26 March 2009
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.
Consultant report.
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.
Management plan
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.