Annual MND Conference 2015

20 Years of MND Care and Research – Do things really change??

The Annual MND Conference was held at King?s College Hospital on Friday 12 June 2015. As it is now 20 years since MNDA has been funding King?s College Hospital MND Clinic, many presentations compared how things were in 1995 to now. One or two points from an information packed day (more should become available as post- conference summaries are released):

  • Research undertaken in different countries now to use the same methodology as previously some research was incompatible with that carried out elsewhere.
  • A National MND Register ? mapping people living with MND, resources, etc. E. Kent is hoping to be part of this research.
  • Bio-marker study underway to find physiological reasons prior to symptoms/diagnosis and also to help with interpreting results from clinical trials.
  • One approach to screening for respiratory muscle weakness ? sniff nasal inspiratory pressure. This is now considered an improvement on Maximal Static Pressures which, though also portable, can prove difficult to make a good seal around the mouth piece as the disease progresses.
  • Ethical issues around Tracheostomy Assisted Ventilation were discussed. Recent thought is that NIV + Cough Assisted could produce the same length of life as TV.
  • Voice and message banking – important to do this whilst speech is still clear. The process records a large inventory of speech or favourite messages that are then used to create a synthetic voice that approximates the normal voice. This voice can then be used on a communication aid later on. However, this is a lengthy and tiring process. Software is free ? currently available is (post-conference information suggests that later technology has been developed where a voice similar to the pwMND?s voice can be merged with a few spoken words of the pwMND to form an inventory of speech/messages.)
  • Current research is looking at a 6-step process, e.g. 6 hits before MND manifests itself. Thus, genetics forms step 1 and the following 5 steps/hits from environment, lifestyle, etc., lead ultimately to MND. A reason why a large proportion of pwMND are in the older age range. More now needs to be known about the ?steps? and how these can be identified and prevented.
  • Sheffield Support Collar ? this newly designed collar, especially for pwMND and which was announced at last year?s conference, is now at the trial stage and there is a request for 100 people with MND and experiencing some degree of neck weakness/pain to volunteer for this trial. (MND Connect could, hopefully, refer possible volunteers)
  • There is a new internet resource, myNIV, written by pMND and their carers/families to help others by sharing their NIV (Non-invasive ventilation) experiences.


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