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)
September 10, 2008 at 9:45 pm
It’s been a long time since we’ve spoken to each other and Brian just told me about the blog recently so I thought I’d drop you a wee note. I just wanted to say how much Alison and I have been touched by the strength that you and Louise are showing- it’s absolutely amazing to see how you’re dealing with things with such courage, spirit and humour. You’re both in our thoughts a lot.
Brian mentioned that he’d been down to see you at Oscars birthday party and he said that he had a great time.
At our end, Alison as has just packed in a potentially lucrative career as a solicitor to re-train as a primary school teacher so we’re on the financial scrapheap, (this follows her purchase of a number of floral skirts, smock dresses, an overly indulgent suite of pencil cases and several cans of tear gas.) We’re still living in Edinburgh –somehow and stupidly I’m still doing the architecture thing.
Anyway, as I say you’re in our thoughts and lots of love to the three of you.
Sandy & Alison Robinson xx
September 12, 2008 at 6:51 pm
Hello Platts –
Douglas is on his way down to you as we speak. He is under instruction to give you lots of Reiki Neil, I am sure you will be pleased to hear. I saw Alison on Wednesday and she sends you all her love and told me to tell you that she thinks about you every day and still has you in her healing box. I hope Oscar is ok and not missing his Auntie Sara too much but I will be back down before you know it.
Thinking about you and sending our love every day,
Sara & The Noblettes
September 16, 2008 at 8:19 pm
Just wanted to say that Douglas seemed very relaxed when he came back from yours – you obviously weren’t working him hard enough! Hope you found it helpful having him there – I know it meant a lot to him to come and spend some time with the three of you. Mairi and Hamish ask about you all every day and Eilish talks about Oscar all the time and calls him her friend.
I will see you all in a couple of weeks but it the meantime, I will be sending you lots of Reiki…. and love.
Kisses to you all,
Sara & Co. x x
September 18, 2008 at 12:54 pm
Hi, I found your blog on this new directory of WordPress Blogs at blackhatbootcamp.com/listofwordpressblogs. I dont know how your blog came up, must have been a typo, i duno. Anyways, I just clicked it and here I am. Your blog looks good. Have a nice day. James.
September 26, 2008 at 1:20 pm
After reading this post I made some enquiries with my company about getting charitable donations… Unfortunately there is a long process to go through to get nominated and the next deadline for inclusion in the nominations round is 9th Feb next year, but if you want to give it a go and at least get the ball rolling, I’m sure a lot of my colleagues would support your nomination for funding toward the MND research centre. A lot of them have read your blog and have been very touched by it – the young mums in particular – and they ask about you regularly. I have no idea how much this might bring in, I suppose it depends on how much we ask them for! Anyway, I have the nomination form now, so if you want to drop me or Brian an e-mail I’ll send it on and we can take it from there.
Love, light and peace,
October 4, 2008 at 11:05 am
Just wanted to say a quick hello. I think your blog is amazing, as are you. I’m still in Crouch End, and not much has changed, except we now have more wine bars, hairdressers and estate agents, -if that’s possible! I moved flats recently, and still finding things to unpack but getting there.
Thinking of you, much love to you all.
October 6, 2008 at 6:17 pm
Just wanted to say that I am missing you all already. I was so happy to be with you when Oscar took his first step – what a clever big boy.
Thinking about you every day and sending you lots of love, and Reiki.
See you in November,
Sara x x
October 7, 2008 at 11:47 am
Hello again everyone – very impressed to read Oscar’s news via Sara’s message – wow – bet he’s pleased with himself. Megan is charging around the place and starting to get opinionated….
Love to you all X X X
Lisa & Richard Stefanski
October 14, 2008 at 10:44 am
Hello Neil, Louise & Oscar,
…Just wanted to drop you a line.
We hope,that although things have progressed, you are all as well
as you can be and your days remain comfortable, full of laughter and love.
We miss you dreadfully and send you lots of love and hugs.
Keep strong, love you, Lula & Rick xxxx
December 22, 2008 at 3:36 pm
Hello Neil, I am sorry we have not met, but I get a sense of your extraordinary spirit. But then, anyone Squeezie would choose would have. Steve Hamlin, Canandaigua, New York