Monthly Archives: February 2012
Because I am unable to give blood I needed to find another challenge to replace it. I gave it some thought for quite a time and finally came up with Wood Turning. Why did I replace it and not just say, “didn’t complete that one”, simple, I want to complete a list of 50 activities and not being able to give blood is out of my control so I needed a replacement.
The reason for choosing wood turning goes back to my schools days when I made a very sad excuse for a lamp. But since then I have seen wood turners create some beautiful pieces of work and I’d love to give it a go.
All this media interest was quite surreal. I got many offers from different media organisations. One of the offers came from Channel 5 news but at the same time we also got an offer from the BBC’s The One Show and we felt that we could get the message across with what the BBC had to offer, rather than sitting just talking about it.
So we gratefully accepted and filming began on the Thursday 15th Feb. We filmed all day long and it was exhausting but the end result was brilliant. Lucy Siegle pronounced and described the condition perfectly. They even focused on my hands which really highlighted the dexterity problems people with CMT have.
I can’t tell you how nervous I was before the program started, more nervous than being blown around in a 110 mph wind tunnel that’s for sure!
Since the report aired the response has been very positive.
I feel very confident, even more so now, that The 50 List is going to be completed!
To see the report on the One Show visit http://www.bbc.co.uk/i/b01c2y5c/?t=11m53s
When the article about “The 50 List” appeared in the Herald & Post I thought that it was just what this mega challenge needed, a bit of exposure. Raising the profile and money for CMT and inspiring others and especially my daughter to know that everything is worth having a go at.
Today I got a call to tell me that it had appeared in the National papers The Sun, Daily Telegraph and the Metro, which was great as I was reaching a larger audience. Later I started getting lots of phone calls and emails from magazines and TV stations. It has gone nuts and to tell you the truth I was overwhelmed but at the same time very excited that what I was trying to do was going to be seen by more people.
But first I had to give an interview to Heart FM for one of their news slots. The interview was recorded over the phone and after I had finished the interview the phone wouldn’t stop ringing so I missed the news and didn’t get to hear the interview, which is maybe a good thing as I hate the sound of my own voice!
On Thursday I have been invited to spend a day with a film crew from the BBC’s The One Show which will be aired on Friday evening. Lisa and I and our three children are looking forward to an interesting and exciting day.
Magazines have also been in touch and I am grateful and fortunate that SWNS News Agency has been managing the media for me, otherwise I would have been completely overwhelmed with all this attention!
So, keep your eyes on the TV Friday evening to watch The One Show on BBC1 at 7pm
Here’s another update and today The 50 List got the biggest boost so far. The Herald & Post, a local newspaper, run an article today about my 50 challenges. I was amazed to see an intro of the article on the front page. On the strength of that a news agency has been in contact and is very interested in running the story, hopefully it will be picked up this time.
To see the online version of the Herald & Post article visit http://www.northampton-news-hp.co.uk/News/Wellingborough-and-Rushden-News/Disabled-dads-daring-mission-08022012.htm
Note: The report mentions that I have muscular distrophy when in fact it is muscular atrophy which is very different.
I again I’m going to have to swap out one of my 50 list activities today. This afternoon I went along to give blood for the first time. Now, anyone who knows me will know that I have a bit of a needle phobia so this activity wasn’t going to be plain sailing but I didn’t think twice about doing it. I’d rather see someone benefit from receiving my blood that some doctor looking at it through a magnifying glass. I arrived and signed in and waited for a while until I was called. I hadn’t realised that everything is so open; you can see all the people giving blood, lying on what looked like decorating tables. I was called into a cubicle so that they could take a sample of my blood and determine blood type, if it was red enough that kind of thing. She asked me the name of my condition which I gave her she then said “I’ll just go and get a nurse”. Five minutes later a nurse walked in and explained to me that as they didn’t have any idea of what my condition was they would have to write to my GP first. I told them that would be fine but then she explained that it wouldn’t be wise to give blood considering my arms are the only limbs that get me around. She went on to describe what could happen should they hit a nerve or damage a vein, she said, “as a wheelchair user you’re going to find it very difficult to regain your mobility even if there were no complications”. Despite my slight needle phobia I was quite disappointed but that’s their decision and I can’t argue with it, well, I did politely.
So, what now? I am going to add a new item onto my 50 list but it’s my daughter, Eleanor, that is going to think of it. (So long as it doesn’t involve wearing a pink tutu!) I’ll keep you updated.