Returned home today having had a great time. I managed, just, with Michael’s help and some understanding stewards on the aircraft.
Apart from resigning from the golf club I have also resigned from my last arbitration. It was a very heavy case and likely to go on for some months. Being unable to write legibly, without great effort, I could see no way that I could run a hearing with two heavyweight lawyers appearing before me. It’s not so much a question of giving up as readjusting. I am, after all, approaching 75 so I suppose that it is no shame to want to take things a little easier. As President of the Arbitration Club I shall continue to attend lunches in London as long as I am able to adjust my dress after going to the lavatory. I’ve had 40 pairs of trousers fitted with Velcro, instead of buttons and clips, and fitted my zips with key rings.
At least, to date, despite continuing violent fasciculations, my legs are still working perfectly well and I’m able to walk several miles at a time. I am now well over a year since diagnosis so it doesn’t look as though I’m going to expire in the average 14 month timescale.
(Indeed, one doctor said that fasciculations were observed in a medical check-up as far back as 2005, so it may well be that I am already some years into the disease although it did not manifest itself until 12 months ago.) Anyway, I was told that one in 10 MND sufferers can live for 10 years, so I told the doctors I would take that option! So we will see.
Grave disappointment. I received the following e-mail today from the Washington professor abandoning my bionic glove project.
I heard you spoke with Jenny. Thank you for explaining to us about what we are thinking about.
After evaluation with the team, we have come to a conclusion that your case is not possible for us to work on at this stage of the company.
We feel we can build a system, but we cannot build it without meeting with you in person several times here in Seattle, to fit it. Human hands are amazing in that they are all so different and any materials you can send us (photos, videos, molds, etc) just won’t to it.
You sound so motivated and full of ideas, and we feel bad that we are unable to work on your problem at this time. I know Jenny has recommended a UK based company and I have a feeling that while they may not be able to build as sophisticated a device as we may be able to, UK local folk are the only people who can provide you the solution right now.
Good luck and I hope you find a great match with a UK company.
I wasnâ€™t ready to give up so easily and replied:
Upon reflection overnight I wonder, with the greatest respect, whether XXWorks may be missing an opportunity to launch itself with a device which would have universal appeal and therefore attract universal praise.
I say this because I wonder whether your team leader really grasped the simplicity of my idea. Any failure in this direction must be entirely down to me. My enthusiasm for the concept is such that I automatically assume others will understand what I’m talking about.
Bear with me when I say that the device does not depend on the precise nature of individual hands. What I had in mind was a double skinned glove. Three (or perhaps five) sizes fitting all. It is not a scientifically crafted instrument but merely a glove with a small pressure operated motor in the palm which curls the fingers from the knuckles.
In other words the curling effect could take place whether or not there was a hand in the glove merely by pressing on the palm. The user would merely have to find a close fitting pair of such gloves.
So, in order to develop the idea we would start off, in my case with a close-fitting lightweight cotton glove, which I would fit and send to the team leader. Onto that glove will be sown the eco-skeleton. I pointed out to the team leader an articulated rod and knuckle ortho. wrist support which she could probably use as a starter. I suggested to her that she got an orthopaedic salesman to visit her who would, no doubt, be happy to supply such a support in the interests of science and, perhaps, future sales if the gloves are a universe of success.
Having sown this exo-skeleton onto the first lightweight glove the only development which would need to take place is how to get it to curl at the knuckles with a small pressure operated motor in the palm. Not rocket science, I think you would agree. There are many miniature medical motors which could probably be harnessed for this purpose. I anticipated that quite a lot of power would need to be available for this motor and suggested to the team leader that a string of batteries could be embedded in a high wrist band which would have the added advantage of giving a additional support.
The finishing effect would be to fit an outsize cotton glove over exoskeleton. So we end up with it being sandwiched between two gloves. I reiterate, I do not believe we need a bespoke glove but one which would fit all.
I Implore XXWorks not to lose this unique opportunity to make medical history.
I did not receive a reply so must seek an alternative.
I had a â€˜remote assistâ€™ call today with Abilitynet, the computer assistance arm of the MND Association. The senior assessor, who made the call, was extremely helpful and will be sending me some aids to improve my use of voice activation. She is now â€˜on the caseâ€™ and as my hands grow weaker will provide all the assistance I need so that I can continue to work.
I should also mention that I received a call from Steve White, an MND sufferer himself and regional organizer on the charity side. The MND Association are very good about checking up, on a regular basis, with their members, just in case there is something with which they need assistance. I’m very grateful.
I had my quarterly assessment with Dr. Allen and his charming support nurse, Joanna Sassons at Addenbrookes today. I asked the doctor to take an educated guess as to when I’m likely to lose the use of my hands completely. He thought perhaps six months for the left-hand, and shortly after that the right-hand.. I asked whether he could confirm that I was suffering from flailing arm syndrome and he said that he believed that I was. He guessed that I would lose the use of both arms with his 12 -18 months.
Legs seemed OK and Dr. Allen was sanguine that it would be a few years before these would be seriously affected. Similarly my diaphragm was okay therefore no breathing problems at present.
I discuss the various research projects which are being carried out at present or the results of which have been recently publicised. In particular, the effect of the protein Nrt2 on MND patients. The results of an American study were published on the 10th December 2008. Unfortunately it is early days yet as to whether this protein will assist MND sufferers. The researchers concluded that “if we can find drugs that can activate Nrt2 to a high-level we could potentially have an extremely potent therapeutic for neurodegenerative diseases”. So not much hope there in the near future.
We next briefly discussed the research into the therapeutic qualities on the Lithium for MND sufferers. I had a copy of the paper The Lithium ALS Worldwide Study: Six Months Update, published November 16, 2008. the key points of which concluded that contrary to the findings of the Italian study (Fornai et al), lithium alone or lithium plus riluzole was not found to be effective at slowing the progression of ALS over the six-month study period. The report continued “based on these results we find that low doses (150 mg/day) of lithium might be used primarily for the relief of painful cramps, but that lithium should not be recommended for most ALS patients”.
Finally, I raised the question of stem cell research of which there appears to be quite a lot going on. Whilst the earlier research reports are encouraging it is clearly still very much early days in this technology. In effect laboratory researchers are just learning how to encourage stem cells to develop into living motor neurons, providing a unique resource for studying them. This month has been a breakthrough in the creation of induced pluripotent stem cells (iPS) from adult human skin cells which could speed the research. Undoubtedly there will be some breakthrough in the future but whether it comes early enough for me is questionable.
One good thing to come out of the assessment was that Dr. Chris Allen, learning of my disappointment over the bionic gloves, very kindly offered to put me in touch with a professor in Oxford who he thought might be interested in developing the idea.
In the meantime, on the general front, I must say Alice she has been absolutely marvellous. Almost daily she turns up with some new piece of equipment or gadget to make life easier for me – a foam rubber armchair, to making easier sitting up in bed; a special tilt top tray to hold my book; a new lightweight dressing down as the old one was too heavy for me to lift; and so on.
I am obviously going to have to rely that can do to help my book while I’m reading in bed heavily on her over the next few months. I could not have a better nurse.
I received the following report of my recent visit to the MND support unit, a few days later.
Professor Cato is slowly getting worse in terms of function in his upper limbs especially the left arm but the right is also declining in function now. His lower limbs on the other hand are functionally normal as are his bulbar muscles.
He mentioned various interesting aspects of his disease that I am going to look into for him but all in all he is coping very well with his progressive disability although obviously getting a bit pessimistic about what life will be like without upper limb function.
We will keep him under review and the report from the MND care team follows below.
Decline in arm and hand function. Computer access more difficult .
Contact has been made with Ability Net for computer access assessment
Basic hand splints provided by Physio to trial for wrist support. -Dr Allen advised not worthwhile cutting Dubitrons.
Leg cramps – start on Quinine Sulphate
Phlegm to back of throat – if this becomes more problematic a suction unit can be order via the MND association tele: 08457 626262 on loan (District nurses please assist with demonstration and supply of disposables)
Psychological support can be accessed if needed via local hospice service – Prof Cato to contact coordinator if referral required.
Three useful gadgets arrived today on permanent learn from AbilityNet. A carrot shaped vertical lever mouse with a left kick button on the top. Pretty easy to use and certainly easier than my built-in laptop mouse.
There also appears to be a foot controlled version with which I’ve yet to get to grips. They also sent me a nice web cam which will, no doubt, make it easier for my â€˜remote assistâ€™ video conferences. All very generous of the MND Association. They have also promised – but yet to arrive – an e-book. I believe it initially contains 160 classics or most popular novels.
I’m getting really excited about that because I’m finding it more difficult to hold books and turned over the pages, which makes what should be the joy of reading irksome.
A good thing to come out of the â€˜remote assistâ€™ conference with AbilityNet was the encouragement and assistance given to me in utilizing my voice activation programme (Dragon) more effectively. Over the years I’ve been quite lazy in combining manual with voice activation. Now I must train myself to do as much as possible and, in the end, everything by voice.