This was the start of Neil putting his mind to fundraising as others had kindly begun to do it on his behalf. I think he realised the blog was his voice and although his body was confined to a chair, he could do a lot with his voice. – Louise (2013)
Hi everybody. I meant to mention yesterday the fantastic efforts of Megan/Sas and Sara in their fundraising for the MND Association. Megan's sponsored waddle has been amazingly successful, as has Sara's 'Knocking-on-a-bit' for charity! Thanks very much to both of you from me as someone who benefits from the invaluable help the association provides.
If anyone else is considering doing any fundraising in the future, I set up a tribute fund in memory of my father, the proceeds from which go directly to the MND Association. Anyone may make donations through the fund. It can be found at http://david.platt.muchloved.com
In addition to fundraising for the association, we are also attempting to raise £5m for the final stage of funding for a new MND research centre in Sheffield. So if anyone has any ideas as to who to approach for major contributions, please let me know.
Well done again to Megan and Sara.
Much Love, Neil.
During one of Neil's first clinics at the Royal Hallamshire Hospital with Professor Pamela Shaw, she told us of the plans for SITraN (Sheffield Institute for Translational Neuroscience). The project was at a stage where the building plans were about to be put forward for planning permission, but to reach completion they would need to raise another £5m. Neil had meant to put together an information pack to send out to some companies he had worked with in the past, but it was just one of these things that had slipped away with his abilities. From this point on he always tried to mentioned SITraN alongside the MND Association during interviews.
SITraN was opened in 2011 by Her Majesty Queen Elizabeth II.
Over a month went by till the next blog. Looking back at my wall calendar for September and October, these two months were a scribbled mess of appointments, such as physio, speech therapist, occupational therapist, dietitian, MND nurse, bloods nurse, district nurse, palliative care team, respiratory team, Marie Curie sitter, and GP. After the assessments there would always be more equipment to make space for, drugs to keep track of and more appointments to write up.
Oscar had his own schedule too, he was going to a private nursery two afternoons a week, and I was still trying to keep up his baby swimming class. It was important to me that Oscar was able to experience the company of other children. I can see appointments with the health visitor and his MMR on the calendar too.
During this time we had a second ventilator, with a humidifier. His usage crept up hour by hour until one day, it had become 24 hours. The user handbook we had been given had an emergency advice page with the subtitles ‘Ventilator Breakdowns’ , ‘Power Cuts’, and ‘Mask Breakages’. The advice was not to panic as most people can manage one or two nights without ventilation, but Neil was now gulping like a fish out of water after 40 seconds without it. It had only been a month and a half before he had become completely dependent. The respiratory specialist came out to the house and brought the next version up, which had an internal battery and gave us a second one as back up.
In the next post Neil talks of all our wonderful friends and family who booked in to help. By then we needed two able bodied adults in the house at all times, and the night sitters and palliative care had been increased to seven days a week. – Louise (2013)