To help The Neuropathy Trust & RSD uk, to spread awareness of the charities & chronic nerve pain. recently updated with My Personal Aims 24-03-2006 and 27-06-2006.
I feel lucky to have such supportive parents and fiancé, and to be under the care of people who genuinely care about my well being. I have found comfort in the information provided to me by The Neuropathy Trust. To keep me sane and my mind active, I have thought of ways in which I can help myself/the charity and others less fortunate.
My immediate aims (for The Neuropathy Trust)
Nov-Dec 2005
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To spread awareness üWith many thousands of people affected in the UK alone, the campaign for awareness is important.
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To get 500 silicone Wristbands/Awareness Bracelets ü Each individually wrapped, with doubled sided backing card to promote awareness, heat sensitive (colour change from blue to transparent), de-bossed, personalised with:P
LEASE NOTICE NEUROPATHIC PAINCustom made by www.DanUk.co.uk
Hopefully arrive before Christmas, in conjunction with the SYTS carol service
The Neuropathy Trust liked my design of wristband/backing card & placed an order. There are now available to buy.
Please see: http://www.Tap4TTS.co.uk/page15.htm
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The Sylvia Young Theatre School carol service üTo raise money for The Neuropathy Trust, at Marylebone tube/train station…13th & 14th December 2005 4-6pm.
Total amount raised £1,486.13
Please see photos: http://www.Tap4TTS.co.uk/page14.htm
My future aims (for The Neuropathy Trust & RSD UK)
Jan 2006 - onwards
In the hope of success with the sale of previous wristbands, It is a possibility the charity could take over and sell them via their website.
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To have The Neuropathy Trust charity on the list of charities for…The London Flora Marathon - Sunday 23rd April 2006
Unfortunately I have been told that this is currently not possible as there are already 500 charities listed, and no space availability for foreseeable future.
Runner already applied & sent off application form to run independently, awaiting to hear response. He heard about my aim and has offered to run on behalf of The Neuropathy Trust to raise funds & awareness.
Details: Jamie Marlow works as a Tree Surgeon for Dacorum Borough Council
Ÿ 500 silicone Awareness Ribbon Keyrings
De-bossed, personalised with: The Neuropathy Trust
Custom made by www.DanUk.co.uk (Requires help with funds)
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To acquire a signed Football/Shirt (preferably ARSENAL as I’m a fan!)To either auction off or have as a prize by selling raffle tickets
Ÿ To set up my own website re: TTS / PN/NeP / RSD/CRPS Pain ü
With a link to The Neuropathy Trust, RSD UK and other charities to provide sufferers with information on where to get help.
As from 24th November 2005 I own www.Tap4TTS.co.uk
my website.Intent - to provide sufferers of TTS / CTS / PN & NeP / RSD/CRPS / Chronic Nerve Pain information & links to other websites which have been of help to me. Therefore reducing the period of time of endless searching for help.
Ÿ To have Professional Dance groups perform at Brent Cross Shopping Centre
stage area, accompanied with face painting for children & volunteers with collection buckets. The lead up to Christmas, to raise money for The Neuropathy Trust & RSD uk to continue our aim to spread awareness.
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To hold a ‘Jazz Night’in a top London venue to raise money for The Neuropathy Trust & RSD uk charities …with a live jazz band & a collaboration of established/up and coming tap dancers & singers
Including…Bruce Forsyth as host, The Clark Brothers, Will Gaines, Tobias Tak, Derek Hartley, Graeme Henderson, Diane Hampstead, Junior Laniyan, The Jiving Lindy Hoppers, Rosalind James, Terel Nugent, Allyson Brown, & many more…
The Sylvia Young Theatre School - The Rhythm of Life Choir/Le Jazz Hot Cabaret
Millennium Dance 2000 College - Cabaret possibly choreographed by Stephen Mear
My personal aims for TTS sufferers
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To get a logo designed for my website üI personally think that pictures can say more than words. I think that by having a logo/picture to represent awareness of TTS is important. As non sufferers when hearing about TTS might remember a logo/picture that represents the problem. Therefore hopefully creating widespread awareness.
I have handed my rough sketches of the logo to Gemma Hastilow, an Illustrator. She has drawn her interpretation of my badly drawn pictures, and amazing managed to draw the logo as I had imagined.
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To get media awareness (hopefully - GMTV ITV, This Morning Programme ITV, The New Paul O’ Grady Show channel 4, Richard & Judy channel 4)Carpal Tunnel Syndrome is fairly common and most people have heard of it, and many people know of someone who has had it. Tarsal Tunnel Syndrome is not so common - apparently, and most people have never heard of it and cannot even begin to understand the complications that can arise and how if effects sufferers everyday lives. If you are a sufferer of CTS imagine the pain you feel in your hands, then imaging having your full body weight on them. Double OUCH!
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To add a Tap4TTS.co.uk forum/message boardI hope to add this feature, not take away from the other message boards/forums available regarding TTS/PF/Foot problems but to add to the growing need of support. It will tie in with my website and will probably be a quicker way of responding to frequently asked questions.
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To add a downloadable TTS awareness leaflet to Tap4TTS.co.uk…with input from top consultants who are knowledgeable about/have dealt with numerous TTS cases. I feel this is important because it can be hard for family and friends to understand something they can not physically see. Some people will choose to remain ignorant but others would be grateful for the information to try to understand your pain/disability. It can be hard repeating what the problem is and equally hard to convey your everyday problems, by having an awareness leaflet it may be easier to absorb and is something that can be referred back to. Having consultants contribute input to the leaflet will ensure the information is accurate and up-to-date.
Ÿ For Tap4TTS.co.uk to become a registered charitable organisation/trust/foundationI feel that there needs to be a registered organisation where nerve pain sufferers of Tarsal Tunnel Syndrome, friends and family can get information booklets, support and advice as there is currently nothing set up, to my knowledge. Of course with the support of medical professionals and contact with and support of other charities such as The Neuropathy Trust. Developing TTS at any age is hard to deal with and can lead to depression, a feeling of uselessness as day to day tasks become increasing difficult to carry out which can also have a huge impact on family.
Ÿ To get Tarsal Tunnel Syndrome and Plantar Fasciitis recognised as a disabilityIt was surprising to me to be told by non sufferers that TTS (and PF also known as Heel Spurs) is something can you can live with. People can be ignorant to something they cannot see. Most of us do live with TTS / PF because we have no choice. It can be disabling, it causes pain, lack of sleep, can lead to depression, it definitely effects your quality of life and more and more people are having to quit work because of it! I have had emails from other sufferers of TTS and PF around the world all saying the same thing…that they wish they could have their legs removed so people could then see that they have a disability!
Extract from email dated 21/05/2006
'...sometimes when I got depressed I thought that it would be much better if I cut off my legs. Then people would see that I'm a cripple ... I'm sure that's not a good way of thinking. But this phantom pain does make you scream inside...' *Anon from Serbia (PF & Neuropathy sufferer).
Ÿ To encourage more research into why NVC and EMG tests are not reliable…to see why they often fail to show us sufferers a reading of the entrapment we have.
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To help make aware that MR Neurography scan is needed in the UK/Europe…it is available in the US, so why not here? It is a long way to travel to the US and is costly, although I have not had this scan yet… if it really does what it is said to, it is important we have one that is more assessable for European residents.