Fighting Progressive Bulbar Palsy
A type of Lou Gehrig's Disease.
MND - Motor Neurone Disease
Wednesday, 28 December 2011
A Drop In The Ocean - A New Years Day Swim
The other day I stumbled across a just giving site that stopped me in my tracks and made me sit and cry-I was so very moved.
The lady had written ............I`m not a fan of the cold and I`ve never been keen on dressing up.
So what makes me think of dressing up and swimming in a icy cold North Sea on New Years Day 2012 ?
It all started because I read the touching blogs of two siblings whose brother suffered from and recently died from MND..........
To support his family, and in Andrews memory and to raise funds for the MNDA- I`ll be taking that New Years dip at approximately 12.30 at Sandside Beach Area , Scarborough.
Please pop across and leave Elizabeth a message of support and donate if you can-She is one very brave lady ! This means so much to our family and we have been very moved by her sincere and very generous offer of help.The just giving page will be up and running until 31 January 2012
You can read more at
http://www.justgiving.com/Elizabeth-Stanforth-Sharpe1
Good luck Elizabeth -I hope the weather will be mild on the day !! We will be thinking of you and I have sent you some bands -I hope they arrive in time xxx
Tuesday, 27 December 2011
Christmas Day at Eric`s
Many thanks to Cristina who sent in this lovely photograph of her Christmas Day celebrations- spent at her friend Eric`s house. Eric is living with M.N.D and Cristina thought it a nice gesture to buy some of our awareness bands and show him her support by getting the whole family wearing them -she writes he is wearing his band with pride and added we will never give up our fight to beat MND............Neither will our family Cristina and thank you for helping to spread the word by supporting our awareness campaign xx
Please remember- if you have purchased a band from us - post a photograph onto your facebook
page or click on to the "F" at the bottom of this post to help spread the word !! [ you can also email this or post it on twitter ]
The more bands we sell the more money goes to the MNDA to help fund a research project-helping to keep the hope of finding a cure alive.
Thank you Cristina
Please remember- if you have purchased a band from us - post a photograph onto your facebook
page or click on to the "F" at the bottom of this post to help spread the word !! [ you can also email this or post it on twitter ]
The more bands we sell the more money goes to the MNDA to help fund a research project-helping to keep the hope of finding a cure alive.
Thank you Cristina
Saturday, 17 December 2011
Motor Neurone Disease Awareness Bands
On behalf of Jayne and all of our family -I would just like to thank everyone who very generously donated at Andrew`s memorial service- the money is being split between St. Kentigerns Hospice and The Motor Neurone Disease Association-so far the amount is £750.00 and rising ! Thank you so very much .
I will continue to sell our bands on behalf of the M.N.D.A on this blog , If you know of anyone who has Motor Neurone Disease- please, please purchase one -they cost just £2.50 each .This is such a good way of supporting someone and showing you care by raising awareness and extra funding.The money we raise goes in full to the MNDA to help fund a research project into finding a cure and better treatments for this awful illness.
I will continue to wear my band with pride not only for Andrew but for everyone who suffers from this illness. Please help by spreading the word-you can share this post on to your facebook page by pressing the letter "F" at the bottom of this post.
A special thank you to everyone who has supported us during these last few years- Wishing you Love , Hope and strength and lots of special times this coming Christmas with your loved ones....we will be raising a glass or two to Andrew !
Jan and all of Andrew`s family xxx
I will leave you with this lovely little video -It`s "The bloody Jenny club !" Some of you might recall a post I did a while back about Jenny Green and her amazing family- Jenny is living with M.N.D . She and her family have worked tirelessly to raise awareness and funding for the MNDA - "The bloody Jenny club " is so called because according to Jenny it`s her fault everyone gets cold ,wet, tired and spends hours fundraising !! [ Hmm sounds familiar ..] she also adds , "There is also a lot of fun and sense of achievement to be had-even by me ! " Jenny can be seen in the video on her tramper which is decorated with antlers and red nose -200 competitors turned out recently for The Farleigh Santa Sprint in Maldon , Essex all dressed as Father Christmas, [ very confusing for the little ones laughs Jenny ] Jenny`s team had 22 not including 3 babies in pushchairs .The money she helped raise [ over £1,000 ] was donated to the Farleigh Hospice. Well done to you all and Merry Christmas !
You can catch up with Jenny via her blog just google -The Jenny Green Tribute Fund .
I will continue to sell our bands on behalf of the M.N.D.A on this blog , If you know of anyone who has Motor Neurone Disease- please, please purchase one -they cost just £2.50 each .This is such a good way of supporting someone and showing you care by raising awareness and extra funding.The money we raise goes in full to the MNDA to help fund a research project into finding a cure and better treatments for this awful illness.
I will continue to wear my band with pride not only for Andrew but for everyone who suffers from this illness. Please help by spreading the word-you can share this post on to your facebook page by pressing the letter "F" at the bottom of this post.
A special thank you to everyone who has supported us during these last few years- Wishing you Love , Hope and strength and lots of special times this coming Christmas with your loved ones....we will be raising a glass or two to Andrew !
Jan and all of Andrew`s family xxx
I will leave you with this lovely little video -It`s "The bloody Jenny club !" Some of you might recall a post I did a while back about Jenny Green and her amazing family- Jenny is living with M.N.D . She and her family have worked tirelessly to raise awareness and funding for the MNDA - "The bloody Jenny club " is so called because according to Jenny it`s her fault everyone gets cold ,wet, tired and spends hours fundraising !! [ Hmm sounds familiar ..] she also adds , "There is also a lot of fun and sense of achievement to be had-even by me ! " Jenny can be seen in the video on her tramper which is decorated with antlers and red nose -200 competitors turned out recently for The Farleigh Santa Sprint in Maldon , Essex all dressed as Father Christmas, [ very confusing for the little ones laughs Jenny ] Jenny`s team had 22 not including 3 babies in pushchairs .The money she helped raise [ over £1,000 ] was donated to the Farleigh Hospice. Well done to you all and Merry Christmas !
You can catch up with Jenny via her blog just google -The Jenny Green Tribute Fund .
Tuesday, 13 December 2011
John`s Eulogy
Thought I would share with you The Eulogy my brother John wrote for Andrew.
When I was originally asked to write the Eulogy for Andrew , I started the whole process of evaluation during a long walk in the country.
Nearly 50 years of memories , I felt , had to be combed through , thought about and examined so that some sort of order and clarification could be reached.
But , it was the wrong way to go about things , I realize that now - for in actual fact , all I needed as a starting point , was to acknowledge that Andrew was a person who was always very different.
He was a man that walked his own path in life.
As children , my sister Janet and I , always thought of him as a bit exotic, a bit of a rebel , a bit of a maverick.
And on my walk , I made a mental list of just why we did.
He was always a bit of a rocker -okay- He did have a brief dabble as a mod-complete with parka and a hand painted Lambretta moped ! but his heart was always in the Marc Bolam , T-Rex and Black Sabbath camp - music that was important to him throughout his life.
Some people won`t believe this !
He had long , luxurious red hair , which tumbled rather seductively to his shoulders and looked remarkably like a pre- raphaelite heroine [ but only from behind ! ]
He was often moody, never spoke , but had the extraordinary ability to argue a lot.
His pride and joy was his immaculate jet black ford Anglia which sported a day glow orange go faster stripe and had as I recall incredibly furry seats.
He had a set of scruffy friends that drank a lot .
And he wore a scruffy Afgan coat that smelled a lot .
He smoked and drank too much - and smoked strange large homemade cigarettes - always when mum and dad were not home.
Yes, He was a bit of a rebel.
He sported a flash pair of homemade painted silver platform boots - which were accessorized rather nattily with a somewhat battered Scooby Doo T-shirt.
What bloody strange things you remember eh ?
He was also a bit of an athelete and played tennis for Flintshire , was a talented artist , a risk taker.
He was not an academic in any way , but was always good practically ,being able to work with his hands instinctively and with talent.
He played drums in a band called "Resistance" and nearly hospitalized my father - when during a publicity stunt for "The News of the World " - he was photographed in the nude-behind his drum kit.
I remember my father wailing that it was the end of his budding career in local politics .
The collective family -knashing of teeth was , as I recall ,highly amusing to us kids.
The band toured Germany
And my parents calmed down....... eventually !
Andrew calmed down too - well just a little, as he met and fell in love with Jayne and it was Jayne that always generously let him walk his own path when it came to what made him happy.
In the 1970`s Andrew and his lifelong best friend Tim , donned matching black and yellow anoraks to take part in the local motor club rallies and hill climbs with Tim as his driver and Andrew as his trusty navigator.
Even then Andrew had to be the best at what he undertook- even designing rudimentary yet effective microphone communication hidden away in their crash helmets.
The joy of this exhilarating and dangerous sport took Andrew to several national and international events - He loved the thrill and competitiveness of it all.
He played snooker for the Con Club and loved his weekly " Ninety Nines " at the golf course with Tim, nephew Peter and friend Geoff Kay .
I remember at the height of the C.B radio`s popularity Andrew had to have the biggest and most flash rig going - I managed to reach Gronant on my C.B. - on his - he spoke to to a bloke in Canada !
And he loved the excitement of building his own model airplanes [ his only slightly geeky past time ] Although I remember the romance paled slightly when he lost part of a finger in what can only be described as an
" Out of control - Cessna - friendly fire incident !"
Andrew loved playing the raconteur at family get togethers - when he could deliver a story with all the pace and humour of Joan Rivers.
Even in his latter years -his ability to communicate , albeit by gesture and expression was never diminished.
On reflection, I think Andrew`s life in many ways, went full circle.In his teens his love and enjoyment of music creativity was a passion- and in his 50`s when most of us embark on the more comfortable and mundane and more relaxed -he grasped the nettle and re entered the world of music and musicians again. This mid life change brought him a contentment and , I think a wonderful sense of self worth. In his mid 50`s- he had found and had embraced his niche -a niche that was only eclipsed by Andrew`s role as a husband and father to son Jon -who was his pride and joy.
Mind you ! Believe me when I say Andrew was a true " Gray " he was stubborn, opinionated and enjoyed being in charge. So when Motor Neurone Disease started to bare its awful teeth ,so to speak ,Andrew typically refused to allow the symptoms to dictate to him.
It was a difficult battle .
But it was a battle that he and Jayne fought together. Jayne was his rock. With a natural skill, resilience ,strength and tenacity , she never wavered in her role as advocate for Andrews wishes.
He wanted to remain at home until the end---she ensured that was the case.
He wanted to be without pain or anxiety at the end - working with the wonderful team of health care professionals -she ensured that was the case.
And he wanted to die with dignity with Jayne and Jon at his side.
And as we all know-this final wish was granted.
As a previous ward manager, I have probably interviewed neigh on 100 nurses for jobs, I can tell you one thing honestly...
I would have employed Jayne any day as a trained nurse-she did my brother proud in the way she cared for him .
And I would like to take this opportunity, on behalf of my family, to publicly thank her for all of the work she did.
THANK YOU JAYNE FOR EVERYTHING.
I was going to finish this eulogy with a piece of poetry, a traditional saying or an appropriate verse from a song or from a piece of literature...
But on reflection I decided that it was not really Andrew.
He was not an emotionally indulgent like me , or flowery or overly sentimental.
It was not his way- at the end of a visit there would be no realms of written notes , no emotional Jacuzzi`s -no wringing of hands.....
There was always however - a bit of a gentle smile , a nod of thanks and a somewhat jaunty "thumbs up " when goodbyes were said.
So that`s what we all should give him now..........
Our best smile
No tears , a nod and a jaunty thumbs up .
Beautifully written don`t you think .
Ann and I made the arrangement -using some of Andrew`s old drumsticks ,the rings represent his drums and the roses are called rather appropriately " Grand prix "
Mike Peters sang an acoustic version of his song " Breathe " before being joined by Phil Strat Evans and together they sang another of Andrew`s favourites " Knocking on Heavens Door"
He would have loved it .
Saturday, 3 December 2011
The Fight will go on
I thought I would share this video with you-it was filmed in January 2010 at The Gathering, in Prestatyn. Andrew had seen his consultant the previous October who had confirmed what Andrew already knew - that he had MND- he gave Andrew 12 months to live. Andrew was guitar teching for Mike Peter`s from The Alarm at the time.
Mike, who having survived leukemia twice sang this song at the end of his concert inviting his local G.P. and consultant on stage [ that`s two guys on the left-the consultant is playing a red guitar ] he also asked Andrew to join them.
Andrew is on the extreme right with a white t-shirt on-plugging in the guitars at the beginning ,
Ann, Tim, Ned, Jonathan,Lucy and myself were there on the night clutching a home made banner-written on it was- we- love -Andy !! Our hearts were breaking- Ann and I- we cried and sang along and waved that banner and supported him all the way.
There have been so many wonderful tributes left on Andrew`s facebook wall -a lot from the people who worked along side him-some made me laugh and some made me cry-some with pictures I had never seen before-he looked happy -I know he use to say how much he loved his job and I know that some of his happiest times had been on tour with the Alarm.
Thank you for all the wonderful comments and messages of condolences -everyone has been so very kind -we have appreciated and read them all. One comment that has stuck in my mind ..... .. he was truly courageous man who lived a life completed early rather than a life cut short.
The fight to raise awareness carries on -I still have bands to sell.
Thursday, 1 December 2011
Andrew - 7th Jan 1953 - 1 st December 2011
Andrew lost his very brave and courageous battle with MND this evening
I`am so very proud and privileged to have been your sister- Thank you for putting up with me and for giving us the family so many happy wonderful memories ! Rest in peace dear bro, we love and will always love you very much xx
I`am so very proud and privileged to have been your sister- Thank you for putting up with me and for giving us the family so many happy wonderful memories ! Rest in peace dear bro, we love and will always love you very much xx
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