News
[August 20, 2004 01:32] Newspaper interviewI appear in the TES which is the teachers' newspaper.
The ideal week as it's the week of exam results!
Hopefully this site will be bombarded with visitors...
The ideal week as it's the week of exam results!
Hopefully this site will be bombarded with visitors...
[August 13, 2004 08:41]
Support ADDER!
There are also a number of people running in the Great North Run who will be raising funds for ADDER
Hopefully they will have individual sponsorship pages - I will then post about them here.
Both TDS and ADDER - as does, indeed, this site - raise money to help those with DYSTONIA.
Hopefully they will have individual sponsorship pages - I will then post about them here.
Both TDS and ADDER - as does, indeed, this site - raise money to help those with DYSTONIA.
[August 13, 2004 08:41]
Support Christine!
We have had an email from Christine Chapman.
She writes:
"Some of you may be aware that on September 5th I will be running the Flora light marathon in aid of the Dystonia Society with some of my members. To those who are aware of my fitness level this will be like completing a personal marathon for myself!! Some of you may be aware of the organisation and the condition. For those of all who believed I had an an obscure job within the Charity sector I have a strong enthusiasm and a real role to play in raising awareness of this condition and providing support for those with dystonia throughout London and the South East. It is a very dehabilitating illness which can often cause much distress to the person with Dystonia and their families and can be very isolating and painful. If you feel you would like to sponsor me (or any of my colleagues for which I can provide details) and help this small but very important organisation in this event please complete the sponsorship form attached and return. If not please do not worry - I will still talk to you (some of you may be disappointed at this!!)"
If anyone would like a copy of the sponsorship form please email me at:
chris@osl-ltd.co.uk and I will then pass the email to Christine. She is to be congratulated on her efforts!
She writes:
"Some of you may be aware that on September 5th I will be running the Flora light marathon in aid of the Dystonia Society with some of my members. To those who are aware of my fitness level this will be like completing a personal marathon for myself!! Some of you may be aware of the organisation and the condition. For those of all who believed I had an an obscure job within the Charity sector I have a strong enthusiasm and a real role to play in raising awareness of this condition and providing support for those with dystonia throughout London and the South East. It is a very dehabilitating illness which can often cause much distress to the person with Dystonia and their families and can be very isolating and painful. If you feel you would like to sponsor me (or any of my colleagues for which I can provide details) and help this small but very important organisation in this event please complete the sponsorship form attached and return. If not please do not worry - I will still talk to you (some of you may be disappointed at this!!)"
If anyone would like a copy of the sponsorship form please email me at:
chris@osl-ltd.co.uk and I will then pass the email to Christine. She is to be congratulated on her efforts!
[August 13, 2004 07:23]
The Guardian Newspaper
I have just sent an article idea to the Guardian journalist Tash Shifrin
Hopefully they'll publish....
I have also sent an idea to Men's Fitness Magazine - the UK version suggesting they do an article about people who are disabled and want to use a gym.
Naturally I mentioned this site...
Hopefully they'll publish....
I have also sent an idea to Men's Fitness Magazine - the UK version suggesting they do an article about people who are disabled and want to use a gym.
Naturally I mentioned this site...
[August 12, 2004 09:17]
Paralympics
Please visit HERE and support Fran!
Fran is the daughter of DUNCAN WILLIAMSON who has done a lot to help this site and therefore those with dystonia.
Duncan is delighted and proud to announce that she is representing Great Britain at the up and coming Paralympics in Athens. Fran has been swimming for just a few years now and has represented her club, England and Great Britain all over the world. Fran won't tell you that when she was younger she was absolutely terrified of water: so she's beaten a few demons to get where she has!
Please visit HERE and support Fran!
Fran is the daughter of DUNCAN WILLIAMSON who has done a lot to help this site and therefore those with dystonia.
Duncan is delighted and proud to announce that she is representing Great Britain at the up and coming Paralympics in Athens. Fran has been swimming for just a few years now and has represented her club, England and Great Britain all over the world. Fran won't tell you that when she was younger she was absolutely terrified of water: so she's beaten a few demons to get where she has!
Please visit HERE and support Fran!
[August 9, 2004 08:31]
Base01
I have been in touch with Base01
There are some posts about them here
To summarise, they produced a load of advertising material for TDS totally FREE but TDS elected instead to pay for their marketing and did not use Base01.
Base01 have now given their work to dystonia-support4u to use as we wish to maximise the benefit for the dystonia community.
There are some posts about them here
To summarise, they produced a load of advertising material for TDS totally FREE but TDS elected instead to pay for their marketing and did not use Base01.
Base01 have now given their work to dystonia-support4u to use as we wish to maximise the benefit for the dystonia community.
[August 9, 2004 08:27]
Dystonia Support4u Committee
I now have two people who have offered to be on the Support4u committee. More details will appear soon.
If anyone else wants to join then the rationale is as follows:
Forming a Cyber Committee
I am hoping to increase the services offered by www.dystonia-support.co.uk. To do this I’ll need help. The big advantage of a cyber committee being there’d be no travel and yet you could still be more involved.
www.dystonia-support4u.co.uk is not a Charity, has no Committee etc so there’s no-one to be consulted.
So I thought I’d outline what I’d like to achieve by having a ‘Virtual Committee’.
I’d send stationery out to all committee members. This would enable them to write to whoever by snail mail on ‘headed notepaper’. The author could sign himself as ‘Committee Member’.
This would mean that you could, for example, write to someone locally who hasn’t Internet access but nonetheless would benefit from knowing about dystonia and knowing someone with dystonia.
Being on the Committee would also involve opportunities for empowerment. There are three ways this would come into effect:
There is a site called www.freeskills.com. Some of the courses are free, some not. If you wanted to go on a course that was not free then there’d be a possibility of ’dystonia-support4u’ paying for you.
‘Teach Yourself’ manuals could be provided for you if you wished to know more about, for example, web design. These would be free.
European Funding has been received so: http://www.computapac.co.uk/Esf.htm offer training courses
In all three instances, your IT skills would improve. (I know little about web design, by the way so we’re all in the same vote. I am a very fast TWO FINGER typist, that’s all )
Often when people are diagnosed with dystonia they gain a lot from a ‘friendly phone call’. As a committee member, I hope you’d be willing to make the occasional phone call if required. (We’ll get onto expenses later)
I’d hope also that you’d occasionally be prepared to email someone who needs help/advice/shoulder to cry on and his or her name is given to me. Occasionally ADDER ‘pass on’ contacts in the South and thus this contact would be part of the service provided.
You’d also have direct input to the dystonia site. I’m probably going to have a second site built with the aim being for any committee member to put on the site anything they wish to do with dystonia. Thus it would be like having your own ‘section’ within the overall dystonia site. I’d send you the means of accessing the site and leave it to you to put stuff up. Maybe you’re not sure how to do this (neither am I!) and thus we’d all learn together.
Money
The ‘Committee’ work would of course be totally unpaid. All expenses would be covered such as postage and use of telephone. This would come out of any grants/finance awarded dystonia-support4u. If you decided to stop being a committee member then any books/DVDs/tapes would have to be sent back to pass on to other members.
Any expense over £10 would have to be cleared first because at present the only regular source of finance for dystonia-support4u is from my earnings last year.
Committee Meetings
There wouldn’t be any except virtually. I’d set up a Yahoo Group (or similar) and we could all ‘chat’ on this. This group would solely be for activities/advice etc and so wouldn’t be a ‘chatty’ group like other groups.
Finance and Grants
One other very important role of the Committee Member would be to apply for Grants etc. I often scour the net looking for grants and, if there was a committee, I’d be able to email ‘X’ and ask them to apply for a Grant for our work. That way it wouldn’t be me doing the entire endless form filling. Also if you applied then you could do any follow-up phone calls etc.
Publicity/awareness
The last advantage of a committee is that if you had time you could help raise awareness by writing to letters Pages or Newspapers etc ‘on behalf of dystonia-support4u’ rather than just as an individual.
Summary
As a Committee Member you’d gain by:
Being more involved with decisions and directly helping others
Any training you undertook
The immense satisfaction from directly helping other with dystonia
Those with dystonia would gain by:
Having more people involved in dystonia-support4u and therefore more help available
Not just me doing all the contact etc and thus a more organised system of help
Plus if I’m ill or on holiday or whatever that would not mean everything came to a grinding halt in dystonia-support4u…..
There – that’s it.
If anyone else wants to join then the rationale is as follows:
Forming a Cyber Committee
I am hoping to increase the services offered by www.dystonia-support.co.uk. To do this I’ll need help. The big advantage of a cyber committee being there’d be no travel and yet you could still be more involved.
www.dystonia-support4u.co.uk is not a Charity, has no Committee etc so there’s no-one to be consulted.
So I thought I’d outline what I’d like to achieve by having a ‘Virtual Committee’.
I’d send stationery out to all committee members. This would enable them to write to whoever by snail mail on ‘headed notepaper’. The author could sign himself as ‘Committee Member’.
This would mean that you could, for example, write to someone locally who hasn’t Internet access but nonetheless would benefit from knowing about dystonia and knowing someone with dystonia.
Being on the Committee would also involve opportunities for empowerment. There are three ways this would come into effect:
There is a site called www.freeskills.com. Some of the courses are free, some not. If you wanted to go on a course that was not free then there’d be a possibility of ’dystonia-support4u’ paying for you.
‘Teach Yourself’ manuals could be provided for you if you wished to know more about, for example, web design. These would be free.
European Funding has been received so: http://www.computapac.co.uk/Esf.htm offer training courses
In all three instances, your IT skills would improve. (I know little about web design, by the way so we’re all in the same vote. I am a very fast TWO FINGER typist, that’s all )
Often when people are diagnosed with dystonia they gain a lot from a ‘friendly phone call’. As a committee member, I hope you’d be willing to make the occasional phone call if required. (We’ll get onto expenses later)
I’d hope also that you’d occasionally be prepared to email someone who needs help/advice/shoulder to cry on and his or her name is given to me. Occasionally ADDER ‘pass on’ contacts in the South and thus this contact would be part of the service provided.
You’d also have direct input to the dystonia site. I’m probably going to have a second site built with the aim being for any committee member to put on the site anything they wish to do with dystonia. Thus it would be like having your own ‘section’ within the overall dystonia site. I’d send you the means of accessing the site and leave it to you to put stuff up. Maybe you’re not sure how to do this (neither am I!) and thus we’d all learn together.
Money
The ‘Committee’ work would of course be totally unpaid. All expenses would be covered such as postage and use of telephone. This would come out of any grants/finance awarded dystonia-support4u. If you decided to stop being a committee member then any books/DVDs/tapes would have to be sent back to pass on to other members.
Any expense over £10 would have to be cleared first because at present the only regular source of finance for dystonia-support4u is from my earnings last year.
Committee Meetings
There wouldn’t be any except virtually. I’d set up a Yahoo Group (or similar) and we could all ‘chat’ on this. This group would solely be for activities/advice etc and so wouldn’t be a ‘chatty’ group like other groups.
Finance and Grants
One other very important role of the Committee Member would be to apply for Grants etc. I often scour the net looking for grants and, if there was a committee, I’d be able to email ‘X’ and ask them to apply for a Grant for our work. That way it wouldn’t be me doing the entire endless form filling. Also if you applied then you could do any follow-up phone calls etc.
Publicity/awareness
The last advantage of a committee is that if you had time you could help raise awareness by writing to letters Pages or Newspapers etc ‘on behalf of dystonia-support4u’ rather than just as an individual.
Summary
As a Committee Member you’d gain by:
Being more involved with decisions and directly helping others
Any training you undertook
The immense satisfaction from directly helping other with dystonia
Those with dystonia would gain by:
Having more people involved in dystonia-support4u and therefore more help available
Not just me doing all the contact etc and thus a more organised system of help
Plus if I’m ill or on holiday or whatever that would not mean everything came to a grinding halt in dystonia-support4u…..
There – that’s it.
[August 9, 2004 08:25]
Dystonia Photo Exhibition
I have been in touch with the producer of this exhibition
I have suggested she consider doing a 'Dystonia in Pictures' exhibition and/or book.
She replied: "The idea of Dystonia in pictures sounds exciting. Perhaps we can discuss more after I get my
dissertation out of the way. I have some ideas how to approach this. It's be good exercise of photo journalism. "
Hopefully...watch this space!
I have suggested she consider doing a 'Dystonia in Pictures' exhibition and/or book.
She replied: "The idea of Dystonia in pictures sounds exciting. Perhaps we can discuss more after I get my
dissertation out of the way. I have some ideas how to approach this. It's be good exercise of photo journalism. "
Hopefully...watch this space!
[August 2, 2004 18:24]
Dystonia, depression, laughter and Toni Cooke
It is not often I am able to strongly recommend something without trying it myself but this time I will. I have just finished a long conversation with Toni Cooke. Her contact details are:
UK is 07799 615241.
email: tonicook@libero.it
Toni Cooke runs Laughter Clubs. This is an article she wrote for the Multiple Sclerosis Society:
"When was the last time you laughed spontaneously, just for the joy of being happy? Learn about "Laughter Clubs", which use laughing as a way to generate positive psychological effects.
Toni Cook introduces "Laughter Clubs":
When was the last time you laughed spontaneously, just for the joy of being happy? Laughter has a scientifically-proven beneficial effect on the body, mind and spirit. Research shows that as children we laugh up to 400 times per day, while the average adult laughs a meagre 15 times, thus between childhood and adulthood we lose 385 laughs every day! Stress and tension have become the daily norm instead of happiness and inner peace, while regularly experiencing joy seems unimaginable for the vast majority.
Various therapeutic ideas have emerged during the past thirty years to redress this imbalance. Clown therapy to relieve the stress of hospitalisation is now an accepted and growing aid to treatment, especially with children. Dr Robert Holden, founder of “The Happiness Project”, created and ran the first NHS Laughter Clinic, using positive thinking, meditative techniques and games to stimulate recovery in patients suffering from a range of physical and mental complaints. More recently, Dr Madan Kataria, a Bombay GP, started Laughter Club International which now has over 2,000 clubs worldwide, where people do “Laughter Yoga” together and laugh “for no reason”.
A laughter session is conducted by a trained leader who demonstrates each laugh and oversees group participation. Laughter is “fake” and is done as exercises called “Laughter Yoga”, based on yogic principles of deep breathing and relaxation. Jokes are not necessary. The group laughs together on command, which is why depressed people, who don’t usually find anything funny, can also reap the benefits of joining in.
The benefits of laughing are not exclusively based on the release of “happy chemicals” – endorphins - from the brain, but also on the massage effect on internal organs and the increased intake of oxygen and expulsion of carbon dioxide provoked by really hearty laughter. Research has shown that the release of endorphins is not dependent on how humorous a person finds something but is actually stimulated by the physical movement of the mouth and eyes during laughter. This means that if you “fake it”, i.e. you simulate laughter on your face, your brain will release the chemical regardless of how you feel at the emotional level. This has important implications for people suffering from depression, stress and pain, who usually don’t feel much like laughing spontaneously. Other research has demonstrated that throat mucus antibodies increased after a 20-minute laughter session and that Natural Killer Cells (those that fight cancer, for example) become more potent after laughing.
Positive psychological effects include: an increase in concentration, sociability, cooperation, creativity and self-confidence, plus better ability to cope with stress. For these reasons Laughter Clubs are also run within factories, companies and public utilities in India and other parts of the world. Clubs are free and open to all. In India they meet daily; in the West they tend to be less frequent and may meet weekly or monthly.
As this technique was developed by a medic who practised yoga as well as medicine, the contraindications of laughing have also been considered. Mostly they are based on common sense but include: unstable angina, severe external haemorrhoids, pregnancy and patients recovering from recent abdominal surgery, amongst others. From this it might appear that laughing can help you to stay healthy and more positive but may not help when you are already ill. The current laughter session structure only needed slight adjustments to make it available to the disabled and more chronically sick and I visited Bombay in December 2003 to develop this idea with Dr Kataria.
After training as a Leader in September 2002, I started the Laughter Club in Poggibonsi, Italy in January 2003. That summer I gave a talk in Milton Keynes to nine people with MS, explaining the benefits of laughter and what we do in a session. When we tried some laughs I noticed that after each one they would discreetly prop themselves up against a table or chair while I explained the next. Nobody said anything, but I was aware that, even though they could walk, their mobility and energy levels would never permit them to participate in a full club session, which can be quite energetic. Had they been in wheelchairs the situation would have been more difficult. We did five different laughs together, which everyone thoroughly enjoyed, and wanted to experience again. The problem was that they lacked a leader to coordinate and activate their sessions.
This experience started me thinking about how these people, who generally suffer pain and depression as part of their condition, in addition to various other symptoms, could be missing out on a very valid and free method of relieving depression and pain – and that there are many more like them, and suffering from other disabling conditions, who would find it impossible to physically participate in the existing club format.
Thanks to a Lottery Commission Millennium Award grant via the Multiple Schlerosis Society, I studied with Dr Kataria to become a Leader Trainer, operating within ethical guidelines to train leaders who could set up clubs for people with Multiple Schlerosis and other disabilities. Two free workshops were held in the UK in March 2004 and sixteen volunteer leaders were trained, six of whom were living with MS. They have returned to their various communities and started using this modified technique.
Feedback has been very positive. One group of 25 at Reading, of which 18 were in wheelchairs. Two yoga teachers from Bedford who have started incorporating Laughter Yoga into their residential courses with ME sufferers and others. Milton Keynes are finally starting their own club at the MS Therapy Centre – just nine months after that first talk! And what of the trainer? I have been asked to address the AGM of the Devon and Cornwall Region of the MS Society in September, which is apparently causing great excitement! The MS International Federation, which has member MS Societies in 42 countries has offered me space on their website to inform their members about this new possibility and I have been approached by a commercial group about giving after dinner addresses and demonstrations of laughing sessions at conference facilities in the UK. All in all, quite a lot to laugh about!
The initial funding came via the UK MS Society but in the future it is hoped to extend these clubs to people living with cancer or HIV and AIDS, to workers in stressful jobs or situations (including NHS and public sector workers), and any group in society which would like to experience the FREE benefits of laughing together for no reason. Clubs are free, with only a contribution towards the rent of a room, if necessary. It is hoped that some commercial sponsorship might help train leaders and set up some clubs in Eastern Europe, where disabled people do not enjoy the benefits system currently available in the more prosperous nations of the EEC and therefore endure financial hardship as well as their physical difficulties. This technique is truly international, because you can laugh in any language. Enquiries from other countries who would like to have some trained leaders would be very welcome.
Toni Cook is available for conference addresses, after-dinner speaking, information evenings, training events or two-day Laughter Club Leader training workshops (whether for standard club format or clubs for people living with disabling illnesses.) She is a certificated Spiritual Healer/Counsellor, an Australian Bush Flower Remedy therapist, studied “Teaching Happiness” with Dr Robert Holden, is a qualified TESOL English teacher, a trained Laughter Club Leader and Laughter Club Leader trainer. Her workshops have been described as “inspirational”, “fun”, “practical and informative”. Anyone who is interested in knowing more can contact Toni Cook via email at: Toni Cook or by phone/fax on 0039 0577 741206 (Italy). (More details of the Laughter Club International are on their website at Laughter Yoga
Toni is in the UK until August 25th. My suggestion, if possible, is for either (or both) the Dystonia Societies to invite Toni to make a presentation/run a workshop so they can see for themselves just how significant 'laughter' can be - after all, those with dystonia as much as anyone else with such a debilitating ailment need anything they can have to help don't they?
I hope visitors to this site read the article above and contact Toni.
I have bought the DVD and when it arrives from here I will be reviewing it as a product of use to those with dystonia - but the DVD is not aimed specifically at those with a disability...whereas Toni's workshops are.
UK is 07799 615241.
email: tonicook@libero.it
Toni Cooke runs Laughter Clubs. This is an article she wrote for the Multiple Sclerosis Society:
"When was the last time you laughed spontaneously, just for the joy of being happy? Learn about "Laughter Clubs", which use laughing as a way to generate positive psychological effects.
Toni Cook introduces "Laughter Clubs":
When was the last time you laughed spontaneously, just for the joy of being happy? Laughter has a scientifically-proven beneficial effect on the body, mind and spirit. Research shows that as children we laugh up to 400 times per day, while the average adult laughs a meagre 15 times, thus between childhood and adulthood we lose 385 laughs every day! Stress and tension have become the daily norm instead of happiness and inner peace, while regularly experiencing joy seems unimaginable for the vast majority.
Various therapeutic ideas have emerged during the past thirty years to redress this imbalance. Clown therapy to relieve the stress of hospitalisation is now an accepted and growing aid to treatment, especially with children. Dr Robert Holden, founder of “The Happiness Project”, created and ran the first NHS Laughter Clinic, using positive thinking, meditative techniques and games to stimulate recovery in patients suffering from a range of physical and mental complaints. More recently, Dr Madan Kataria, a Bombay GP, started Laughter Club International which now has over 2,000 clubs worldwide, where people do “Laughter Yoga” together and laugh “for no reason”.
A laughter session is conducted by a trained leader who demonstrates each laugh and oversees group participation. Laughter is “fake” and is done as exercises called “Laughter Yoga”, based on yogic principles of deep breathing and relaxation. Jokes are not necessary. The group laughs together on command, which is why depressed people, who don’t usually find anything funny, can also reap the benefits of joining in.
The benefits of laughing are not exclusively based on the release of “happy chemicals” – endorphins - from the brain, but also on the massage effect on internal organs and the increased intake of oxygen and expulsion of carbon dioxide provoked by really hearty laughter. Research has shown that the release of endorphins is not dependent on how humorous a person finds something but is actually stimulated by the physical movement of the mouth and eyes during laughter. This means that if you “fake it”, i.e. you simulate laughter on your face, your brain will release the chemical regardless of how you feel at the emotional level. This has important implications for people suffering from depression, stress and pain, who usually don’t feel much like laughing spontaneously. Other research has demonstrated that throat mucus antibodies increased after a 20-minute laughter session and that Natural Killer Cells (those that fight cancer, for example) become more potent after laughing.
Positive psychological effects include: an increase in concentration, sociability, cooperation, creativity and self-confidence, plus better ability to cope with stress. For these reasons Laughter Clubs are also run within factories, companies and public utilities in India and other parts of the world. Clubs are free and open to all. In India they meet daily; in the West they tend to be less frequent and may meet weekly or monthly.
As this technique was developed by a medic who practised yoga as well as medicine, the contraindications of laughing have also been considered. Mostly they are based on common sense but include: unstable angina, severe external haemorrhoids, pregnancy and patients recovering from recent abdominal surgery, amongst others. From this it might appear that laughing can help you to stay healthy and more positive but may not help when you are already ill. The current laughter session structure only needed slight adjustments to make it available to the disabled and more chronically sick and I visited Bombay in December 2003 to develop this idea with Dr Kataria.
After training as a Leader in September 2002, I started the Laughter Club in Poggibonsi, Italy in January 2003. That summer I gave a talk in Milton Keynes to nine people with MS, explaining the benefits of laughter and what we do in a session. When we tried some laughs I noticed that after each one they would discreetly prop themselves up against a table or chair while I explained the next. Nobody said anything, but I was aware that, even though they could walk, their mobility and energy levels would never permit them to participate in a full club session, which can be quite energetic. Had they been in wheelchairs the situation would have been more difficult. We did five different laughs together, which everyone thoroughly enjoyed, and wanted to experience again. The problem was that they lacked a leader to coordinate and activate their sessions.
This experience started me thinking about how these people, who generally suffer pain and depression as part of their condition, in addition to various other symptoms, could be missing out on a very valid and free method of relieving depression and pain – and that there are many more like them, and suffering from other disabling conditions, who would find it impossible to physically participate in the existing club format.
Thanks to a Lottery Commission Millennium Award grant via the Multiple Schlerosis Society, I studied with Dr Kataria to become a Leader Trainer, operating within ethical guidelines to train leaders who could set up clubs for people with Multiple Schlerosis and other disabilities. Two free workshops were held in the UK in March 2004 and sixteen volunteer leaders were trained, six of whom were living with MS. They have returned to their various communities and started using this modified technique.
Feedback has been very positive. One group of 25 at Reading, of which 18 were in wheelchairs. Two yoga teachers from Bedford who have started incorporating Laughter Yoga into their residential courses with ME sufferers and others. Milton Keynes are finally starting their own club at the MS Therapy Centre – just nine months after that first talk! And what of the trainer? I have been asked to address the AGM of the Devon and Cornwall Region of the MS Society in September, which is apparently causing great excitement! The MS International Federation, which has member MS Societies in 42 countries has offered me space on their website to inform their members about this new possibility and I have been approached by a commercial group about giving after dinner addresses and demonstrations of laughing sessions at conference facilities in the UK. All in all, quite a lot to laugh about!
The initial funding came via the UK MS Society but in the future it is hoped to extend these clubs to people living with cancer or HIV and AIDS, to workers in stressful jobs or situations (including NHS and public sector workers), and any group in society which would like to experience the FREE benefits of laughing together for no reason. Clubs are free, with only a contribution towards the rent of a room, if necessary. It is hoped that some commercial sponsorship might help train leaders and set up some clubs in Eastern Europe, where disabled people do not enjoy the benefits system currently available in the more prosperous nations of the EEC and therefore endure financial hardship as well as their physical difficulties. This technique is truly international, because you can laugh in any language. Enquiries from other countries who would like to have some trained leaders would be very welcome.
Toni Cook is available for conference addresses, after-dinner speaking, information evenings, training events or two-day Laughter Club Leader training workshops (whether for standard club format or clubs for people living with disabling illnesses.) She is a certificated Spiritual Healer/Counsellor, an Australian Bush Flower Remedy therapist, studied “Teaching Happiness” with Dr Robert Holden, is a qualified TESOL English teacher, a trained Laughter Club Leader and Laughter Club Leader trainer. Her workshops have been described as “inspirational”, “fun”, “practical and informative”. Anyone who is interested in knowing more can contact Toni Cook via email at: Toni Cook or by phone/fax on 0039 0577 741206 (Italy). (More details of the Laughter Club International are on their website at Laughter Yoga
Toni is in the UK until August 25th. My suggestion, if possible, is for either (or both) the Dystonia Societies to invite Toni to make a presentation/run a workshop so they can see for themselves just how significant 'laughter' can be - after all, those with dystonia as much as anyone else with such a debilitating ailment need anything they can have to help don't they?
I hope visitors to this site read the article above and contact Toni.
I have bought the DVD and when it arrives from here I will be reviewing it as a product of use to those with dystonia - but the DVD is not aimed specifically at those with a disability...whereas Toni's workshops are.
[July 31, 2004 04:58]
Hats off to Lisa!
A few days ago someone called Lisa posted in the Guest Book at TDS. No-one from TDS replied but David from this site did. A correspondence ensued and now Lisa is actively helping raise funds for those with dystonia!
In such a short time she has:
a. written and sent in a contribution for the dystonia book
b. Sent in a draft of a sponsor form that she's using to raise funds in conjunction with a dog club
c. Got the local paper to look at jobs and so she can get in touch with them and maybe write an article about the sponsored dog walk.
d. offered to send out letters on behalf of this site to local businesses etc asking about sponsorship
All excellent stuff and reading between the lines of her emails she's pretty excited about it all too!
The TDS have now removed their Guest Book and all the posts there for no apparent reason - certainly no reason ahs been posted so those who referred back to the posts for information etc are a bit stuck.
Luckily....
If you go HERE you can see the old posts and if you look at the very last post then that may well be the reason the Guest Book was closed down.
Awkward questions indeed!
An added web presence (to be developed) is here
In such a short time she has:
a. written and sent in a contribution for the dystonia book
b. Sent in a draft of a sponsor form that she's using to raise funds in conjunction with a dog club
c. Got the local paper to look at jobs and so she can get in touch with them and maybe write an article about the sponsored dog walk.
d. offered to send out letters on behalf of this site to local businesses etc asking about sponsorship
All excellent stuff and reading between the lines of her emails she's pretty excited about it all too!
The TDS have now removed their Guest Book and all the posts there for no apparent reason - certainly no reason ahs been posted so those who referred back to the posts for information etc are a bit stuck.
Luckily....
If you go HERE you can see the old posts and if you look at the very last post then that may well be the reason the Guest Book was closed down.
Awkward questions indeed!
An added web presence (to be developed) is here
[July 30, 2004 11:23]
A Dystonia cafe in Oxford?
Today i visited the Ark-T centre in Oxford
I have now written to the Revd. James Grote with the following - very tentative - idea:
Renting the Cafe from the Centre on Saturdays only.
The cafe would then be run all day with the money raised as follows:
a. a % to the centre
b. a % to be of specific help to those with dystonia as detailed on www.dystonia-support4u.co.uk
Naturally all food would be provided by me. There would be no alcohol and any regulations already there would be complied with.
BUT the cafe (on Saturday) would not just be about selling food, raising revenue. I would also use this weekly opportunity to raise awareness about Dystonia. Thus there would be leaflets available, possibly books (free) to take away and all menus would have details on them about dystonia.
Thus awareness would be raised.
PLUS all those actually with dystonia would be able to come and have totally free food. This would encourage those with dystonia to make the trip AND the cafe would double as an unofficial meeting place for those with dystonia at no cost to them. Obviously those without dystonia i.e. their carers etc plus members of the general public would have to pay for what they consumed.
Thus the cafe would:
a. raise funds for Ark projects and this site etc
b. raise awareness of dystonia
c. raise awareness of the cafe as I HOPE this would attract favourable publicity
d. be of direct help and interest to those with dystonia
Our relationship with the Ark-T Centre would simply be as a Saturday tenant and we would of course leave the cafe as we found it and contribute towards any insurance necessary etc.
This presents an opportunity for greater use of fixed resources, greater awareness of dystonia, an injection of funds to Ark without having the labour etc and a knock-on benefit in terms of publicity and general awareness.
This is only a very tentative idea and welcome comments from anyone...
I have now written to the Revd. James Grote with the following - very tentative - idea:
Renting the Cafe from the Centre on Saturdays only.
The cafe would then be run all day with the money raised as follows:
a. a % to the centre
b. a % to be of specific help to those with dystonia as detailed on www.dystonia-support4u.co.uk
Naturally all food would be provided by me. There would be no alcohol and any regulations already there would be complied with.
BUT the cafe (on Saturday) would not just be about selling food, raising revenue. I would also use this weekly opportunity to raise awareness about Dystonia. Thus there would be leaflets available, possibly books (free) to take away and all menus would have details on them about dystonia.
Thus awareness would be raised.
PLUS all those actually with dystonia would be able to come and have totally free food. This would encourage those with dystonia to make the trip AND the cafe would double as an unofficial meeting place for those with dystonia at no cost to them. Obviously those without dystonia i.e. their carers etc plus members of the general public would have to pay for what they consumed.
Thus the cafe would:
a. raise funds for Ark projects and this site etc
b. raise awareness of dystonia
c. raise awareness of the cafe as I HOPE this would attract favourable publicity
d. be of direct help and interest to those with dystonia
Our relationship with the Ark-T Centre would simply be as a Saturday tenant and we would of course leave the cafe as we found it and contribute towards any insurance necessary etc.
This presents an opportunity for greater use of fixed resources, greater awareness of dystonia, an injection of funds to Ark without having the labour etc and a knock-on benefit in terms of publicity and general awareness.
This is only a very tentative idea and welcome comments from anyone...
[July 29, 2004 21:29]
Free Book!
If anyone in the UK would like a copy of this book then please contact me as soon as possible.
chris@osl-ltd.co.uk
I have also had a long chat with John Heney and there's a 'possibility' that I'll be able to offer a copy of this:
“The Thunder Within” is John’s autobiographical description of his journey through the debilitating effects of what happened when his legacy of cerebral palsy suddenly collapsed to include the neurological and movement challenges of dystonia, ataxia and aphasia. ISBN: 1-894263-56-1
However details have not been finalised yet.
I have also been busy emailing Julie Sheldon, author of 'Dancer Off her Feet':
with a view to providing free copies but no reply has been received.
I'll keep at it though!
chris@osl-ltd.co.uk
I have also had a long chat with John Heney and there's a 'possibility' that I'll be able to offer a copy of this:
“The Thunder Within” is John’s autobiographical description of his journey through the debilitating effects of what happened when his legacy of cerebral palsy suddenly collapsed to include the neurological and movement challenges of dystonia, ataxia and aphasia. ISBN: 1-894263-56-1
However details have not been finalised yet.
I have also been busy emailing Julie Sheldon, author of 'Dancer Off her Feet':
with a view to providing free copies but no reply has been received.I'll keep at it though!
[July 29, 2004 06:37]
July 29th News
More things in motion.
Firstly, this site and our activities has been entered for the Startups Awards (Community Impact) 2004
Please visit their site.
We have been in contact with Alive Magazine offering an article. They're considering it....
The Schools Competition has been broadened to incldue teachers too and this has been publicised on the TES Messageboard
If nothing else it will raise awareness.
Also, we are working with the National Spasmodic Toticollis Association with an aim to providing FREE copies of a handbook about torticollis to all who want one.
We are also working with ST Dystonia Inc to show their videos on this site. Much the same too with Donna from Tardive Dystonia and her video
These things take time and I know things are moving too slowly but we will get there in the end.
Posters and book are temporarily on hold as there are problems over the domain name for this site i.e. it still hasn't been transferred and the owner has disappeared.
Janet Murray, a freelance journalist recently interviewed me for an article for the Times Educational Supplement and pictures were taken by Geraint Lewis for the newspaper.
Apparently an article about this site has also appeared in Good Housekeeping magazine but I have not seen a copy.
Videotapes have been distributed to the London Branch of the Dystonia Society (free)so hopefully their members will gain.
ADDER passed an enquiry on to us concerning someone who MAY HAVE dystonia and we are working with her to gain a quick diagnosis.
Other organisations - the Dystonia Society being the only exception - continue to praise us. The DMRF wrote to us and said: "...your website looks fabulous. Very empowering and motivating".
ADDER wrote and said "I think your website is brilliant".
The National Spasmodic Torticollis Association wrote and said: "Your project sounds an absolutely wonderful one. Bravo! We wish you much success in your important endeavour".
Someone else was referred to us by ADDER concerning diagnosis of dystonia. We help as much as we can as telephone support is available on an ad hoc basis 15 hours a day, 105 hours a week.
So, in the main, people like what we're doing which will all help us to help those who most need it....and remember, no salaried staff, no membership fees and expenses are mainly absorbed.
Firstly, this site and our activities has been entered for the Startups Awards (Community Impact) 2004
Please visit their site.
We have been in contact with Alive Magazine offering an article. They're considering it....
The Schools Competition has been broadened to incldue teachers too and this has been publicised on the TES Messageboard
If nothing else it will raise awareness.
Also, we are working with the National Spasmodic Toticollis Association with an aim to providing FREE copies of a handbook about torticollis to all who want one.
We are also working with ST Dystonia Inc to show their videos on this site. Much the same too with Donna from Tardive Dystonia and her video
These things take time and I know things are moving too slowly but we will get there in the end.
Posters and book are temporarily on hold as there are problems over the domain name for this site i.e. it still hasn't been transferred and the owner has disappeared.
Janet Murray, a freelance journalist recently interviewed me for an article for the Times Educational Supplement and pictures were taken by Geraint Lewis for the newspaper.
Apparently an article about this site has also appeared in Good Housekeeping magazine but I have not seen a copy.
Videotapes have been distributed to the London Branch of the Dystonia Society (free)so hopefully their members will gain.
ADDER passed an enquiry on to us concerning someone who MAY HAVE dystonia and we are working with her to gain a quick diagnosis.
Other organisations - the Dystonia Society being the only exception - continue to praise us. The DMRF wrote to us and said: "...your website looks fabulous. Very empowering and motivating".
ADDER wrote and said "I think your website is brilliant".
The National Spasmodic Torticollis Association wrote and said: "Your project sounds an absolutely wonderful one. Bravo! We wish you much success in your important endeavour".
Someone else was referred to us by ADDER concerning diagnosis of dystonia. We help as much as we can as telephone support is available on an ad hoc basis 15 hours a day, 105 hours a week.
So, in the main, people like what we're doing which will all help us to help those who most need it....and remember, no salaried staff, no membership fees and expenses are mainly absorbed.
[July 21, 2004 16:37]
A True Story About the Healing of Dystonia
Hi all
I have just spent the last hour on the telephone to John, author of 'A True Story About the Healing of Dystonia'. I had many many questions.
I have put various proposals to John and we'll have to see what happens.
Meanwhile I have emailed him with a link to this site and this post and I hope he will post here and elsewhere.
To anyone reading this I strongly urge you at least visit his website and maybe make contact with him - I think you'll find it all very interesting.
John's site:
http://johnheney.com/passion.htm
Well worth a visit!
I have just spent the last hour on the telephone to John, author of 'A True Story About the Healing of Dystonia'. I had many many questions.
I have put various proposals to John and we'll have to see what happens.
Meanwhile I have emailed him with a link to this site and this post and I hope he will post here and elsewhere.
To anyone reading this I strongly urge you at least visit his website and maybe make contact with him - I think you'll find it all very interesting.
John's site:
http://johnheney.com/passion.htm
Well worth a visit!
[July 2, 2004 08:21]
Developments
[June 30, 2004 19:03]
Some Positive News
I wrote to various companies who produce DVDs, books and exercise bands etc. Two have now written back and are offering free (and more at a discount) DVDs and yoga stuff and a book so I unhesitatingly would like to plug this site. Not only is the site excellent but a couple of years ago I bought the book and that too is excellent.
I'd also like to plug Easy Desktop Yoga as having seen the free video the DVD looks excellent.
Both the producers have offered to help me with this site - so thanks!
There are more changes and more good news on the way but until the 'deal is done' I'll say no more....
I'd also like to plug Easy Desktop Yoga as having seen the free video the DVD looks excellent.
Both the producers have offered to help me with this site - so thanks!
There are more changes and more good news on the way but until the 'deal is done' I'll say no more....
[June 27, 2004 08:16]
Soaking Prayer
Soaking Prayer is:
"It is exactly what individual persons really want. It is private personal attention in their realistic
urgencies. The cries of humanity since the beginning of time are the shouts and the tears of
the desperately ill.
To them, in moments of despair, there seems to be no rainbow beyond an apparent Lost Horizon.
Though heaven is beautiful and realistic, yet there remains the fact that nobody really wants to die.
If this were not true, then we should close all our hospitals, and religious and secular agencies.
God wants us well and prosperous. He does not want us in destitution, nor does he send sicknesses to us. We are the victims of original evil and we suffer its consequences, accompanied by its wounds. Some chosen souls may be in a distinctive close union with God; and they may accept their sufferings and unite it with the suffering passion of Christ. These persons thereupon
use them for what we call Redemptive Suffering. But these special selected saints are not always the general ways of each person.
THE ESSENCE OF SOAKING PRAYER:
It is extended time in prayer with someone who is in need. You can do it alone; or it can be performed with group ministerial personages.
Prayer is the tool. Prayer is a powerhouse! Prayer ushers a praying person from discipline
into endurance, and concludes itself into the factuality of a divine blessing.
Essentially, soaking prayer is simply the practical administration of continued, incessant, persistent
and unbroken moments of prayer. It is accomplished simply through concerned persons who really care for the needs of others.
Sometimes it is conveyed by selected holy persons either as individual or with group leaders.
This praying behavior flows from hearts of persons with true love and compassion in their hearts
and spirits. They see the suffering of a human being, and they just care"
Source: Rev. Father Ralph A. DiOrio
I have been in contact with someone whose sister has dystonia.
He has produced a CD and booklet on "Healing Soaking Prayer": The Essence of Soaking Prayer (CD)
The Practice of Soaking Prayer (Booklet.
I am THINKING of including it in the Goodies Bag BUT I am aware that many people who have dystonia may well not be Christian.
So - ideas?
"It is exactly what individual persons really want. It is private personal attention in their realistic
urgencies. The cries of humanity since the beginning of time are the shouts and the tears of
the desperately ill.
To them, in moments of despair, there seems to be no rainbow beyond an apparent Lost Horizon.
Though heaven is beautiful and realistic, yet there remains the fact that nobody really wants to die.
If this were not true, then we should close all our hospitals, and religious and secular agencies.
God wants us well and prosperous. He does not want us in destitution, nor does he send sicknesses to us. We are the victims of original evil and we suffer its consequences, accompanied by its wounds. Some chosen souls may be in a distinctive close union with God; and they may accept their sufferings and unite it with the suffering passion of Christ. These persons thereupon
use them for what we call Redemptive Suffering. But these special selected saints are not always the general ways of each person.
THE ESSENCE OF SOAKING PRAYER:
It is extended time in prayer with someone who is in need. You can do it alone; or it can be performed with group ministerial personages.
Prayer is the tool. Prayer is a powerhouse! Prayer ushers a praying person from discipline
into endurance, and concludes itself into the factuality of a divine blessing.
Essentially, soaking prayer is simply the practical administration of continued, incessant, persistent
and unbroken moments of prayer. It is accomplished simply through concerned persons who really care for the needs of others.
Sometimes it is conveyed by selected holy persons either as individual or with group leaders.
This praying behavior flows from hearts of persons with true love and compassion in their hearts
and spirits. They see the suffering of a human being, and they just care"
Source: Rev. Father Ralph A. DiOrio
I have been in contact with someone whose sister has dystonia.
He has produced a CD and booklet on "Healing Soaking Prayer": The Essence of Soaking Prayer (CD)
The Practice of Soaking Prayer (Booklet.
I am THINKING of including it in the Goodies Bag BUT I am aware that many people who have dystonia may well not be Christian.
So - ideas?
[June 27, 2004 06:35]
What about this?
Do you think this would make a useful addition to the Goodie Box: here as it seems there is a lot of useful information....
[June 25, 2004 21:59]
Allergies
I have been looking through some old correspondence about allergies and dystonia. I came across a letter from the Airedale Allergy clinic and also some correspondence from Cherry Howard who at the time was Chairperson of the Solent Support Group.
In 1995 Cherry wrote to me about her dystonia and the Airedale Allergy Centre.
here is an extract:
"I was the first dystonia patient at the Airedale Allergy Centre.....Another girl, Pam, came in with very bad torticollis and she went out 'extremely well' after 21 days of treatment and has remained well ever since......Please consider that for some people with similar symptoms the underlying cause might be allergy - and it can be treated...."
Cherry Howard
Solent Support Group Chair 1995
That was nearly 10 years ago.
Tonigth I have written to the Airedale Allergy Centre, asking if they have made any further progress etc.
of course there is nothing stopping visitors here from making their own enquiries. In the pamphlet distributed by The Dystonia Society for patients, professor Marsden writes in the paragraph 'Can Dystonia Get Better?':
"Dystonia may be due to a chemical imbalance in the brain. It is thought to be due to some chemical imbalance of the neurotransmitters in the basal ganglia"
Now consider:
a. foods are made of chemicals
b. they may produce checmical reactions in the brain
Four weeks ago I posted this extract:
" In Tillman's case, a combination of intolerances to certain foods (including coconuts, cashews and grapefruit) and chemicals (such as formaldehyde) was found to be the reason behind his dystonia"
Source: The Guardian
Is this something people should be investigating?
In 1995 Cherry wrote to me about her dystonia and the Airedale Allergy Centre.
here is an extract:
"I was the first dystonia patient at the Airedale Allergy Centre.....Another girl, Pam, came in with very bad torticollis and she went out 'extremely well' after 21 days of treatment and has remained well ever since......Please consider that for some people with similar symptoms the underlying cause might be allergy - and it can be treated...."
Cherry Howard
Solent Support Group Chair 1995
That was nearly 10 years ago.
Tonigth I have written to the Airedale Allergy Centre, asking if they have made any further progress etc.
of course there is nothing stopping visitors here from making their own enquiries. In the pamphlet distributed by The Dystonia Society for patients, professor Marsden writes in the paragraph 'Can Dystonia Get Better?':
"Dystonia may be due to a chemical imbalance in the brain. It is thought to be due to some chemical imbalance of the neurotransmitters in the basal ganglia"
Now consider:
a. foods are made of chemicals
b. they may produce checmical reactions in the brain
Four weeks ago I posted this extract:
" In Tillman's case, a combination of intolerances to certain foods (including coconuts, cashews and grapefruit) and chemicals (such as formaldehyde) was found to be the reason behind his dystonia"
Source: The Guardian
Is this something people should be investigating?
[June 24, 2004 18:57]
Progress!
I have been in contact with the very friendly NSTA.
They wrote to me and said:
" If you're giving them away, I'll sell you as many as you can use for $20.00, and if we can really send 5 for just 5.00, I'll eat the postage too. And to save you the hassle of sending a check we can cash at a US bank, how about if I go one better and give you a complimentary membership to NSTA. "
So - the offer is there.
If YOU (in the UK) want a copy of the NSTA video to help those with torticollis then email me!!!!
PROGRESS!!!
chris@osl-ltd.co.uk
They wrote to me and said:
" If you're giving them away, I'll sell you as many as you can use for $20.00, and if we can really send 5 for just 5.00, I'll eat the postage too. And to save you the hassle of sending a check we can cash at a US bank, how about if I go one better and give you a complimentary membership to NSTA. "
So - the offer is there.
If YOU (in the UK) want a copy of the NSTA video to help those with torticollis then email me!!!!
PROGRESS!!!
chris@osl-ltd.co.uk
[June 24, 2004 07:06]
What to do with the money
I finished my last conference at a school yesterday, raising another £150 to help those who have dystonia.
As there has been absolutely no response regarding giving the money to Members of the Dystonia Society EXCEPT for a very few orders for books (I'd hoped about 5,000 would be required, not just FIVE) I have made the following preliminary decisions and would very much welcome your comments.
1. Further develop this website. Agreement has already been reached for a 'Conversations with God' type display. I have written the script and Reata Strickland of the University of Alabama has agreed to produce the slides. I have also been granted copyright release for some text that I have adapted to deal with 'dystonia and God' type conversations. I am very positive about the likely outcome.
2. Produce the 'online book' to go to 1000 neurologists. This is to be accompanied by a leaflet from ADDER. They responded within 48 hours to my request. The Dystonia Society took months so I can't be bothered with that.
3. Rather than produce a separate CD - as I ran into difficulties over that - to simply offer the NSTA one to anyone who wants it.
4. Following posts elsewhere and here too, to provide a range of products for those who have dystonia. Naturally these will be provided free. I am in contact with about 20 companies about the possibility of them providing such products free or at a discount (which of course I would pay) to enable those with dystonia to have (free) exercise bands, DVDs, books etc. The NSTA have produced a booklet about Spasmodic Torticollis and exercises (plus video) which will be reviewed elsewhere on the site. The booklet shows various exercises using a theraband and I am negotiating with companies to provide these free of charge. Therefore those with dystonia would be able to order exercise equipment/DVDs/books etc through this site - and wouldn't pay anything i.e. I'd pick up the bill. This would also apply to products that have been trialled. I am disappointed with the whole Chi Machine experience. I was criticised for my honest reviews and also, having returned the machine despite assurances I have still not been told that it has reached its destination and neither have I received a refund for postage.
5. The Essay Competition for schools didn't work. Despite mailing 5000 schools twice no-one entered. Still, I suppose some awareness has been raised.
6. A video will be put on this site explaining dystonia - but there have been production difficulties into actually getting the film onto the site. I thought someone was able to do it and after 4 weeks they said they couldn't. Snail's progress I am afraid!
7. I have also heard very good things about The Spasmodic Torticollis Handbook: A Guide to Treatment and Rehabilitation I have contacted NSTA and aked them what price they'd charge if I ordered copies in order to give them away free to people in the UK with dystonia. As I said in my email to them the aim of this site is to work with other organisations, not to duplicate services but to complement them. This, again, is why feedback from visitors here, who have dystonia and find certain products is so helpful. This is what Vera wrote about the video and the book:
"I have the video and book. The book is very informative, there are all the relevant sketches of different types of ST and the muscles involved. It is entitled The Spasmodic Torticollis Handbook - A guide to treatment and rehabilitation. It does all of this and I would recommend it for anyone who has ST. In the back of the book are sketches and a description of exercises that can help, but I also think it is important that these exercises are done perfectly correct. Reading the instructions just from a book, you may just get it slightly wrong. The accompanying tape is excellent in my opinion. The exercises are very easy to do. Mayank Pathak, MD explains beforehand, the importance of stretching and relaxing the overactive agonist muscles that are in spasm. Then strengthen the antagonist muscles that can oppose the torticollis and bring the head position back to neutral.
I have to admit I do not do these exercises every day, but they are very easy and simple to do and you can do them just about anywhere.
I do about 4 or 5 of each exercise and my neck always feels more balanced and straighter. The stretching exercise where you sit on a chair and grip the side of it, I find I can get the same effect when my neck is pulling and I am out somewhere, by holding my hands behind my back and grabbing my left wrist (I rotate to the left) and pulling my shoulders down hard, then turning my neck to the right then point my chin down. This gives it the same good stretch. The strengthening exercise of pushing your head into a pillow or even your hand is another great exercise for stengthening the antagonist muscles and I know it is used by PT's for people with 'whiplash' injuries.
Overall, I truly recommend both products and should be used together. The user also has peace of mind that the exercises have been designed specifically for people with ST and not just another neck exercise.!"
Maybe I should just buy one copy for every branch and then give it away....
More updates to follow....your support and communication is very important. I am trying to provide a structure - and finance - whereby we can help each other but i cannot do it (nor would I want to) by myself.
As there has been absolutely no response regarding giving the money to Members of the Dystonia Society EXCEPT for a very few orders for books (I'd hoped about 5,000 would be required, not just FIVE) I have made the following preliminary decisions and would very much welcome your comments.
1. Further develop this website. Agreement has already been reached for a 'Conversations with God' type display. I have written the script and Reata Strickland of the University of Alabama has agreed to produce the slides. I have also been granted copyright release for some text that I have adapted to deal with 'dystonia and God' type conversations. I am very positive about the likely outcome.
2. Produce the 'online book' to go to 1000 neurologists. This is to be accompanied by a leaflet from ADDER. They responded within 48 hours to my request. The Dystonia Society took months so I can't be bothered with that.
3. Rather than produce a separate CD - as I ran into difficulties over that - to simply offer the NSTA one to anyone who wants it.
4. Following posts elsewhere and here too, to provide a range of products for those who have dystonia. Naturally these will be provided free. I am in contact with about 20 companies about the possibility of them providing such products free or at a discount (which of course I would pay) to enable those with dystonia to have (free) exercise bands, DVDs, books etc. The NSTA have produced a booklet about Spasmodic Torticollis and exercises (plus video) which will be reviewed elsewhere on the site. The booklet shows various exercises using a theraband and I am negotiating with companies to provide these free of charge. Therefore those with dystonia would be able to order exercise equipment/DVDs/books etc through this site - and wouldn't pay anything i.e. I'd pick up the bill. This would also apply to products that have been trialled. I am disappointed with the whole Chi Machine experience. I was criticised for my honest reviews and also, having returned the machine despite assurances I have still not been told that it has reached its destination and neither have I received a refund for postage.
5. The Essay Competition for schools didn't work. Despite mailing 5000 schools twice no-one entered. Still, I suppose some awareness has been raised.
6. A video will be put on this site explaining dystonia - but there have been production difficulties into actually getting the film onto the site. I thought someone was able to do it and after 4 weeks they said they couldn't. Snail's progress I am afraid!
7. I have also heard very good things about The Spasmodic Torticollis Handbook: A Guide to Treatment and Rehabilitation I have contacted NSTA and aked them what price they'd charge if I ordered copies in order to give them away free to people in the UK with dystonia. As I said in my email to them the aim of this site is to work with other organisations, not to duplicate services but to complement them. This, again, is why feedback from visitors here, who have dystonia and find certain products is so helpful. This is what Vera wrote about the video and the book:
"I have the video and book. The book is very informative, there are all the relevant sketches of different types of ST and the muscles involved. It is entitled The Spasmodic Torticollis Handbook - A guide to treatment and rehabilitation. It does all of this and I would recommend it for anyone who has ST. In the back of the book are sketches and a description of exercises that can help, but I also think it is important that these exercises are done perfectly correct. Reading the instructions just from a book, you may just get it slightly wrong. The accompanying tape is excellent in my opinion. The exercises are very easy to do. Mayank Pathak, MD explains beforehand, the importance of stretching and relaxing the overactive agonist muscles that are in spasm. Then strengthen the antagonist muscles that can oppose the torticollis and bring the head position back to neutral.
I have to admit I do not do these exercises every day, but they are very easy and simple to do and you can do them just about anywhere.
I do about 4 or 5 of each exercise and my neck always feels more balanced and straighter. The stretching exercise where you sit on a chair and grip the side of it, I find I can get the same effect when my neck is pulling and I am out somewhere, by holding my hands behind my back and grabbing my left wrist (I rotate to the left) and pulling my shoulders down hard, then turning my neck to the right then point my chin down. This gives it the same good stretch. The strengthening exercise of pushing your head into a pillow or even your hand is another great exercise for stengthening the antagonist muscles and I know it is used by PT's for people with 'whiplash' injuries.
Overall, I truly recommend both products and should be used together. The user also has peace of mind that the exercises have been designed specifically for people with ST and not just another neck exercise.!"
Maybe I should just buy one copy for every branch and then give it away....
More updates to follow....your support and communication is very important. I am trying to provide a structure - and finance - whereby we can help each other but i cannot do it (nor would I want to) by myself.
[June 14, 2004 04:05]
More money raised plus other developments
Following a joint project by myself and Duncan Williamson £330 has been raised to help pay for this site and to make available to those who have dystonia.
Four months ago we wrote two analyses of a Case Study for A level Business Studies. This was followed up by a workbook. Over 90 copies were sold - further details are at Duncan's site
In a separate development I have had an article about football and management published. As part of the article I mention sponsorship and one of the characters suggests sponsorship to raise funds for dystonia. This enabled me to introduce dystonia and its definition into the story.
The article will be read by 5000+ people thus raising awareness further plus it is being entered for a Management Article competition so will be read by even more people.
All sales revnue from the sale of these books will also go towards this site. Every page of the book features a plus for this site which, again, helps to raise awareness of dystonia.
Following telephone calls to The University of Alabama, Reata Strickland has agreed to produce some slides that deal with dystonia. Her previous ventures include the world famous 'Conversations with God' that has been seen by millions of people. When finished, this is likely to raise awareness even further.
In terms of the re-design of this site agreement has almost been concluded so that forthcoming changes include:
a. a chat room
b. a better and more easily navigated Forum
c. a video showing dystonia. This will be downloadable.
d. a change of colour scheme
The reason for the colour scheme is to match the site to posters and the Dystonia Book cover. Both of these last two will be produced over the next week or so and then sent out to neurologists etc. Currently we are considering 5 different designs for the posters.
Following discussions with the main Fundraiser for SSAFA investigations will be made into various other ways that funds may be raised eg through the creation of a key-ring with coin (useful for supermarket trolleys, gym lockers etc). The logo developed (for free - thanks) by Scotch Pie Design may appear on mugs that can be sent to sponsors.
Remember all the above is without being a charity. Each and every donation is clearly tracked and full details are shown here I did try and give the money to Members of The Dystonia Society but even though I wrote to every single Branch not one said they wanted the money so I won't try again. You can see from the letters shown here where previous donations have gone - but that was when I gave the money directly to the Branch.
The purposes of this site are to raise awareness (this is being done through conferences at schools and frequent mailshots plus the selling of the case study analysis); raise finance (£5000+ has been raised so far) and to make the money available to further these aims and to directly help those with dystonia. Nothing is ever charged for administration though some money (not much) goes to web designers. Certainly nothing will ever be spent on a marketing agency as has been done by The Dystonia Society This does not mean professionals will not be used - merely that their time will be donated free of charge. Often the only tangible 'reward' is to appear in the Sponsors section.
None of the above would have been possible without the help and support of the visitors to this site and the behind the scenes help from others.
Thank you.
This site is for everyone to help raise awareness and to provide a book for those unfortunate to not have access to the internet. I am trying to make this a global community for everyone with dystonia - with or without PC access!
Four months ago we wrote two analyses of a Case Study for A level Business Studies. This was followed up by a workbook. Over 90 copies were sold - further details are at Duncan's site
In a separate development I have had an article about football and management published. As part of the article I mention sponsorship and one of the characters suggests sponsorship to raise funds for dystonia. This enabled me to introduce dystonia and its definition into the story.
The article will be read by 5000+ people thus raising awareness further plus it is being entered for a Management Article competition so will be read by even more people.
All sales revnue from the sale of these books will also go towards this site. Every page of the book features a plus for this site which, again, helps to raise awareness of dystonia.
Following telephone calls to The University of Alabama, Reata Strickland has agreed to produce some slides that deal with dystonia. Her previous ventures include the world famous 'Conversations with God' that has been seen by millions of people. When finished, this is likely to raise awareness even further.
In terms of the re-design of this site agreement has almost been concluded so that forthcoming changes include:
a. a chat room
b. a better and more easily navigated Forum
c. a video showing dystonia. This will be downloadable.
d. a change of colour scheme
The reason for the colour scheme is to match the site to posters and the Dystonia Book cover. Both of these last two will be produced over the next week or so and then sent out to neurologists etc. Currently we are considering 5 different designs for the posters.
Following discussions with the main Fundraiser for SSAFA investigations will be made into various other ways that funds may be raised eg through the creation of a key-ring with coin (useful for supermarket trolleys, gym lockers etc). The logo developed (for free - thanks) by Scotch Pie Design may appear on mugs that can be sent to sponsors.
Remember all the above is without being a charity. Each and every donation is clearly tracked and full details are shown here I did try and give the money to Members of The Dystonia Society but even though I wrote to every single Branch not one said they wanted the money so I won't try again. You can see from the letters shown here where previous donations have gone - but that was when I gave the money directly to the Branch.
The purposes of this site are to raise awareness (this is being done through conferences at schools and frequent mailshots plus the selling of the case study analysis); raise finance (£5000+ has been raised so far) and to make the money available to further these aims and to directly help those with dystonia. Nothing is ever charged for administration though some money (not much) goes to web designers. Certainly nothing will ever be spent on a marketing agency as has been done by The Dystonia Society This does not mean professionals will not be used - merely that their time will be donated free of charge. Often the only tangible 'reward' is to appear in the Sponsors section.
None of the above would have been possible without the help and support of the visitors to this site and the behind the scenes help from others.
Thank you.
This site is for everyone to help raise awareness and to provide a book for those unfortunate to not have access to the internet. I am trying to make this a global community for everyone with dystonia - with or without PC access!
[May 18, 2004 15:11]
..and more...
This site has now been awarded a further award of £1,000 from The Co-op
PLUS an anonymous £100 has been donated by a very generous person...who I bumped into in the queue at Barclays Bank and told the person about this site!
You see - it helps to spread awareness.
Talking of which I conducted some market ersearch aboutt he elaflets and posters by asking several schools to comment. I have made the comments available to TDS - they only have to ask.
In addition I have obtained a quotation from printers in case TDS wish to reprint the posters - again I have emailed them and said the quotation is available.
PLUS an anonymous £100 has been donated by a very generous person...who I bumped into in the queue at Barclays Bank and told the person about this site!
You see - it helps to spread awareness.
Talking of which I conducted some market ersearch aboutt he elaflets and posters by asking several schools to comment. I have made the comments available to TDS - they only have to ask.
In addition I have obtained a quotation from printers in case TDS wish to reprint the posters - again I have emailed them and said the quotation is available.
[May 18, 2004 14:19]
More good news
I have stressed throughout this site that the aim is to co-operate and help and work with other groups. In the main other organisations have been extremely supportive - the NSTA and others.
Thank you everyone.
I am pleased to announce that I have just finished speaking with reata Strickland of the University of Alabama and she is willing to create a 'dystonia-biased' set of slides along the lines of the beautiful (and world famous) set shown here
This has the potential to be really something which will greatly add to the work already done with other dystonia organisations - and non-dystonia organisations such as Scotch Pie who have now designed and sent me a logo that can be used for the book and posters.
Talking of posters I now have five designs sent in that can be used to create posters for distribution to neurologists and schools.
This is all to the good...
Thank you everyone.
I am pleased to announce that I have just finished speaking with reata Strickland of the University of Alabama and she is willing to create a 'dystonia-biased' set of slides along the lines of the beautiful (and world famous) set shown here
This has the potential to be really something which will greatly add to the work already done with other dystonia organisations - and non-dystonia organisations such as Scotch Pie who have now designed and sent me a logo that can be used for the book and posters.
Talking of posters I now have five designs sent in that can be used to create posters for distribution to neurologists and schools.
This is all to the good...
[May 12, 2004 22:03]
Emails
TDS have decided not to use the account I have set up.
[May 12, 2004 12:39]
Dystonia Society and emails
In the past few days I have received emails from Eileen Gascoigne and Frank Gormley from the TDS. In both cases they say there have been problems with receiving emails and this is the main reason why my emails have not been responded to.
To help the TDS I have therefore set up a Yahoo account:
dystoniatds@yahoo.co.uk
I have faxed TDS and sent them the password.
Now there should be no more problems with unanswered emails.
To help the TDS I have therefore set up a Yahoo account:
dystoniatds@yahoo.co.uk
I have faxed TDS and sent them the password.
Now there should be no more problems with unanswered emails.
[May 12, 2004 11:48]
Awareness
As part of Awareness 800+ neurologists will shortly be receiving the Dystonia Book as shown on this site. In addition there will be a leaflet from ADDER. I am enclosing ADDER info because they responded within 24 hours to my request and had extra leaflets printed (1000) which they then got to me within 48 hours. In addition they have always responded within 2 days whenever I have communicated.
I did originally communicate with TDS in February, March and April but never got replies so I gave up.
They did eventually send me a few leaflets though but owing in part to the mistakes and I didn't really think they were suitable (print too small) I'm not using them further.
However when i visit schools through the work at www.oxford-conferences.com I show the groups the posters and leaflets and ask for comments from a marketing point of view. (The conferences are about Business Studies) I will be sending the comments to TDS whent he conferences finish.
The money from the conferences will finance the booklet and postage (about £1500) and I am also having a poster printed. This is based on the poster produced by NSTA whom I have been negotiating with. I have found them extremely supportive and helpful and strongly recommend that people visit www.torticollis.org. Lindy especially has been very helpful. The poster is quite stunning and (I hope) will seriously raise awareness. It is designe dfor noticeboards (A3) as I feel the A4 poster size would struggle to achieve effect.The TDS one used to be A3 and that's fine but the new one is A4 and - according to the schools I have shown it to so far, not eyecatching.
So the posters and booklet and leaflet will be going out soon.
I also contacted 90 journalists who write for the various newspapers and mags but to no avail so I will go and visit a few when I have time.
In terms of the CD as there have been 3 orders then that will wait a bit as it's reasonably time consuming.
If any visitors from non-UK see this then please feel free to contact me. I would add that I have often invited the TDS hierarchy to post in the forums here but none have.
chris@osl-ltd.co.uk
I did originally communicate with TDS in February, March and April but never got replies so I gave up.
They did eventually send me a few leaflets though but owing in part to the mistakes and I didn't really think they were suitable (print too small) I'm not using them further.
However when i visit schools through the work at www.oxford-conferences.com I show the groups the posters and leaflets and ask for comments from a marketing point of view. (The conferences are about Business Studies) I will be sending the comments to TDS whent he conferences finish.
The money from the conferences will finance the booklet and postage (about £1500) and I am also having a poster printed. This is based on the poster produced by NSTA whom I have been negotiating with. I have found them extremely supportive and helpful and strongly recommend that people visit www.torticollis.org. Lindy especially has been very helpful. The poster is quite stunning and (I hope) will seriously raise awareness. It is designe dfor noticeboards (A3) as I feel the A4 poster size would struggle to achieve effect.The TDS one used to be A3 and that's fine but the new one is A4 and - according to the schools I have shown it to so far, not eyecatching.
So the posters and booklet and leaflet will be going out soon.
I also contacted 90 journalists who write for the various newspapers and mags but to no avail so I will go and visit a few when I have time.
In terms of the CD as there have been 3 orders then that will wait a bit as it's reasonably time consuming.
If any visitors from non-UK see this then please feel free to contact me. I would add that I have often invited the TDS hierarchy to post in the forums here but none have.
chris@osl-ltd.co.uk
[May 11, 2004 13:12]
New Dystonia Site
The Dystonia Society have at last relaunched their website. This site links to their site - see the logo on the left.
Sadly they have chosen not to link here. Equally sadly, despite repeated requests they do not link to www.oxford-conferences.com which, considering the site details conferences that have raised literally hundreds and hundreds of pounds for the Dystonia Society, is a great pity.
Nonetheless, we take the view that the more Dystonia Sites the better so the link from here will continue.
Their site has not chat room nor Forum which is also a pity as at the December meeting at the Dystonia Society in London, it was stressed that the Forum is perhaps the most important component of any dystonia site as the information about dystonia is widely available elsewhere.
Sadly they have chosen not to link here. Equally sadly, despite repeated requests they do not link to www.oxford-conferences.com which, considering the site details conferences that have raised literally hundreds and hundreds of pounds for the Dystonia Society, is a great pity.
Nonetheless, we take the view that the more Dystonia Sites the better so the link from here will continue.
Their site has not chat room nor Forum which is also a pity as at the December meeting at the Dystonia Society in London, it was stressed that the Forum is perhaps the most important component of any dystonia site as the information about dystonia is widely available elsewhere.
[April 19, 2004 16:40]
Raising awareness
This website was featured in Webuser, the UK's best selling magazine.
They said:
"The site is well-designed, using a two-tier navigation system that incorporates a main menu on every page and a dynamic secondary menu to help move around each section....On the content side the site is excellent. We particularly enjoyed the 'Stories of Hope' from the 'Being Positive' section. ......the site is likely to go from strength to strength and if that helps people suffering from dystonia, it has to be a good thing..."
They said:
"The site is well-designed, using a two-tier navigation system that incorporates a main menu on every page and a dynamic secondary menu to help move around each section....On the content side the site is excellent. We particularly enjoyed the 'Stories of Hope' from the 'Being Positive' section. ......the site is likely to go from strength to strength and if that helps people suffering from dystonia, it has to be a good thing..."
[March 18, 2004 00:43]
More money raised!
Please visit here
Another teacher and I have written a Case Study analysis. 100% of the sales price will go to support this site.
Hopefully we'll raise £00s!!!
Another teacher and I have written a Case Study analysis. 100% of the sales price will go to support this site.
Hopefully we'll raise £00s!!!
[March 16, 2004 22:52]
If you don't ask you don't get!
Please visit Scotch Pie
I wrote to them as follows:
Hi
Please visit:
this site right here
As you'll see I am raising money for disabled people who have Dystonia.
I have been looking at the logo for the Dystonia Society. If you'd care to make a suggestion as to improving it (the Dystonia Society banner is on the left hand side of the site) then i can submit it....and on the 'donations' or the 'sponsor' section I'll plug your site?
A stunning idea?
regards
chris
************
They replied:
"Hi Chris,
We would be happy to help, will speak to my brother and see if we can come up with some things for you. Just a couple of questions...
1. Have you a style in mind? (seen something you like)
2. have the colours to stay the same?
3. What is the graphic mark in the D mean/portray?
If you can help with the above I will see what I can do for you.
Regards
Stovie"
Isn't that great? It just shows that if you simply ask people there are plenty who will help....
I wrote to them as follows:
Hi
Please visit:
this site right here
As you'll see I am raising money for disabled people who have Dystonia.
I have been looking at the logo for the Dystonia Society. If you'd care to make a suggestion as to improving it (the Dystonia Society banner is on the left hand side of the site) then i can submit it....and on the 'donations' or the 'sponsor' section I'll plug your site?
A stunning idea?
regards
chris
************
They replied:
"Hi Chris,
We would be happy to help, will speak to my brother and see if we can come up with some things for you. Just a couple of questions...
1. Have you a style in mind? (seen something you like)
2. have the colours to stay the same?
3. What is the graphic mark in the D mean/portray?
If you can help with the above I will see what I can do for you.
Regards
Stovie"
Isn't that great? It just shows that if you simply ask people there are plenty who will help....
[March 5, 2004 21:46]
Supporting other charities
Two of the people involved with this site have given prizes for the prize draw at this auction
The Auction and Prize Draw is raising funds for Power International.
Power International is a UK charity dedicated to improving the quality of life of disabled people throughout the developing world. POWER achieves this by developing disabled people’s organisations, finding out what disabled people need, and ensuring those needs are met both locally and nationally.
The auction is on Saturday March 6th at Henley on Thames.
If anyone reading this can attend I am sure you'll have a good time - and of course, help support Power International.
The Auction and Prize Draw is raising funds for Power International.
Power International is a UK charity dedicated to improving the quality of life of disabled people throughout the developing world. POWER achieves this by developing disabled people’s organisations, finding out what disabled people need, and ensuring those needs are met both locally and nationally.
The auction is on Saturday March 6th at Henley on Thames.
If anyone reading this can attend I am sure you'll have a good time - and of course, help support Power International.
[March 5, 2004 11:40]
Expert Patients Programme
People with long-term health problems will be able to get free help and advice through a new course run by Oxford City PCT: The Expert Patients Programme.
The Expert Patients Course will help people living with long-term conditions such as diabetes, asthma, arthritis, ME and Parkinson’s, learn how to manage their particular illness more effectively.
The Expert Patients Programme recognises that people with all kinds of long-term health problems deal with the same kind of issues every day. Attending a self-management course like the Expert Patients Programme helps people gain more knowledge about their condition, so they can learn how to recognise and act on their symptoms. Participants are taught techniques to reduce pain and stress and are given advice on managing relationships with family, friends and healthcare professionals.
All the available evidence shows that people who have attended self-management courses, such as the Expert Patients Programme, have experienced positive results. Those taking part also have the opportunity to become volunteer course tutors and run courses themselves.
Read more at here
The national site is here
Why not become a tutor?
Are you a good listener? Are you motivated? Do you want to make a positive difference to the life of others? Become a course tutor and help others manage their long-term conditions.
For more info go here
The Expert Patients Course will help people living with long-term conditions such as diabetes, asthma, arthritis, ME and Parkinson’s, learn how to manage their particular illness more effectively.
The Expert Patients Programme recognises that people with all kinds of long-term health problems deal with the same kind of issues every day. Attending a self-management course like the Expert Patients Programme helps people gain more knowledge about their condition, so they can learn how to recognise and act on their symptoms. Participants are taught techniques to reduce pain and stress and are given advice on managing relationships with family, friends and healthcare professionals.
All the available evidence shows that people who have attended self-management courses, such as the Expert Patients Programme, have experienced positive results. Those taking part also have the opportunity to become volunteer course tutors and run courses themselves.
Read more at here
The national site is here
Why not become a tutor?
Are you a good listener? Are you motivated? Do you want to make a positive difference to the life of others? Become a course tutor and help others manage their long-term conditions.
For more info go here
[March 3, 2004 07:41]
Joint Ventures - 4
One of the projects under consideration is the possibility of raising finance to provide all people with Dystonia with a computer and Training to enable them to have Interent access.
Initial enquiries have been made to Hairnet.
Further news will be announced here.
Initial enquiries have been made to Hairnet.
Further news will be announced here.
[March 3, 2004 07:39]
The Dystonia Book
Ten days ago every Branch Chairperson and every Area Contact of The Dystonia Society was contacted asking them to respond by April 2004 with numbers of the Dystonia Book required.
No replies have been received as yet but it is early days.
The book will be published and distributed entirely free of charge and will be funded by donations, conferences at schools plus personal savings.
If anyone reading this and is not a member of TDS but would like a copy of the book then please email in.
Thanks
No replies have been received as yet but it is early days.
The book will be published and distributed entirely free of charge and will be funded by donations, conferences at schools plus personal savings.
If anyone reading this and is not a member of TDS but would like a copy of the book then please email in.
Thanks
[March 3, 2004 07:35]
Two Friendly Web Designers
Anand (a former student of OSL) and his brother Anuj have very kindly offered their services to maintain and update this site.
I meet with Anand on 5th March so if anyone has any ideas as to improvements, facilities etc then please either post in the Forum here and/or email Anand direct at anand.lakhani@pre-cog.com
This site is for EVERYONE. Sadly not everyone has internet access - hence the production of the 'Dystonia Book' (see 'The Project') which, when complete, will be published and distributed to everyone in the UK.
I meet with Anand on 5th March so if anyone has any ideas as to improvements, facilities etc then please either post in the Forum here and/or email Anand direct at anand.lakhani@pre-cog.com
This site is for EVERYONE. Sadly not everyone has internet access - hence the production of the 'Dystonia Book' (see 'The Project') which, when complete, will be published and distributed to everyone in the UK.
[March 3, 2004 07:32]
Joint ventures - 3
Regular visitors to the Forum will know that we have been actively considering how to raise awareness with GPs and Neurologists.
This raising awareness is very very important - a point made by email from 'Vera' when she writes: " As you are probably aware there are a lot of doctors out there who are not aware of this disease either. So a batch of leaflets sent out to doctors surgeries and hospitals, would help doctors and the general public be made aware of this condition."
There's no point in hanging around over this sort of thing so I have emailed ADDER to see if they have contacetd all GPs and if not whether they would consider a joint venture.
It is not the purpose of this site to duplicate services elsewhere - more to make sure that maximum efficiency and maximum exposure is achieved.
This raising awareness is very very important - a point made by email from 'Vera' when she writes: " As you are probably aware there are a lot of doctors out there who are not aware of this disease either. So a batch of leaflets sent out to doctors surgeries and hospitals, would help doctors and the general public be made aware of this condition."
There's no point in hanging around over this sort of thing so I have emailed ADDER to see if they have contacetd all GPs and if not whether they would consider a joint venture.
It is not the purpose of this site to duplicate services elsewhere - more to make sure that maximum efficiency and maximum exposure is achieved.
[March 3, 2004 07:13]
Joint ventures - 2
In conjunction with Duncan Williamson a booklet will be published that analyses the AQA AS Business Studies Case Study. This will be available from here and also here after March 22nd.
The booklet will be priced at £1 with the entire proceeds going to support this site.
Please visit Duncan's site.
The booklet will be priced at £1 with the entire proceeds going to support this site.
Please visit Duncan's site.
[March 3, 2004 07:11]
Joint Ventures - 1
I have been slightly hesitant about announcing these joint ventures as agreements have only recently been finalised. However I am happy to say that an Agreement has been reached with St Mary's School, Wantage to advertise a book sold under their Young Enterprise Scheme.The book is published by 4Gone Conclusion and they use the proceeds to support the Make-a-Wish Foundation UK
Please visit their site.
I used to teach at St Mary's School, Wantage It is an excellent school for many reasons. Certainly their lunches are the best I have ever tasted - no small point for me!
Please visit their site.
Please visit their site.
I used to teach at St Mary's School, Wantage It is an excellent school for many reasons. Certainly their lunches are the best I have ever tasted - no small point for me!
Please visit their site.
[March 3, 2004 07:05]
Success!
Owing to the success of this site I have been awarded a grant of £2000 from UNLtd
This should enable even further distribution of the book.
This should enable even further distribution of the book.
[February 17, 2004 16:03]
More television interest
Platinum television wanted to base a show round OSL and this site but....it would have taken too much time.
Nice to know interest is spreading though.
Nice to know interest is spreading though.
[February 14, 2004 08:35]
More raising of awareness
[February 13, 2004 12:19]
TV appearance
Yesterday I was interviewed on Television
This was to discuss this website and also, of course, dystonia.
Hopefully this will continue to raise awareness.
This was to discuss this website and also, of course, dystonia.
Hopefully this will continue to raise awareness.
[February 2, 2004 22:53]
Neurological Charities Talk Shows
Doug Evans and colleagues are using an After Dementia Millennium Award to organise four talk shows in the East Midlands. The panels of experts will comprise members of the research teams at Nottingham Queen's Medical Centre and the staff of other local hospitals and organisations. They will speak and answer questions on research and medical care relating to a wide range of neurological conditions including Dystonia, Alzheimers's Disease, Parkinsonism and Multiple Sclerosis.
Admission is free and open to all but for refreshment purposes the organisers would like to know who is likely to attend. If you or any relative or friend will attend please send an email to maryrawitzer@ic24.net (& cc to grahamwhite@tinyworld.co.uk ) or leave a message on 07950 463712 stating your name, telephone number and how many seats you would like for each event. All the talk shows will take place on Wednesdays as follows:-
25 February, 6.30 - 9.30 pm Ivanhoe College, North Street, Ashby de la Zouch
10 March, 6.30 - 9.30 pm Long Eaton College, Lower School Entrance, Ashgrove (off Myrtle Road), Long Eaton
24 March, 6.30 - 9.30 pm Bemrose Community College, Uttoxeter New Road, Derby
7 April, 1.00 - 5.00 pm Burleigh Community College, Thorpe Hill (off Schofield Road) Loughborough
[January 30, 2004 04:24]
Visitors come.....
Visitors come to the site. Some stay. Some make suggestions. Some pass through and move on.
Despite all the work that has been put in to this site, with pictures of people with dystonia, extensive explanations about dystonia on the 'About' page and 25+ pages of information (plus Spotlight articles, Success Stories, a Forum, links to a radio station, links to scores of other sites about dystonia plus of course the 'Dystonia book!) it seems that raising awareness is still a huge problem.
In the Times Educational Supplement Forum one of the Judges posted about the Essay Competition.
It seemed no-one was interested.
Another post appeared and at least one teacher did visit: 'Inky'.
Inky wrote:
"Sorry Canajun but the Dystonia site needs a lot of work. A definition of Dystonia might help! As it is, a lot of knowledge is assumed. "
TES Staffroom
Clearly something is going wrong when someone visits here and despite all that is on show still does not really know what Dystonia is!
I hope 'Inky' comes back - and brings Elaine C who in the same forum says: "
I thought it might be a newly reformed state in the Balkans. "
Help us to raise awareness - tell your pupils...spread the word!
Despite all the work that has been put in to this site, with pictures of people with dystonia, extensive explanations about dystonia on the 'About' page and 25+ pages of information (plus Spotlight articles, Success Stories, a Forum, links to a radio station, links to scores of other sites about dystonia plus of course the 'Dystonia book!) it seems that raising awareness is still a huge problem.
In the Times Educational Supplement Forum one of the Judges posted about the Essay Competition.
It seemed no-one was interested.
Another post appeared and at least one teacher did visit: 'Inky'.
Inky wrote:
"Sorry Canajun but the Dystonia site needs a lot of work. A definition of Dystonia might help! As it is, a lot of knowledge is assumed. "
TES Staffroom
Clearly something is going wrong when someone visits here and despite all that is on show still does not really know what Dystonia is!
I hope 'Inky' comes back - and brings Elaine C who in the same forum says: "
I thought it might be a newly reformed state in the Balkans. "
Help us to raise awareness - tell your pupils...spread the word!
[January 26, 2004 23:23]
Dr Oliver Bandmann
Dr Oliver Bandmann is carrying out an important research project concerning dopa-responsive dystonia (DRD) at Sheffield University. This will be partly funded up to 2005 by a grant from the Dystonia Medical Research Foundation in the USA. People might be able to help with Dr Bandmann’s research who either :-
Take levadopa / carbidopa / Sinemet / Parlodel / bromscriptine as part of their treatment for dystonia or
Have a family history of dystonia or
Were born in an area which is known to have a high incidence of dystonia
If you or anyone you know falls into one or more of these categories and is willing to help Dr Bandmann with his research, which will be of benefit to dystonia patients throughout the world, please let Graham White know so that he can summarise the information received and pass it on to Dr Bandmann. His address is 33 Goodwood Road, Wollaton, Nottingham, NG8 2FT. If any medical professional reading this item prefers to get in direct touch with Dr Bandmann or his research fellow Stefanie Klaffke contact information can be supplied by Graham, if required.
Graha, can be contacted at: grahamwhite@tinyworld.co.uk
Take levadopa / carbidopa / Sinemet / Parlodel / bromscriptine as part of their treatment for dystonia or
Have a family history of dystonia or
Were born in an area which is known to have a high incidence of dystonia
If you or anyone you know falls into one or more of these categories and is willing to help Dr Bandmann with his research, which will be of benefit to dystonia patients throughout the world, please let Graham White know so that he can summarise the information received and pass it on to Dr Bandmann. His address is 33 Goodwood Road, Wollaton, Nottingham, NG8 2FT. If any medical professional reading this item prefers to get in direct touch with Dr Bandmann or his research fellow Stefanie Klaffke contact information can be supplied by Graham, if required.
Graha, can be contacted at: grahamwhite@tinyworld.co.uk
[January 24, 2004 13:26]
Donations
More donations arrived today - THANK YOU. each and every donation will be listed - however big or small as it is VITAL that everyone knows what has been givena nd what it has been used for. Charities do not necessarily list all money donated, giving totals instead but this site is ultra transparent. Not only are people urged to participate but all financial help will always be shown.
[January 24, 2004 00:01]
Word is spreading....
Posts about this site have appeared on www.tes.co.uk (thanks Paddy) and also the Healing Holistix board (thanks Paddy and Lynn).
Any more 'spreading' is welcome
Any more 'spreading' is welcome
[January 17, 2004 01:04]
To our American Visitors: AWARENESS
I read this email from Jennifer Molski of the Dystonia Foundation
It is placed here to try and maximise readership.
Dear Dystonia Friends:
We have received word from Peter Cohen that his story is scheduled to
appear on NBC's TODAY show on Thursday, January 29, 2004 between the
hours of 8:00 to 8:30 AM EST. Please remember that as always, this
story may get replaced by other news of the day.
To maximize this national visibility on dystonia and DBS, we encourage
you to identify persons in your area with a DBS-related story to tell
and contact your local media. Let us know if you would like a copy of
the press materials and guidelines.
Should you need assistance with this follow up effort, please phone
Peter Cohen directly at 207-767-0065 or e-mail at
peter10@prexar.com
Thank you,
Jennifer Molski
Dystonia Foundation
It is placed here to try and maximise readership.
Dear Dystonia Friends:
We have received word from Peter Cohen that his story is scheduled to
appear on NBC's TODAY show on Thursday, January 29, 2004 between the
hours of 8:00 to 8:30 AM EST. Please remember that as always, this
story may get replaced by other news of the day.
To maximize this national visibility on dystonia and DBS, we encourage
you to identify persons in your area with a DBS-related story to tell
and contact your local media. Let us know if you would like a copy of
the press materials and guidelines.
Should you need assistance with this follow up effort, please phone
Peter Cohen directly at 207-767-0065 or e-mail at
Thank you,
Jennifer Molski
Dystonia Foundation
[January 16, 2004 12:47]
Visit to Porton Down
I received this message from Christine Chapman.
"Please find below the tentative details for our trip to Porton Down. I have tried to email everyone I have contact details for and I would ask you to let anyone in your local groups know about these dates. I think I have
covered someone from each branch in this email so I would ask if you could
bring this up at your next meeting should I not be in attendance. I do not
need final numbers till much nearer the time but would request that anyone
who wishes to come contact me directly. Numbers are not limited and this
event is open to anyone in the Dystonia Society and their colleagues. I will need to issue formal booking forms because of the security at Porton Down as I will need people's details for entry to the site."
Contact: James@jchapman14.fsnet.co.uk
"Please find below the tentative details for our trip to Porton Down. I have tried to email everyone I have contact details for and I would ask you to let anyone in your local groups know about these dates. I think I have
covered someone from each branch in this email so I would ask if you could
bring this up at your next meeting should I not be in attendance. I do not
need final numbers till much nearer the time but would request that anyone
who wishes to come contact me directly. Numbers are not limited and this
event is open to anyone in the Dystonia Society and their colleagues. I will need to issue formal booking forms because of the security at Porton Down as I will need people's details for entry to the site."
Contact: James@jchapman14.fsnet.co.uk
[January 14, 2004 17:43]
Raising Awareness
[January 13, 2004 13:45]
Community Interest Companies
CICs: Community Interest Companies. A new form of Social Enterprise for the non profit making community
Having become interested to find out what CICs are, here are a few links that you should find interesting:
Please note: CICs don’t exist yet. The discussion at the DTI and Treasury relate to the Companies (Audit, Investigations and Community Enterprise) Bill that is currently passing through Parliament.
You need to scroll right to the end of this PDF (pages 10-12) to read about CICs Link One
However, the information on auditing and so on that's in this file is interesting too!
Link Twosays this:
The Community Interest Company (CIC) will be a new type of company, designed for social enterprises who want to use their profits and assets for the public good. CICs will be easy to set up, with all the flexibility and certainty of the company form, but with some special features to ensure they are working for the benefit of the community. CICs will report to an independent regulator on how they are delivering for the community and how they are involving their stakeholders in their activities.
CICs will require legislation, covering a regulator, a community interest test, and community interest reports. Subject to Parliament, we expect the earliest date for registering as a CIC will be early 2005.
Following this link, Link Three you can see the kinds of arguments for an against CICs that organisations such as
· Association of Chief Executives of Voluntary Organisations
· The Cooperative Party
· ICAEW (Chartered Accountants)
· Directory of Social Change
have made. That page contains a sample of the comments received.
Link Four is an introductory page at the DTI that is an easy to read introduction to Social Enterprises (SE) and has a number of links to SEs as well as CICs and more.
Social enterprises are businesses distinguished by their social aims, by the way they use their surpluses to achieve these aims; and by their ownership and management structures. Social Enterprises employ several million people across Europe, contributing to their economies and society
Link Five
What is Social Enterprise Link Sixis a page devoted to explaining what SE is and who does it. Here are six examples of SEs to start with:
Examples
The FRC Group
The Big Issue
The Co-operative Group
Impact Community Developments
Pack IT
Future Health and Social Care
For more examples of social enterprises with lots of detail see their publication Guide to Social Enterprise at Link Seven
Two Case Studies of Social Enterprises that you will find in the Guide to Social Enterprise PDF are:
GreenWorks
Greenworks contracts with companies in the city of London to dispose of their waste furniture.
Green-Works got started thanks to an entrepreneur with social commitment, drive and skills to make it work. It has found, and delivered to an untapped niche market. Its added value means that clients are prepared to pay more to fund its social goals. Green-Works is an example of how a social enterprise can 'join up' the agendas of private, public and community sectors.
Link Eight
TREES
TREES stands for 'Training, Regeneration, Education, Employment, Sustainability'. Its roots are in Leicester Housing Association (LHA), a 'housing and regeneration agency' founded in 1973. Today LHA manages more than 7,500 homes across 32 local authority areas.
Link Nine
Finally, the DTI has a Social Enterprise Unit whose home page is at Link Ten and this page has several very useful looking links to follow!
[I] Note: this information was provided by Duncan[/I]
Having become interested to find out what CICs are, here are a few links that you should find interesting:
Please note: CICs don’t exist yet. The discussion at the DTI and Treasury relate to the Companies (Audit, Investigations and Community Enterprise) Bill that is currently passing through Parliament.
You need to scroll right to the end of this PDF (pages 10-12) to read about CICs Link One
However, the information on auditing and so on that's in this file is interesting too!
Link Twosays this:
The Community Interest Company (CIC) will be a new type of company, designed for social enterprises who want to use their profits and assets for the public good. CICs will be easy to set up, with all the flexibility and certainty of the company form, but with some special features to ensure they are working for the benefit of the community. CICs will report to an independent regulator on how they are delivering for the community and how they are involving their stakeholders in their activities.
CICs will require legislation, covering a regulator, a community interest test, and community interest reports. Subject to Parliament, we expect the earliest date for registering as a CIC will be early 2005.
Following this link, Link Three you can see the kinds of arguments for an against CICs that organisations such as
· Association of Chief Executives of Voluntary Organisations
· The Cooperative Party
· ICAEW (Chartered Accountants)
· Directory of Social Change
have made. That page contains a sample of the comments received.
Link Four is an introductory page at the DTI that is an easy to read introduction to Social Enterprises (SE) and has a number of links to SEs as well as CICs and more.
Social enterprises are businesses distinguished by their social aims, by the way they use their surpluses to achieve these aims; and by their ownership and management structures. Social Enterprises employ several million people across Europe, contributing to their economies and society
Link Five
What is Social Enterprise Link Sixis a page devoted to explaining what SE is and who does it. Here are six examples of SEs to start with:
Examples
The FRC Group
The Big Issue
The Co-operative Group
Impact Community Developments
Pack IT
Future Health and Social Care
For more examples of social enterprises with lots of detail see their publication Guide to Social Enterprise at Link Seven
Two Case Studies of Social Enterprises that you will find in the Guide to Social Enterprise PDF are:
GreenWorks
Greenworks contracts with companies in the city of London to dispose of their waste furniture.
Green-Works got started thanks to an entrepreneur with social commitment, drive and skills to make it work. It has found, and delivered to an untapped niche market. Its added value means that clients are prepared to pay more to fund its social goals. Green-Works is an example of how a social enterprise can 'join up' the agendas of private, public and community sectors.
Link Eight
TREES
TREES stands for 'Training, Regeneration, Education, Employment, Sustainability'. Its roots are in Leicester Housing Association (LHA), a 'housing and regeneration agency' founded in 1973. Today LHA manages more than 7,500 homes across 32 local authority areas.
Link Nine
Finally, the DTI has a Social Enterprise Unit whose home page is at Link Ten and this page has several very useful looking links to follow!
[I] Note: this information was provided by Duncan[/I]
[January 11, 2004 13:32]
Providing resources free
Had a meeting with Theo from Altered Communications today.
Very provisionally we have agreed to co-produce a CD for those who suffer from dystonia.
In keeping with the ethos of this site, the CD will be distributed ENTIRELY FREE to all those with dystonia.
This - potentially, is very good news.
The CD will be of the 'relaxation' type but designed specifically for those who suffer from dystonia
Very provisionally we have agreed to co-produce a CD for those who suffer from dystonia.
In keeping with the ethos of this site, the CD will be distributed ENTIRELY FREE to all those with dystonia.
This - potentially, is very good news.
The CD will be of the 'relaxation' type but designed specifically for those who suffer from dystonia
[January 9, 2004 15:55]
Those with whom you do business
In December I attended a meeting with The Dystonia Society
It is interesting how many people we meet in our daily life that we 'could' tell about Dystonia.
I run OSL
During the course of a week I often have contact with other businesses - printers, distributors, suppliers etc. I have started, slowly, to write to them, drawing their attention to this site and asking that they at least visit. In so doing awareness continues to be raised.
If they choose to sponsor...that would be nice...
It is interesting how many people we meet in our daily life that we 'could' tell about Dystonia.
I run OSL
During the course of a week I often have contact with other businesses - printers, distributors, suppliers etc. I have started, slowly, to write to them, drawing their attention to this site and asking that they at least visit. In so doing awareness continues to be raised.
If they choose to sponsor...that would be nice...
[January 9, 2004 15:50]
Alternative therapists etc
Today I emailed friends who have friends on such sites as Healing Holistix and also Healthy Pages
So many of the posts there are from people who clearly have a lot of care and compassion to give.
I have asked my friends simply to draw their attention to this site - and if they then choose to offer help then that would be wonderful.
Many posts talk about karma and the benefits of doing good deeds.
I am just offering an opportunity
So many of the posts there are from people who clearly have a lot of care and compassion to give.
I have asked my friends simply to draw their attention to this site - and if they then choose to offer help then that would be wonderful.
Many posts talk about karma and the benefits of doing good deeds.
I am just offering an opportunity
[January 8, 2004 01:34]
Landmark Films
Landmark Films made a pilot documentary about dystonia and showed the pilot to Channel 5. Channel 5 have agreed it and now the documentary will go ahead. As I appeared in the pilot docu (along with several other people) I am asking Landmark for some stills for this site.
I hope they will be able to send some.
Also the final programme should significantly raise awareness among the general public about dystonia.
That's a definite good thing.
Landmark still need people with dystonia who are willing to be featured. They have asked me to publicise this:
Dear Sir/Madam
I am currently working on a 3 x 60 min television series for Channel 5. Ch5 have asked us to prepare a series on 'Extraordinary Illnesses' or conditions. The idea is that in each programme we will feature, in a very sensitive and sympathetic way, how the condition affects the everyday lives of people with the particular condition. We would also like to show the therapist involved with the patient and how they manage the condition over a period of time. The main criteria is that the condition is quite unusual to see, and that there is patient with an interesting experience to follow. As a result I have been looking at various conditions which are ?visible? and easily filmed, but where cognitive/intellectual capabilities are intact.
Dystonia fits this criteria and is interesting because it covers such a wide variety of muscles, it can appear very different from person to person. It is also interesting because although not curable, it can be treated and a significant improvement can be seen through botox injections, and sometimes surgery. Luckily, we have now been commissioned by Channel 5 to make a one hour documentary on Dystonia. This is great news in raising awareness about a condition very few of the general public have heard about.
I do have some people on board already but I am interested in speaking on the phone to other dystonia sufferers who have interesting stories to tell. We will then narrow down our shortlist to people we think would be good for the programme. The programme will probably feature 7/8 people with dystonia (all ages and backgrounds) to show the range of the condition, plus 1 or 2 main cases who we can follow through the programme having treatment be it botox for the first time or surgery/Deep Brain Stimulation. These cases will give the programme some kind of forward narrative i.e a beginning, middle and an end. WE WILL START FILMING IN FEBRUARY.
I am interested to hear from people with all forms of dystonia, and all ages and backgrounds. It helps if there is an interesting aspect to their story e.g mother and daughter who have dystonia; a younger person in their 30s; someone who had to give up their career; someone who has recently been diagnosed; someone about to have botox or surgery for the first time in the first part of next year; someone who feels it has effected their lives/relationship/work; someone for whom it has been and still is an emotional struggle. However, we do want to balance the heavier side with lighter stories too i.e people who have learnt to live and manage their condition with a sense of humour...
I will quickly tell you a bit about us as a company - We're a British company making top quality documentaries for the UK broadcasters. We've specialised in making warm, engaged, human, personal films that attract large audiences and garner very positive reviews. Landmark started as a company two years ago and since then we've made 18 films. A lot of our work has featured people and conditions who would often be regarded - and sometimes dismissed - as "different" and I know we've treated them and their particular dilemmas with humanity. It's a requirement of our producers that they show the film to the contributors before it airs
Please get interested people to drop me a line with when their condition started, how long they have had it, how it affects their lives, if they have botox or not...etc Feel free to email emma@landmarkfilms.com or call on 01865 427 301 I look forward to hearing from members soon
Emma Goddard
Assistant Producer
Landmark Films
Lawrence House
2a Polstead Road
Oxford, OX2 6TN
ENGLAND, UK
tel: +44 (0) 1865 420692
fax.+44 (0) 1865 420690
email:emma@landmarkfilms.com
www.landmarkfilms.com
I hope they will be able to send some.
Also the final programme should significantly raise awareness among the general public about dystonia.
That's a definite good thing.
Landmark still need people with dystonia who are willing to be featured. They have asked me to publicise this:
Dear Sir/Madam
I am currently working on a 3 x 60 min television series for Channel 5. Ch5 have asked us to prepare a series on 'Extraordinary Illnesses' or conditions. The idea is that in each programme we will feature, in a very sensitive and sympathetic way, how the condition affects the everyday lives of people with the particular condition. We would also like to show the therapist involved with the patient and how they manage the condition over a period of time. The main criteria is that the condition is quite unusual to see, and that there is patient with an interesting experience to follow. As a result I have been looking at various conditions which are ?visible? and easily filmed, but where cognitive/intellectual capabilities are intact.
Dystonia fits this criteria and is interesting because it covers such a wide variety of muscles, it can appear very different from person to person. It is also interesting because although not curable, it can be treated and a significant improvement can be seen through botox injections, and sometimes surgery. Luckily, we have now been commissioned by Channel 5 to make a one hour documentary on Dystonia. This is great news in raising awareness about a condition very few of the general public have heard about.
I do have some people on board already but I am interested in speaking on the phone to other dystonia sufferers who have interesting stories to tell. We will then narrow down our shortlist to people we think would be good for the programme. The programme will probably feature 7/8 people with dystonia (all ages and backgrounds) to show the range of the condition, plus 1 or 2 main cases who we can follow through the programme having treatment be it botox for the first time or surgery/Deep Brain Stimulation. These cases will give the programme some kind of forward narrative i.e a beginning, middle and an end. WE WILL START FILMING IN FEBRUARY.
I am interested to hear from people with all forms of dystonia, and all ages and backgrounds. It helps if there is an interesting aspect to their story e.g mother and daughter who have dystonia; a younger person in their 30s; someone who had to give up their career; someone who has recently been diagnosed; someone about to have botox or surgery for the first time in the first part of next year; someone who feels it has effected their lives/relationship/work; someone for whom it has been and still is an emotional struggle. However, we do want to balance the heavier side with lighter stories too i.e people who have learnt to live and manage their condition with a sense of humour...
I will quickly tell you a bit about us as a company - We're a British company making top quality documentaries for the UK broadcasters. We've specialised in making warm, engaged, human, personal films that attract large audiences and garner very positive reviews. Landmark started as a company two years ago and since then we've made 18 films. A lot of our work has featured people and conditions who would often be regarded - and sometimes dismissed - as "different" and I know we've treated them and their particular dilemmas with humanity. It's a requirement of our producers that they show the film to the contributors before it airs
Please get interested people to drop me a line with when their condition started, how long they have had it, how it affects their lives, if they have botox or not...etc Feel free to email emma@landmarkfilms.com or call on 01865 427 301 I look forward to hearing from members soon
Emma Goddard
Assistant Producer
Landmark Films
Lawrence House
2a Polstead Road
Oxford, OX2 6TN
ENGLAND, UK
tel: +44 (0) 1865 420692
fax.+44 (0) 1865 420690
email:emma@landmarkfilms.com
www.landmarkfilms.com
[January 7, 2004 23:47]
Essay Competition
WE now have four judges for the Essay Competition. One from Canada, two from USA and one from UK.
This means I can now circulate schools.....
This means I can now circulate schools.....
