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 â€˜graspâ€™ 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.
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.
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 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.
Received the following e-mail from the Washington professor today:
Sorry to take forever to get back. I totally understand and wish we can take this opportunity. If I had more resources/time on my hand, I would. I think your idea is wonderful and you should not give up on pursuing it with some British folks who may be able to help. There is a wild guy who calls himself Cyborg in the UK (I am off-line typing this at a park so can’t Google and find his info) who may be able to help you with this type of requests.
I will now have to pursue the Oxford professor connection before trying Cyborg (whoever he is).
I had to go into Saffron Walden this morning to have my eyes tested as the glasses l bought from Glasses Direct were not satisfactory. I drove myself but I really think my driving days may be coming to an end. I am O.K once I’m on the open road with my automatic, as my hands curl round the steering wheel and I can control the car. However, I struggled for over five minutes trying to plug in the safety belt before eliciting the assistance of a passer-by. I then had trouble turning the key in the ignition. All very frustrating.
I rang the District Nurse today and asked if there was someone who could come and cut my fingernails. I was told that although the NHS provide a free toenail cutting service they do not cut fingernails and that I would have to make a private arrangement. OK I can afford to pay somebody but what about other people on a fixed income who cannot afford to pay?
The District Nurse agreed with me that this was not a satisfactory state of affairs but that was a situation and there was nothing they could do about it. I think this is scandalous for poor people and therefore will raise the matter with my MP, Alan Hazlehurst.
In the meantime, having had this conversation, half an hour later the District Nurse rang to say that she had found someone who would pop in tomorrow to cut my nails for me. However, that does not solve the long-term problem for other people, so the MP will still get my letter.
I rang the Professor at Reading University again today about my bionic gloves. He explained that the problem is, to fund a research student for three years could cost up to half a million pounds, which, of course, is totally out of the question. In any event heaven knows where I shall be in three years time. The alternative is to find a Masters student who would make this the subject of their dissertation but unfortunately this process could not begin until next Easter. Again, an unsatisfactory time frame. In the meantime therefore I am seeking some charity who would fund the R&D for these gloves which undoubtedly would have universal appeal and be a great. benefit to mankind. Any suggestions of a charity, or philanthropists, from my readers would be welcome.
We received a very welcome telephone call from Richard today. He has been released from hospital with a relatively clean bill of health. At least that’s his version of it! (Theyâ€™re a tough breed these old naval types). We will just have to keep our fingers crossed (and everything else!)
Jodie, from AbilityNet, came today to instruct me in the further use of voice activation on my laptop. I really must try to avoid the temptation of using the one finger that still works and see if I really can carry out the whole process by voice. He also set up my Sony E reader which will be fine as long as I can still press the buttons.
However, I gather that there are a number of new types of E-readers coming onto the market in the next few months which, hopefully, will be able to be operated by voice or foot.
Speaking of gadgets I have certainly not given up on the idea of my own feeding device or bionic gloves. I have been given some new contacts through the Disabled Living Foundation and at least one of these is looking promising.