Motor Neuron Disease (MND)- Status & Blog

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By Chris Allsop (BSc Hons) - High Technology), Apr 13 2018 04:01PM

2015 April 28 MND Patient diagnosis. 2015 MND progress occasional tripping & falling - able to use walking sticks then 4 & 3 wheel walkers.MND progressed slowly from left foot twisitng the left foot to outside & then up the left leg. 2017 June MND progressed slowly from the right foot twisting the right foot to the inside & then slowly up the right leg - can if lifted up with assitance stand on both legs to help carer. 2017 September lifting hoist used - respiratory lung power reducing slowly & upper body strength for supporting upright position reducing slowly. 2017 October right hand strength & control reducing - Note right hand shoulder & arm strained Ibuprofene Gel prescribed by Doctor to reduce pain contributing to the right hand weakness.Left hand strength reducing slowly. Lung power reducing to around 50 %. PEG tube fitment to stomach for nutrients & medicine injection recomended. 2017 November head support & control reducing.

By Chris Allsop (BSc Hons) - High Technology), Oct 18 2017 02:45PM

The MND Patient diagnosis took around 2 years. Why ? Reasons - Medical profession & Care & Support professions not aware of MND nor given training.so they do not recognise MND & get diagnosis, care & support wrong. Free MND training is offered by the MND Association. No one takes any notice of this opportunity because the MND Association are reluctant to advertise MND. We have had to contact the MND Association to find out about this training & the MND Association Just In Case Medical Kit which could save the patients life.We have been informed by MND experts that there are only around 5000 known cases of MND in the UK making it a low priority & yet the other neurological conditions & diseases are relevant & should be related & considered together. Well if it takes around 2 years in our case for diagnosis then there is a high probability of around the same number of undiagnosed MND patients being in the pipeline like the patient was. This means that diagnosed patients have missed the oportunity over 2 years to be directly considered in research & medical trials at the early stages which would make a significant difference to diagnosed & in the pipeline MND patients. Anyone who has been involved with MND patients would spot the obvious changes & conditions leading to MND. One expert in neurological conditions stated they could see the patient moved & walked obviously like an MND patient.If anyone has experienced the whole process of medical diagnosis as we have then we believe the diagnosis could have been made in one day at a medical centre regardless of NHS resources in fact it could have saved wasted time & costs & difficult & uncomfortable journeys for the MND patient. & NHS resources & costs.