Fighting Progressive Bulbar Palsy
A type of Lou Gehrig's Disease.
MND - Motor Neurone Disease
Wednesday, 30 March 2011
2011 in 2011 !!
Meet Shona ! She has set herself an amazing challenge 2011 In 2011 ! and its just as it sounds.
She aims to run 2011km during the course of this year - for those of us - like me ,who still work in old money thats 1,250 miles ! Shona`s godmother Sue was diagnosed with M.N.D. in 2009 , since then she has had to learn to adjust to life with less and less strength in her arms and further more prepare herself and her family for an uncertain future. This has been Shona`s motivation.
Shona writes .....
I knew this isn`t going to be easy but I want to do a challenge , something fairly unique and worthy of donations to my chosen charity the MNDA , I plan to run the equivalent of a marathon a week , every week this year ! [ Wow ! ]
Shona is at present spending three months in the U.S.A. and has just completed The Gusher half marathon , in Beaumont Texas. Her regular run is about 7 miles - The Gusher half marathon is 13.1 ! She writes- I had never run that far all in one go ! but I managed to complete the marathon in 1.57 a personnel best !
Pictured below is Shona [ wearing her MND band of course ! ] taking a well earned rest after completing the run.
Please if you get a moment pop to Shona`s blog and leave her an encouraging comment - I know she would greatly appreciate it - you can also make a donation at this site if you so wish.
http://shona2011.blogspot.com/
I love what you are doing Shona - wishing you lots of luck - I will be following your adventures and progress on your blog xx
Anyone else out there doing any fundraising for MND ? Why not buy a band - send in a photograph wearing it and along with details of what you are doing when and where - and I will give you a mention on the blog !
Friday, 25 March 2011
Free hugs for Viv in Christchurch !
Last week I received another update from Viv -rather than re-write the story myself I thought I would just copy his email out [ Viv writes so much better than me ! ] he writes.....
A couple of days ago , we went to the Earthquake Memorial Service . It was a humbling experience .Upwards of 40,000 people were there , including Prince William of Wales aswell as me and Betty .The two minutes silence was amazing - all those people silent and motionless ,not a sound , even the birds fell quiet.
Anyway , after the formalities were over , there was a rather more relaxed atmosphere and suddenly a gaggle of ladies appeared ,offering free hugs ,what could a chap do ? Under cover of a different hat ,I just had to take my chance. The photo is the result , but speaking of risk , If the left hand looks a little risque ,it was only in the interests of making sure the notice remained visible to all !
Well thats my story anyway !
Leaving the shaking city on the 26 th of April to return to Wales.
Thank you so much Viv for keeping us all informed and for making us feel involved- [and not forgetting - giving us all a chuckle over your latest antics!! ] also for supporting " My brother Andrew " awareness campaign- you have been a great supporter- safe journey home , please keep in touch ! love to Betty..... All of Andrews family xx
Sunday, 20 March 2011
Steamy Windows MND fundraiser
Last nights concert was a great success ! We all had a lovely time -made extra special as Andrew was feeling well enough to come along and join us .It was lovely seeing him being joined by so many of his old friends who had come along especially to support him and the MNDA. The band Steamy Windows were superb , I can`t thank them enough for all their hard work in arranging this night , they did a fantastic job ! Several people approached me saying that they were planning to do some fund raising of their own from sponsored walks and runs to auctions ! A great result- Thank you ! Our cousin Russell traveled down from Scotland-he is planning on doing a sponsored off road half marathon run at Balmoral in April , it was lovely to see him after all these years and do some serious catching up ! I can`t believe how generous everybody was -we used up all four of our raffle ticket books ! Above is some video footage of Steamy Windows .
On the right you can see lead guitarist Phil playing the guitar Andrew built for him-it really stood out under the stage lights !
This piece of video footage shows Andrew, with him is Phil from the band " Steamy Windows " who joined him for a little while [-taking a little breather] while the singing duo Montage did the first of their half hour slots [the lady you can see is -Andrews wife Jayne . She is an absolute gem ! and takes such good care of Andrew !! ] Montage were brilliant too ! See for yourselves !
This little video shows brother in law Tim - working the room selling even more raffle tickets !!- Sister Ann made a beautiful hamper which we decided not to include in our main raffle-but to be sold off as a separate item- Yet again people dug deep into their pockets, with one gentleman buying £10 pounds worth of tickets ! A special thank you to my nephew Peter`s daughter Ellie and her friend Matthew who helped out - and to aunty Judy and hubby Ned for folding all those raffle tickets !! Not forgetting the lovely lady Doreen who ran the tombola for us , and Ann[ Jones] for helping out and supplying us with some extra raffle and tombola prizes- you all did a fantastic job ! Thank you all so much ! The evening raised £ 683 .00 for the motor neurone disease association , a fantastic result !
A big thank you also to Ann Jones and the Con club committee members for offering us the use of the room to hold this event .
Thursday, 17 March 2011
Ticking Boxes
Well , I would like to think that we are all now set for this coming Saturdays adventure at the Constitutional Club ! At the beginning of the week I decided, instead of just putting a poster in the shop window where I work I would add a miniature drum kit [ borrowed from nephew Peter`s lad- Louis whose is nearly 3 ! ] So far it seems to have worked ! with lots of people stopping to look and read the poster- I even colour co-ordinated clothes to the MND colours of blue and orange !
The lovely lady Rhian , from the local Prestatyn weekly Journal has done Andrew proud and written a smashing article about Saturdays concert and I even phoned our local radio station to see if they would give us a plug !
When I was greeted by a friendly voice saying hello -I wasn`t sure if I had the right number or not ! So asked very politely is that the radio station and if it is could you please give us a plug for our forth coming charity concert this coming Saturday? - Of course we can -you are on air now ! Go for it ! [ nearly dropped the bloomin phone ] Lucky enough I had the poster in front of me- so I sort of gabbled on a bit- I think everything came out in the right order without stuttering [ seems to happen when I`am nervous ! ] And only a few ........erms at the end ! Proud of myself ! The D.J. promised he would give us a few more plugs throughout the week .
I had a lovely surprise on Tuesday when a parcel arrived through the post for me !
Felt like it was my birthday [ and no -it`s not!! ] Exciting opening something - Hmmm ? What could it be ? Ahh ! isn`t he gorgeous ? He has come all the way from Australia from fellow blogger Linda -thank you ! I`am chuffed to bits with him Linda ! He will be sitting on my computer desk with me- a wonderful reminder of how kind and supportive people have been, not just to me but to all our family !
Well , I have just got all the raffle prizes together and everything is sorted ready to be loaded straight into the car -the sun has just come out- so its time I went and did some serious pottering around in the garden, Jess loves getting out in the garden with me- she just loves to sunbathe !
Some dogs just have life sussed ! hope you are all having a good day !
The lovely lady Rhian , from the local Prestatyn weekly Journal has done Andrew proud and written a smashing article about Saturdays concert and I even phoned our local radio station to see if they would give us a plug !
When I was greeted by a friendly voice saying hello -I wasn`t sure if I had the right number or not ! So asked very politely is that the radio station and if it is could you please give us a plug for our forth coming charity concert this coming Saturday? - Of course we can -you are on air now ! Go for it ! [ nearly dropped the bloomin phone ] Lucky enough I had the poster in front of me- so I sort of gabbled on a bit- I think everything came out in the right order without stuttering [ seems to happen when I`am nervous ! ] And only a few ........erms at the end ! Proud of myself ! The D.J. promised he would give us a few more plugs throughout the week .
I had a lovely surprise on Tuesday when a parcel arrived through the post for me !
Felt like it was my birthday [ and no -it`s not!! ] Exciting opening something - Hmmm ? What could it be ? Ahh ! isn`t he gorgeous ? He has come all the way from Australia from fellow blogger Linda -thank you ! I`am chuffed to bits with him Linda ! He will be sitting on my computer desk with me- a wonderful reminder of how kind and supportive people have been, not just to me but to all our family !
Well , I have just got all the raffle prizes together and everything is sorted ready to be loaded straight into the car -the sun has just come out- so its time I went and did some serious pottering around in the garden, Jess loves getting out in the garden with me- she just loves to sunbathe !
Some dogs just have life sussed ! hope you are all having a good day !
Sunday, 13 March 2011
Steamy Windows Gig 19th March 2011
Well , not long to go now-I can`t believe how fast time flies ! Andrews friends and fellow musicians from the Blues band " Steamy Windows " are doing a brilliant job of organizing this gig to be held at the Prestatyn Constitutional club this coming Saturday the 19th March .They now have a support act , a singing duo called " Montage " and a comedian/ compere for the show ! Entry fee is just £2 on the door and there will be a raffle with some great prizes ! Doors open 8pm ! Please come along and join us -it will be great fun ! Steamy Windows are a fantastic band -all the money is going to the Motor Neurone Disease Association. Phil who is the lead guitarist in the band has offered to write a piece for the blog , this is his story ............
Above is the AWG Stratocaster Andrew built for Phil [AWG.....stands for Andrew William Gray ]
I first met Andy in 1989 when I went into Jones` electrical shop to get my technics tape deck calibrated to 4`40 as it was a direct drive unit I had to have it spot on to allow me to play along in concert pitch ,as I was so impressed with Andy`s work I bought a second one as a back up. Anyhow after a few years passed we met up again as I needed my guitars looking after by a top guitar tech , and I know , Andy was the best. He taught me a lot over the years , many a time he would text me to come down to the Barn Studio and show me how to set up my pedals and my amp , setting the tone just right to allow me to get my blue tone I have always wanted.Then came the day Andy asked me if I would like him to build me a AWG custom Stratocaster ! I was so taken aback he would even consider building me one so I jumped at the chance , we discussed what I would like and a few weeks later I got the phone call from Andy to come and try my new AWG custom out , and wow it is amazing to play ! Anyway I could go on and on ............
The guitar above Phil has called " the Gray one " he writes ......This is Andy`s old one- a Stratocaster which I bought from him-he built it all by hand.
Reading this I guess you realize Phil and Andrew [sorry can`t call him Andy !!!] go back a fair way and have a shared passion ! It is lovely that these guys from the band have come forward and are prepared to support Andrew in his fight to raise awareness and funding for MND -I know Andrew is delighted and really touched by their kindness and support. Please pop along and help make the evening a great success -these boys, really are a great blues band !
These are some of the raffle prizes I have been sorting out today , the cushion has been donated by a lady whose mother is suffering with motor neurone disease , it is all beautifully hand made with little red beads sewn into it-its gorgeous !
The M and S card is for £30 and arrived last week after I had written a letter to Marks and Spencers asking for a donation for our raffle ! great result ! Below are just some of the items that have been donated !
raffle tickets will be £1 a strip !!! contact details janprestatyn@hotmail.co.uk
Above is the AWG Stratocaster Andrew built for Phil [AWG.....stands for Andrew William Gray ]
I first met Andy in 1989 when I went into Jones` electrical shop to get my technics tape deck calibrated to 4`40 as it was a direct drive unit I had to have it spot on to allow me to play along in concert pitch ,as I was so impressed with Andy`s work I bought a second one as a back up. Anyhow after a few years passed we met up again as I needed my guitars looking after by a top guitar tech , and I know , Andy was the best. He taught me a lot over the years , many a time he would text me to come down to the Barn Studio and show me how to set up my pedals and my amp , setting the tone just right to allow me to get my blue tone I have always wanted.Then came the day Andy asked me if I would like him to build me a AWG custom Stratocaster ! I was so taken aback he would even consider building me one so I jumped at the chance , we discussed what I would like and a few weeks later I got the phone call from Andy to come and try my new AWG custom out , and wow it is amazing to play ! Anyway I could go on and on ............
The guitar above Phil has called " the Gray one " he writes ......This is Andy`s old one- a Stratocaster which I bought from him-he built it all by hand.
Reading this I guess you realize Phil and Andrew [sorry can`t call him Andy !!!] go back a fair way and have a shared passion ! It is lovely that these guys from the band have come forward and are prepared to support Andrew in his fight to raise awareness and funding for MND -I know Andrew is delighted and really touched by their kindness and support. Please pop along and help make the evening a great success -these boys, really are a great blues band !
These are some of the raffle prizes I have been sorting out today , the cushion has been donated by a lady whose mother is suffering with motor neurone disease , it is all beautifully hand made with little red beads sewn into it-its gorgeous !
The M and S card is for £30 and arrived last week after I had written a letter to Marks and Spencers asking for a donation for our raffle ! great result ! Below are just some of the items that have been donated !
raffle tickets will be £1 a strip !!! contact details janprestatyn@hotmail.co.uk
Thursday, 10 March 2011
Face in space !!
Now some of you might recall how last year as part of my travelling bands competition I tried to get a band into space - by writing my request to Nasa - I then stated if that was not possible then maybe please could I have a photograph of an astronaut wearing a band or even a technician [ you know the sort of thing- with head phones and a mike on ! ] or in desperation an office cleaner ! [ Well- what ? I didn`t want the band going to waste !! ] You might also recall that upon discovering a reply from Nasa and rather excitedly calling out to hubby, who had been languishing in the bath at the time- how he had hot footed it out of the bath - leaving wet footprints all along my hall carpet- to stand butt naked looking over my shoulder as I opened my email-excitement turning to disappointment - as the email stated Nasa regrets they cannot fly a risk band into space [doh !] , only few exceptions such as for natural museums or historical purposes, request cannot be accommodated . Blah Blah Blah ! oh drat !........ But ahhh ! that wasn`t the end of this tale as thanks to fellow blogger Cassie who wrote a comment saying- Janet , why not try and get a photo in space on the last shuttle but you need to do it ASAP ,there are only 2 flights left and they are in November....Best of luck !
We filled in the forms and added the photograph and forgot all about it until the other day when the certificate came through ! Andrew your photograph has been aboard the space shuttle Discovery on mission STS-133 from February 24 th - March the 9 th 2011 , the certificate states your face was flown on Discovery`s mission to the international space station at an altitude
of 220 miles above Earth, it flew at a speed of more than 17,400 miles per hour as it orbited our planet ! [ double click to enlarge photograph /certificate]
Andrew , I can see you waving and giving us the thumbs up ! it looks like you had a good time ! well not quite a band in space-but it was the next best thing as you are wearing your wristband in the photograph !!
Thanks Cassie that was a brilliant idea of yours and a lot of fun to do ! xx
We filled in the forms and added the photograph and forgot all about it until the other day when the certificate came through ! Andrew your photograph has been aboard the space shuttle Discovery on mission STS-133 from February 24 th - March the 9 th 2011 , the certificate states your face was flown on Discovery`s mission to the international space station at an altitude
of 220 miles above Earth, it flew at a speed of more than 17,400 miles per hour as it orbited our planet ! [ double click to enlarge photograph /certificate]
Andrew , I can see you waving and giving us the thumbs up ! it looks like you had a good time ! well not quite a band in space-but it was the next best thing as you are wearing your wristband in the photograph !!
Thanks Cassie that was a brilliant idea of yours and a lot of fun to do ! xx
Tuesday, 8 March 2011
Trevor
Meet Trevor Evans ! He is 85 years young and after reading the blog last week- very kindly sent in a donation, as you can see he was more than happy to support our awareness campaign and pose wearing one of our bands ! Thank you Trevor we really appreciate it .Can you spot where Trevor lives ? The clue is in the background -correct spelling please !
The weather here has been lovely the past couple of days and I have cracked on and spent quite a bit of time in the garden ! It is now only around ten weeks to go before I have my open day [yikes ! ] Everything is springing into life [including the weeds ] My lawn looks in a terrible state-I only hope that it recovers in time, you can see the route the dog takes round the garden in the mornings ! Any tips please ? I have button holed a friends mother today into making me one of her yummy cakes -I think she was actually delighted to have been asked-seeing it as a great compliment ! [ it was ! ] We have started asking people we know if they would like to come and support us on the day - Aunty Judy has been given the job of head tea lady ! [ can not remember if I have actually asked her or not yet -she won`t mind I`m sure ! ] Hubby has promised to try and sort out our log shed so all in all things are getting done ! looking forward to the lighter evenings-not far off now.
The weather here has been lovely the past couple of days and I have cracked on and spent quite a bit of time in the garden ! It is now only around ten weeks to go before I have my open day [yikes ! ] Everything is springing into life [including the weeds ] My lawn looks in a terrible state-I only hope that it recovers in time, you can see the route the dog takes round the garden in the mornings ! Any tips please ? I have button holed a friends mother today into making me one of her yummy cakes -I think she was actually delighted to have been asked-seeing it as a great compliment ! [ it was ! ] We have started asking people we know if they would like to come and support us on the day - Aunty Judy has been given the job of head tea lady ! [ can not remember if I have actually asked her or not yet -she won`t mind I`m sure ! ] Hubby has promised to try and sort out our log shed so all in all things are getting done ! looking forward to the lighter evenings-not far off now.
Friday, 4 March 2011
Name that building ! Bands revisited !
I laughed to myself when I received this picture a couple of weeks ago ! As I recognized this building immediately ! [ it holds lots of lovely memories for me ] Can you tell me the name of the building and where it is located ? It is widely regarded as one of the finest neo-classical buildings in the world and is grade two listed. The first foundation stone was laid in 1838 [ to commemorate the coronation of queen Victoria ]but the actual building was not started until 1842 , a truly muti purpose community building where people could be tried for murder , attend a ball or listen to a concert all under one roof ! [and no , I was not up in court ]
It fell into disrepair in the 1980`s [ the law court was closed and moved location in 1984 ] but it re-opened in April 2007 following a £23 million award winning refurbishment project and is now a focal point for cultural , community , civic, corporate and performing arts activities. It stands 169 ft long 74 ft wide with a tunnel vaulted ceiling , the largest of its kind in Europe .The ceiling is supported on massive red granite columns ,
Behind the gold leaf and porticoes the hall has one of the greatest brick arches in the world and houses a priceless mosaic floor of 30,000 tiles ,The hall is also home to a concert organ complete with 7,000 pipes second only to the organ in the Albert Hall.
Several years ago a gang of us- consisting mainly of my sisters allotment buddies , myself and brother in law Chris decided we wanted to learn how to dance ! we joined a local dance class-I can`t tell you how much fun it was ! After several months we got a minibus going and treated ourselves to a night out here ! There was a champagne bar made from ice ! a demonstration by some of the stars from Strictly Come Dancing , We had a fantastic time !
It was lovely just to dress up ! Can you spot any familiar faces ? if the couple in the centre would only get out of the damn way ! there is rather a dashing couple in the background [to the right ] !! I`am so glad we made the most of these Spring and Summer balls when we did as they were deemed last year not to be cost effective so they no longer hold them .
I`am reliving it all again just seeing the photographs-its a fabulous place-don`t you agree ? So which building and where did our travelling bands pass by ?
For anyone like me who enjoys looking for antique bargains you will probably enjoy the programme Cash in the Attic . In a recent episode the actor Frazer Hines was donating unwanted items in support of his cancer charity [ Frazer suffered with bowel cancer-happily now he has received the all clear ] I met Frazer last year in Prestatyn while he was touring doing his one man show, he was a charming man and readily agreed to support Andrew and he purchased a MND band from me . You can imagine how thrilled I was while watching the episode to see that Frazer was actually wearing his MND band on the programme [ scenes filmed at the auction ] What a boost it has given Andrew and the family to see how actively he is supporting our campaign. I left a message on Frazers facebook page to thank him .
You can watch the programme BBC I player-cash in the celebrity attic: series 6 : Frazer Hines
www.bbc.co.uk
It fell into disrepair in the 1980`s [ the law court was closed and moved location in 1984 ] but it re-opened in April 2007 following a £23 million award winning refurbishment project and is now a focal point for cultural , community , civic, corporate and performing arts activities. It stands 169 ft long 74 ft wide with a tunnel vaulted ceiling , the largest of its kind in Europe .The ceiling is supported on massive red granite columns ,
Behind the gold leaf and porticoes the hall has one of the greatest brick arches in the world and houses a priceless mosaic floor of 30,000 tiles ,The hall is also home to a concert organ complete with 7,000 pipes second only to the organ in the Albert Hall.
Several years ago a gang of us- consisting mainly of my sisters allotment buddies , myself and brother in law Chris decided we wanted to learn how to dance ! we joined a local dance class-I can`t tell you how much fun it was ! After several months we got a minibus going and treated ourselves to a night out here ! There was a champagne bar made from ice ! a demonstration by some of the stars from Strictly Come Dancing , We had a fantastic time !
It was lovely just to dress up ! Can you spot any familiar faces ? if the couple in the centre would only get out of the damn way ! there is rather a dashing couple in the background [to the right ] !! I`am so glad we made the most of these Spring and Summer balls when we did as they were deemed last year not to be cost effective so they no longer hold them .
I`am reliving it all again just seeing the photographs-its a fabulous place-don`t you agree ? So which building and where did our travelling bands pass by ?
For anyone like me who enjoys looking for antique bargains you will probably enjoy the programme Cash in the Attic . In a recent episode the actor Frazer Hines was donating unwanted items in support of his cancer charity [ Frazer suffered with bowel cancer-happily now he has received the all clear ] I met Frazer last year in Prestatyn while he was touring doing his one man show, he was a charming man and readily agreed to support Andrew and he purchased a MND band from me . You can imagine how thrilled I was while watching the episode to see that Frazer was actually wearing his MND band on the programme [ scenes filmed at the auction ] What a boost it has given Andrew and the family to see how actively he is supporting our campaign. I left a message on Frazers facebook page to thank him .
You can watch the programme BBC I player-cash in the celebrity attic: series 6 : Frazer Hines
www.bbc.co.uk
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