on the left, 4+ on the right. The right arm was otherwise normal with the left arm grade 4 triceps and biceps the left hand was globally 4 again. Infraspinatus and supraspinatus were 4 on the left. Reflexes are+ throughout. Sensation is intact. In the lower limbs, there was a hint of weakness of left hip flexion. The rest of the appeared intact. Reflexes were present in, the knees, absent in the ankles. Plantars were going down. There was a reduction in vibration on the right to the ankle but intact to the left. Pinprick was intact. Chest examination was normal with good diaphragmatic movements. Abdominal examination was unremarkable and there was no hepatomegaly.”

It was as a result of this that I had the MRI scan, the lumbar puncture and blood tests.

The neurologist concluded his letter to Professor Leigh by recording that he had seen me and Alice on the 21st February and confirmed his belief that the diagnosis of Motor Neurone Disease was firm.

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10 April 2008

Posted by DMC on 10 April 2008 in Diary |

Alice joined me in my consultation with Professor Leigh at Kings College Hospital. I must say the Professor was very charming and gave us two hours of his valuable time.

He agreed with the diagnosis of MND and said, encouragingly, that there was no definite upper motor neurone signs… which is the case in 10 -20% of patients presenting with MND. He wondered whether I would develop “flail arm” syndrome, which often spares the cranial nerves and the legs, for many months, or even years.

I suppose I was meant to take these comments as encouraging. In other words, although I might lose the use of my hands and arms I could live for some considerable time in this helpless state!!

Whilst generally confirming the neurologist’s diagnosis, Professor Leigh concluded that he saw this as a lower form of MND , not strictly speaking falling within the rubric of amyotropic lateral sclerosis (ALS)…. Lower MN do tend to be associated with the better prognosis, and of course, he has no evidence of respiratory muscle involvement, also indicative of a better prognosis.

He referred me to an MND support unit at Addenbrookes Hospital, in Cambridge.

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21 April 2008

Posted by DMC on 21 April 2008 in Diary |

I was admitted as a day patient to Bury Hospital, for a nerve block in my neck. Not a very pleasant procedure but hopefully it will sort out my neck pain.

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15 May 2008

Posted by DMC on 15 May 2008 in Diary |

I made my annual pilgrimage to Cyprus where I have taught for the lost 10 years or so. This time I gave my lectures to the local technical Institute (ETEK) as well as addressing the Cyprus branch of The Arbitration Club.

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21 May 2008

Posted by DMC on 21 May 2008 in Diary |

I had my first consultation today with the Cambridge MND support unit. A nice Dr. Chris Allen, heads up the unit with a charming and helpful support nurse co-ordinator, Joanna.

Dr Allen noted the increasing weakness in my hands and arms but observed no sensory symptoms or problems with speech or swallowing. He did however observe a degree of muscle wastage. In the interests of research, he very kindly agreed to prescribe Riluzole in addition to that which I already receive from my GP, which meant I could take a double dose, although the evidence as to whether this is likely to be beneficial is sketchy.

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23 January 2009

Posted by DMC on 2 January 2009 in Diary |

Back in November when I was getting really worried about by weakening hands and wondering how on earth I would manage to operate my artificial urinary sphincter, I dreamt up the idea of a bionic glove. The purpose on this glove would be to give me a ‘grasp’ once the strength has gone from my hands.

Pursuing this idea, I contacted a medical professor in Cambridge but he was more in the experimental medicine field than robotics. He suggested I tried the Bath Institute of Medical and Engineering but here again this wasn’t quite their scene. However, the director of operations was very helpful and mentioned the name of a professor at Washington University, USA, who is apparently the world expert in exo-skeletons.

It took me a couple of months to contact this professor personally but once I did she expressed a degree of interest. She has undertaken to put the idea to one of the non-profit sponsors, hopefully within the next few days. If she gets a positive response then hopefully she will do attempt to develope something for me quite quickly, knowing that I’m living on borrowed time with my hands.

Because everyone’s hands are different and she was concerned about the glove fitting properly, I scanned, back and front of both hands and e-mailed the pictures to her. I think he was amused at this rather unorthodox form of communication.

I am holding my breath for a positive result as this could be a very exciting development which will not only help me but others with medical conditions which result in weak hands.

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May 2008/January 2009

Posted by DMC on 20 January 2009 in Diary |

I went on pretty much as normal over these intervening months but with progressive weakening of my hands and muscle wastage of the arms. Both hands were very weak with the right-hand fractionally stronger than the left.

I could no longer manage buttons or zips or any action that required the use of my forefinger and thumb together. For example, I could not manage to lift a heavy file with either hand. I sometimes had to ask a shop assistant to help me remove my wallet in order to pay for a purchase. On one occasion I asked a policeman if he would be kind enough to tie my shoe lace which had come undone in the London Underground. All of this was extremely frustrating as it was not only a weakness of the hands but also an overall body weakness which did not auger well for the future.

Having said that I did manage to go to China in October to deliver my annual lectures to CUPL and enjoy a week, on the way home, in Hua Hin, Thailand, in the company of my doctor friend, Michael Long. In the week before the lectures I went on a mountain trek in southeast China and on one occasion found myself stuck at the top of a mountain faced with a 7.5 K walk down, while suffering from extreme pain with what was ultimately diagnosed as a hernia under the pipe work of my artificial urinary sphincter. This was successfully operated on in November prior to a fortnight with my good friends the Brinton’s in Dubai.

In December I played my last game of golf at Royal Worlington as my hands could no longer sustain the weight of the golf club. I resigned as a playing member after 32 years – a very sad day.

Over the intervening months I have been very fortunate in establishing a good relationship with the mechanical engineering division at Addenbrookes Hospital where we have worked on a number of gadgets to assist me to lead a near normal life. I designed a remote-controlled electronic device located on a thigh strap to operate the control pump, of the artificial urinary sphincter (AUS) in my scrotum. In working with the engineers, on developing this device, I managed, through clumsy handling, to knock out the control pump of the device (AUS) altogether. In other words, I found that it was permanently open. This was very alarming as I then expected to find myself incontinent and faced with the prospect of having to resort to leg bags again. The day on which I discovered this I went to bed, having put a rubber sheet on the bed, wearing a nappy overnight. I was pleasantly surprised in the morning to find that I had not leaked, as I thought I would. The following day I wore normal underclothes with no protection and again, no significant leakage.

It seems that a minor miracle had occurred. The medical explanation was that the artificial urinary sphincter was acting, in conjunction with my own pelvic muscles, and retaining the urine. As I write this state of affairs has now prevailed a couple of months and I pray will continue. The point being that my hands are so weak now that there is no way that I could grasp my scrotum in my left hand, locate the control pump and operate it by squeezing it with my right hand.

Without this miracle I simply would not be able to venture far from home, as I would require assistance to go to the lavatory. There are clearly limits on what you can asked even your best friends to do for you. I can see the headlines now, Professor arrested after a accosting stranger in public lavatory.

What of the future? I’d now deeply into finding gadgets to enable me to lead as normal a life as possible. The MND support unit has said that I may lose control of my hands altogether within two or three months, followed by my arms.

Heaven knows how I will manage when I reach that stage. I am already looking at gadgets to help me continue to use my laptop as well as ways of continuing to feed myself, although even this may ultimately prove impossible. Will this mean I can no longer attend meetings of the Arbitration Club, in London, for example, or will I get my colleagues to feed me?

One problem I have solved is how to deal with wiping my bottom when I no longer have the use of my hands. I have found a foot operated unit, that can be fitted on top of my own lavatory pan, which will initially wash my bottom, after I had done my business and then gently dry it with warm air. At least I will be spared the indignity of reverting to babyhood in that area.

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5 February 2009

Posted by DMC on 5 February 2009 in Diary |

I heard a few days ago that the Washington professor has formed a non profit making company, XXWorks, to develop ideas such as my bionic gloves which are to be one of the first projects. A team leader will be in touch.

I heard from a young lady today, who appears to be the project manager for XXWorks for my gloves. She has two other girls in the team.

She says that they are thrilled to be working with me on one of these first cases for XXWorks. She wants to talk over the Internet. I had told her we could have a videoconference from Australia.

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9 February 2009

Posted by DMC on 9 February 2009 in Diary |

Off to Australia, to stay with the same friends as last year and then onto Thailand, with Dr Long for a week, on the way home. Apart from requiring some assistance with dressing, provided my hands do not significantly weakened further during these intervening weeks, I should manage. After that I can only take it week by week. There are a lot of people out there willing to help, – occupational therapists, computer experts the MND Association, etc. but at the end of the day, much of it will be down to me personally.

In the meantime I have been busy designing gadgets which will not only help me but also other people with weak hands – arthritis sufferers, stroke victims, people with Parkinson, etc. My latest idea is for a feeding frame which can be very inexpensively mass-produced and, which I believe, will be of great interest to hospitals, care homes etc. or to anyone having care of infirm geriatrics.

While I was in Australia I had a videoconference with my team leader of XXWorks and she appeared to be very enthusiastic and encouraging. It is an exciting project.

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