18 December 2009
We had a heavy snowfall overnight but woke to the most beautiful day – bright blue sky. The garden an our thatched cottage looks very pretty, a scene straight off a sentimental Christmas card, also reminiscent of my younger days on the ski slopes.
Jodie from AbilityNet was due today to give me a couple of hours training on the new computer. However, not surprisingly he arrived late  due to the inclement weather — indeed I was amazed that he arrived at all – he then informed me that he had another appointment in Chelmsford. There was no way he was going to get there and back there in time to give me a couple of hours training, so I sent him on his way in the hope that he got there and home safely and rescheduled my own training for early January.
I have received a very nice reply from Mel Barry, the communications officer for the MND Association, in connection with my comment, in this blog, concerning the TV documentary Into that Good Night. (See 10 Dec. entry)
I had sent a copy to her in advance of publication to ensure that they did not consider I was being offensive, or perhaps overcritical, of the Association. Mel told me that the MND Association  had had no input into the documentary and, in any event, did not find any of my comments offensive. As she pointed out, all MND sufferers are different and approach the disability in their own way.
I have also been in touch with the chief executive of the MND Association, Dr. Kirstine Knox, over a number of issues. Having acknowledged the kindness and generosity I have received from the Association, via AbilityNet, I did point out that I had been forced onto my own resources to ’invent’ various gadgets or devices to assist me in my daily living and suggested that an important area in which I believe the system is currently failing MND sufferers and their carers, is the the dissemination of useful practical advice on daily living. Although the MND team at Addenbrooke’s Hospital have pointed me to various publications and independent living centres, as well as referring me to AbilityNet, they have not come up with practical suggestions as to how to overcome personal problems with which one has to deal with daily. I have to rely on the local occupational therapist, who although extremely pleasant and caring, proved quite useless when it came to overcoming personal problems due to the diminishing ability to use of my hands. My suggestion is that the MND team should include a specialist occupational therapist depending upon which form of MND the patient has. It would be her, or his function, from day one to come up with practical suggestions on daily living.
I received a charming lengthy reply to my letter. On the point I made about the dissemination of useful practical advice, Dr Knox pointed out that the multidisciplinary team should include an occupational therapist (OT) who should be able to assess an individual’s needs and support them and find practical solutions to the problem. As no two people with MND are the same or have an exact same problems this should be done on a one-to-one basis. If an OT cannot find a solution they should be offering referral to Specialist Centre’s around the country that will have a  wider knowledge of equipment and adaptations of daily living. In my reply I said I am fortunate in having been referred to a multidiscipline team at Addenbrooke’s Hospital in Cambridge although the OT only appeared once and does not play an active role in my quarterly assessments I certainly take your point about no two people with MND having the same requirements but, for example, people with weakening hands and arms will broadly speaking meet the same problems, sooner or later. Although I certainly accept Dr Knox’s point that they considered employing a specialist team of OT’s but was something that is not currently viable, I still feel that the Association could at least be responsible for putting together a basic leaflet listing all the sources of information, websites, specialist centres etc as well as including a list of simple practical suggestions, covering perhaps the three broad categories, legs, hands and arms and throat. Then, depending upon which the areas of the body was affected the patient could adopt the practical suggestion or contact the Specialist Centre for advice, as and when necessary.