World stroke day on Friday29th October turned into a very big thing much bigger thing than we all thought
When I was talking to Mike Morris a Cheshire governor, what seems so long ago about holding some event in Neurosupport when we had the meet the Walton centre governors back in June we spoke at length about what we could do aand after a few weeks iI haad thought that we comr do something about memory and movement but when I saw that it was world stroke day on 29th October it made me think that the event could be stroke and with the help of Maureen Kelly cheif exec of Neurosupport and Margaret Matthews along with Jeanette Lunt of the Stroke Association the day seemed poossible.
After talking to Deborah Morris of the Royal Liverpool hospital we all joined forces to promote and plan the day and the 1 in 6 was born
On the day we had the event opened byMaureen Walsh from radio Merseyside who gave us an insight to something that happened to her which was a small stroke but slightly more complex even the BBC turned up after filming a young couple were the husband had had a stroke while working away and was now recovered but wants to promote the condition so the BBC followed them fom home to Neurosupport filming parts of the day and also talking to the doctor who spoke about the effects of stroke the film was later shown that night .
Just a big thank you to everyone who turned up on the day and made ita big success
Alan Clark
Saturday 30 October 2010
Friday 15 October 2010
time goes so quickly
In the last edition of Neuro News when i gave a shorten version of what happened to myself when in early 96 our life changed i had published some of the story of how i ended my working life? as a volunteer so here is the full article at last
THE STORY OF A CARER, ALLEGEDLY AND WHY DAFFODILS MEAN SO MUCH
The story started in early 1996 when I found my wife struggling on the bathroom floor after being sick from a violent headache, but I think I need to rewind the story a bit to earlier in that day when our life changed forever, when we left the old one behind and found a new one.
We had been to Mold early that morning to visit an antique fair and we had bought a figurine of a boy and girl, a hobby that we both enjoy and still do but without the money to buy too many these days although we still find it if something takes our eye that is not too expensive. We had the use of a relatives car and they were due back from holiday so this was the last weekend and we were going to make the most of it, hence the visit to Mold and we were going to stay out but my wife said she felt unwell, sick. When we arrived home our next door neighbour was having car problems and could I help him bleed his brakes, so my wife went in and I helped with the car, but when I went in a bit later I found my wife lying on the bathroom floor and complaining of a violent headache and being sick and with my help she went to bed and the headache came and went over the next couple of days so I called our own GP who gave her some tablets and said to contact him if it got no better. By the end of the week no better was what it was so we called him again on the Friday and he called an ambulance as we headed for our local hospital.
A funny aside to that day was that the figurine was on display, unwrapped and in pride of place in the hall where it still sits to this day all of course before the bathroom incident.
As you can imagine a bad headache does not have the same priority as other patients so we waited what seemed and was hours with just seeing a nurse who took the history. Eventually we saw a doctor and he found a bed and a lumbar puncture was done as one of the tests and of course they found blood and a transfer to the old Walton Hospital was needed I found this out when I phoned the next morning as I had been sent home around 9.00pm. As it was the weekend the scanner was not staffed, I think, so the scan was done on Monday and the doctor wanted to see me that night when I came to visit. He explained that a bleed in the brain had been the cause and drew a picture of what had happened, a bit like a blackberry bursting and we need to put a clip on the neck. The conversation after we shave the head and fold back the skin all went in a blur as we need to do this tomorrow or it will happen again and she could die.
The next day Tuesday came and my next door neighbour gave me a lift so I could see my wife before the operation. When I saw her waiting in the bed we talked about her own mother, who at the same age 49 had died of a brain haemorrhage so you can imagine how she felt as she says the man in the green wellies came for her.
So what do you do when you have to wait 3-4 hours while the operation that will save your wife’s life is going on? For me the answer was simple you feed the ducks. As we had both worked together and led a very hectic working life in Liverpool’s city centre we now lived by Sefton Park, which is at the bottom of our road, it had become a haven for us and the simple pleasure of walking around the park and feeding the ducks had became a routine to us so I feed the ducks, sat, waited and wondered of how things would turn out. This was the time of PMP pre mobile phones unless you remember the house brick that was a phone. So I went home and phoned the hospital all had gone well and the doctor will see you later to explain. Seeing my wife in a hospital intensive care bed with lots of tubes was for me a scary thing when hospital was a very alien place, we had both led reasonable healthy lives and only visited when someone else was there not your own wife. A couple of weeks was the verdict, words were a bit muddled and phoning her sisters turned into a comedy sketch but that was solved by a piece of paper with all the numbers on her memory was not the same it will get better was an answer but short term memory may be not. However going into the third week and all was not going as well as they thought, she had no appetite and was losing weight a good thing she said so another scan revealed their was some swelling in the brain and a course of steroids was the answer.
By week 4 my own body was going into shutdown, all the not eating right and drinking had caught up with me and I was in bed for around the time that my wife improved . A friend of mine said she got better because I stopped going to see her he thought the coincidence was too much. Anyway I recovered just in time to see my wife recover fully and she was coming home.
The weeks that followed seemed strange to everyone, family and friends helped a lot in the early stages but apart from the shaved it seemed ok. Ok is a word we still use when people ask how my wife is, it is easier than to say depressed, fatigue, lost for words, the constant checking, afraid to leave the house without me and just not right. Things that we have learned to live with over the years and the family see the looking well (Make-up) walking and talking and think that everything is ok and if I am honest I suppose it is we have found a very different rhythm of life that the one we had before. After 12 months she was discharged but remained unable to work ever again.
So why do daffodils mean so much. After 5 weeks of not leaving the house, the shaved head down one side is not the best look on a woman but with gentle coaxing we had a walk down to Sefton Park and sat on a bench surrounded by daffodils in full bloom for what seemed a life time, we both knew that we had been lucky and life as we knew it had changed forever, we had been given that second chance. Why allegedly a carer, I am not sure who looks after who, I myself have some health problems and as we both grow older we have slipped into a rhythm of life that suits us both.
As I write this in spring of 2010, 14 years later when the daffodils are still in bloom but some are fading and dying I remember that time on the park bench, we both do that wonderful day we sat surrounded by daffodils. Life has been different for us both, work was not possible but volunteering for me was. We had gone to a meeting about brain haemorrhage and a possible support group that was held in the Glaxo Centre, known now by the name Neurosupport in Liverpool city centre. Over the coming months we went to meetings at this centre and by now 2 years had passed and when I heard they were looking for volunteers to help staff the patient information desk at the new Walton Centre I signed up “To give something back” a phrase you hear a lot in volunteering and so in September 1998 I went on an induction course and have been there ever since. My role has changed over the years, although I still volunteer, I now represent volunteers at staff meetings, write a newsletter, and write on our own blog and with my long association with The Walton Centre I have also become a hospital governor when it became a Foundation Trust in 2009. One of my other volunteering roles is that am a committee member for The Brain Haemorrhage Support Group a cause very close to my heart. To give my time and to help others in a similar situation, this has given me the greatest reward of all. So when our life changed in 1996 maybe things do happen for a reason who knows. What I do know is that every year we always enjoy the daffodils and remember.
THE STORY OF A CARER, ALLEGEDLY AND WHY DAFFODILS MEAN SO MUCH
The story started in early 1996 when I found my wife struggling on the bathroom floor after being sick from a violent headache, but I think I need to rewind the story a bit to earlier in that day when our life changed forever, when we left the old one behind and found a new one.
We had been to Mold early that morning to visit an antique fair and we had bought a figurine of a boy and girl, a hobby that we both enjoy and still do but without the money to buy too many these days although we still find it if something takes our eye that is not too expensive. We had the use of a relatives car and they were due back from holiday so this was the last weekend and we were going to make the most of it, hence the visit to Mold and we were going to stay out but my wife said she felt unwell, sick. When we arrived home our next door neighbour was having car problems and could I help him bleed his brakes, so my wife went in and I helped with the car, but when I went in a bit later I found my wife lying on the bathroom floor and complaining of a violent headache and being sick and with my help she went to bed and the headache came and went over the next couple of days so I called our own GP who gave her some tablets and said to contact him if it got no better. By the end of the week no better was what it was so we called him again on the Friday and he called an ambulance as we headed for our local hospital.
A funny aside to that day was that the figurine was on display, unwrapped and in pride of place in the hall where it still sits to this day all of course before the bathroom incident.
As you can imagine a bad headache does not have the same priority as other patients so we waited what seemed and was hours with just seeing a nurse who took the history. Eventually we saw a doctor and he found a bed and a lumbar puncture was done as one of the tests and of course they found blood and a transfer to the old Walton Hospital was needed I found this out when I phoned the next morning as I had been sent home around 9.00pm. As it was the weekend the scanner was not staffed, I think, so the scan was done on Monday and the doctor wanted to see me that night when I came to visit. He explained that a bleed in the brain had been the cause and drew a picture of what had happened, a bit like a blackberry bursting and we need to put a clip on the neck. The conversation after we shave the head and fold back the skin all went in a blur as we need to do this tomorrow or it will happen again and she could die.
The next day Tuesday came and my next door neighbour gave me a lift so I could see my wife before the operation. When I saw her waiting in the bed we talked about her own mother, who at the same age 49 had died of a brain haemorrhage so you can imagine how she felt as she says the man in the green wellies came for her.
So what do you do when you have to wait 3-4 hours while the operation that will save your wife’s life is going on? For me the answer was simple you feed the ducks. As we had both worked together and led a very hectic working life in Liverpool’s city centre we now lived by Sefton Park, which is at the bottom of our road, it had become a haven for us and the simple pleasure of walking around the park and feeding the ducks had became a routine to us so I feed the ducks, sat, waited and wondered of how things would turn out. This was the time of PMP pre mobile phones unless you remember the house brick that was a phone. So I went home and phoned the hospital all had gone well and the doctor will see you later to explain. Seeing my wife in a hospital intensive care bed with lots of tubes was for me a scary thing when hospital was a very alien place, we had both led reasonable healthy lives and only visited when someone else was there not your own wife. A couple of weeks was the verdict, words were a bit muddled and phoning her sisters turned into a comedy sketch but that was solved by a piece of paper with all the numbers on her memory was not the same it will get better was an answer but short term memory may be not. However going into the third week and all was not going as well as they thought, she had no appetite and was losing weight a good thing she said so another scan revealed their was some swelling in the brain and a course of steroids was the answer.
By week 4 my own body was going into shutdown, all the not eating right and drinking had caught up with me and I was in bed for around the time that my wife improved . A friend of mine said she got better because I stopped going to see her he thought the coincidence was too much. Anyway I recovered just in time to see my wife recover fully and she was coming home.
The weeks that followed seemed strange to everyone, family and friends helped a lot in the early stages but apart from the shaved it seemed ok. Ok is a word we still use when people ask how my wife is, it is easier than to say depressed, fatigue, lost for words, the constant checking, afraid to leave the house without me and just not right. Things that we have learned to live with over the years and the family see the looking well (Make-up) walking and talking and think that everything is ok and if I am honest I suppose it is we have found a very different rhythm of life that the one we had before. After 12 months she was discharged but remained unable to work ever again.
So why do daffodils mean so much. After 5 weeks of not leaving the house, the shaved head down one side is not the best look on a woman but with gentle coaxing we had a walk down to Sefton Park and sat on a bench surrounded by daffodils in full bloom for what seemed a life time, we both knew that we had been lucky and life as we knew it had changed forever, we had been given that second chance. Why allegedly a carer, I am not sure who looks after who, I myself have some health problems and as we both grow older we have slipped into a rhythm of life that suits us both.
As I write this in spring of 2010, 14 years later when the daffodils are still in bloom but some are fading and dying I remember that time on the park bench, we both do that wonderful day we sat surrounded by daffodils. Life has been different for us both, work was not possible but volunteering for me was. We had gone to a meeting about brain haemorrhage and a possible support group that was held in the Glaxo Centre, known now by the name Neurosupport in Liverpool city centre. Over the coming months we went to meetings at this centre and by now 2 years had passed and when I heard they were looking for volunteers to help staff the patient information desk at the new Walton Centre I signed up “To give something back” a phrase you hear a lot in volunteering and so in September 1998 I went on an induction course and have been there ever since. My role has changed over the years, although I still volunteer, I now represent volunteers at staff meetings, write a newsletter, and write on our own blog and with my long association with The Walton Centre I have also become a hospital governor when it became a Foundation Trust in 2009. One of my other volunteering roles is that am a committee member for The Brain Haemorrhage Support Group a cause very close to my heart. To give my time and to help others in a similar situation, this has given me the greatest reward of all. So when our life changed in 1996 maybe things do happen for a reason who knows. What I do know is that every year we always enjoy the daffodils and remember.
NEURO NEWS— NEWSLETTER SEPTEMBER / OCTOBER ISSUE 17
OUR BBQ ‘DAY IN’ - 5TH SEPTEMBER 2010
At our volunteer’s meeting in June, some discussion turned to the volunteer’s day out and where we should go. It had been mentioned earlier in the year and talk of trips on steam trains, river boat rides or a visit to gardens had all been discussed. Carolyn had worked to find out costs etc, when Pauline, our receptionist, had the idea (on June 22nd to be precise), of a ‘Day In’. That is a day out where we all stay in! and so after lot’s of yeses and that sounds like a good idea! a BBQ party was born.
So, in August we had our first and last planning day. What food should we have? who would do the cooking, should we charge? what about a vegetarian option, drinks and Karaoke? (Pat and Dianne are desperate for a Karaoke party), but they were headed off at the pass, as they say in the old cowboy movies .
Music in the background was the order of the day, along with a small charge of £5.00 to include 2 guests. It gave family and friends a chance to see our workplace, where we spend our time as volunteers. The option to bring your own beer and wine, if you wanted to, held a certain charm for me, as an ex-licensee (who now drinks cups of tea in pubs, most of the time, these days). For once the car would stay at home and the magic bus pass would come into play, so with a bag of ice, courtesy of our local supermarket, along with some beer, and spirit in every sense, Sally and I set off, with a friend we had invited, to enjoy the day. We arrived in plenty of time, and things were well under way, after a technical hiccup or 2 (the table top was burning, due to the heat of the throwaway BBQ’s), but these minor problems were soon sorted out. Tom, Maureen's husband, with his able helpers (Neurosupport staff) and Thomas the Jones lending his helpful hands, were in full charge of the BBQ.
Having a BBQ was always going to be a problem, given our English weather, and although I had arrived in shorts to try and encourage the sun to show, it managed to keep itself hidden most of the day. With the help of a gazebo, Tom did a great job cooking the food, while we and 2 of our trustees Mike Boggild and David Britt, all enjoyed the results of his labour inside. There was plenty to eat and drink, served up by some wonderful people young and old. The food was
delicious, burgers, sausages, salads and the usual mixture of rice etc: not forgetting the strawberry gateau. A wonderful day, with good food, company and laughter enjoyed by all. I think someone said that laughter is good for you and if that's true, we must have all come away feeling better, because there was plenty of laughter, on the day we had our ‘Day In’.
The photos were taken by our very own poet laureate, Gordon W. Milward, plus part of this article as well, so thank you, Gordon for your help in putting this together.
Alan Clark (& Gordon W. Milward).
VOLUNTEER UPDATE
Wendy Mitchell, one of our volunteers on reception, (who has done more years than me as a volunteer) will be going into The Walton Centre for an operation at the end of September. From our conversations it may be a long recovery and I along with all of you and the staff would like to wish her well.
Also this month we will see some new faces starting the road to volunteering when they attend the induction course, so if you see any new faces say “Hello” and introduce yourself.
CONTACT DETAILS:
If you have something that you would like to include in Neuro News, contact me on my email alan.clark200@hotmail.com or leave details at reception. Check out our website http://neuronewsletterspart1.blogspot.com/
You can also find the link through the Neurosupport website.
THEATRE TICKETS
One of our volunteers, Janet, can get discounted tickets for certain shows. She has obtained a discount for the following 2 shows:
Calendar Girls £17.00 on Wednesday, 29th or Friday, 1st October
Sound of Music £16.50 on Tuesday, 12th October (first night)
A third option is behind you, Oh no it’s isn’t! Oh yes it is (that time of year)! Panto time– and taking names for:
Aladdin - (possibly) on Thursday, 16th December
Janet can check for alternative available dates and supply leaflets if needed. If you would like to take advantage of these offers or speak to Janet. You can contact her by leaving a message in the library pigeon hole or email info@neurosupport.org.uk
‘IT’S A KNOCKOUT’
The 22nd of August saw Neurosupport make it’s very first venture into the alien world of ‘It’s a Knockout’. Our team consisted of staff, volunteers, and I think someone who just happened to be standing in the wrong place, at the wrong time, signed the form and he was in, (our joker in the pack, our very own “Ringer”), but more of that later. The team threw themselves, quite literally in some cases, (as the pictures show) into the spirit of the day.
I took the easier(?) option, (that’s my hat, chair & balloons in the photo) and helped on our information stall, (which I have been doing on and off since 28th September 1998 when I first started my induction course). Our tombola had it’s second airing, with prizes donated by all, as well as footballs, soft teddies and (pink?) elephants, to encourage people to the stall. It was again a great success. I even got to talk to our very own Lord Mayor.
However while myself and others were enjoying the sunshine and I must say, a more sedate approach to the day, things on the other side of the field were developing “what have I got myself into” thoughts. A certain Geoff Shaw, our volunteer on reception, who in his words thought he was “reasonably fit”, will now give you his story. He is the fit(!) looking one on the left of the picture. Alan Clark.
************************
I awoke to beautiful sunny Sunday morning, birds singing, church bells ringing and It’s a Knockout calling. A shiver went down my spine (and the rest of my body later!!) but presuming this to be another sign of fairly advanced middle age, I worried not and set off with gusto to Mossley Hill Athletics ground for Fun Fun Fun. Everyone was in an expectant mood as the music system beat out a fair rhythm, and the tension mounted before the games began (I know now what it must be like before the World Cup Final). I took part in most of the events, and handsomely won the sack race and rope climbing (slowest time wins, right?) got wet and eventually wandered off into the sunset with a vacant look on my face. (First time for everything).
Many other charities from Liverpool took part, and judging by the amount of water most people were wringing out of their tee shirts, everybody had a great time. Hopefully, if I’m not too busy doing a shoot for The Bionic Man this time next year, I’ll be there. Bring it on!!!! Geoff Shaw.
P.S.
We did finish a respectable 14th of the 17 teams who took part and as Geoff says “Bring it on”, and our Joker? I think he had the last laugh, he was seen entering the beer tent never to be seen again. Alan.
Remembering Malcolm Hawkins
This photograph is how I shall always remember my ‘mate’ Malcolm. I first met him when he arrived at the (then Glaxo) Centre some years ago. He had retired from work, following an operation to remove brain tumours, and had come to join the library team. As time rolled along, I learnt he was a passionate photographer, who did not hold with these new ‘fan-dangled’ digital cameras, and I watched him determinedly look for his favourite film & paper, (as Kodak and other well known companies stopped producing them) rather then be forced to ‘downgrade’ to a digital. He was a keen member of the local camera club in West Kirby, where he lived; his work has been displayed in various venues, won several competitions, both in the UK and abroad. His unique way of looking at life, showed in his pictures and was a pleasure to see. As anyone who has seen, bought (or been gifted) one of his photographs will know. So it was a surprise to learn one set of his recent photographs, had been taken with one of those fan–dangled gadgets. He had been persuaded, via one of his fellow snappers, to borrow (& use) a digital camera. Malcolm had found a whole new way to express himself and there was no stopping him now. He loved music, especially jazz, and looked forward to the Matthew Street Festival, where he mixed his joy of music with his love of photography. He liked to go to music nights in the local wine bars & pubs, preferably on a curry night, and if he heard music & liked it, would often just follow the sound to find the source. This is how he found the South African drums, he joined the band , learnt to play the drums and performed with them at the Empire in Liverpool. Sadly an event I missed.
When Suduku puzzles arrived, he quickly became an avid fan, and tried to impart the secret to completing them to me (without success, as my brain wouldn’t function in the way required). He often spent his train journey home solving them. However they did not stop him falling asleep (a side effect of the tumours) on the train and would wake to find he had been at his station for some time….luckily he lived at the end of the line and the staff checked the carriages for left luggage.
Malcolm’s battle with his medical condition was constant and ongoing. In the Autumn of last year, he was told he would need to have an (his 3rd) operation to remove yet another tumour. Sadly, whilst the tumour was removed, complications during and following the procedure, left him paralysed. He spent the next 10 months in the Walton Centre before being moved to a nursing home, where he died at the end of August.
Malcolm’s passion for life, his humour and need to explore and learn new things, I found inspirational and daunting at the same time. He never seemed to let things get him down and took life on the chin, no matter what it threw at him. His love for his wife, Moira, their family and life long friends (‘the gang’) shone through.
Malcolm, you were a good friend and I will truly miss you. Su xx
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