May 2004 Newsletter

I anticipate most of you would have started thinking about a relaxing summer break. I know through speaking to several of our members fairly recently that they are worried about the difficulties that can arise when traveling (especially if journeying alone). All I would say is that organization & planning ahead are the key elements for a well-deserved worthwhile holiday. There are many organizations that would be more than willing to assist you if given prior notice beforehand. For those of you that are taking a vacation have a superb time & spoil yourselves, you deserve it. You never know you could come back with some useful information or humorous holiday tales, that I could include in subsequent newsletters.

From the group sec’s desk

Hi everyone,

I do hope that you are all enjoying this brighter weather as I am. I’m always looking for ways to escape the dreaded COR. ST and E.ENDERS and the lighter evenings certainly open other opportunities.

Those of you who know me will be aware of just how important I believe it is for us to maintain momentum in all areas of the group’s development. New challenges seek to test and enlighten us all, hopefully resulting in a successful group responding very much to its members needs. I am so pleased to welcome the input made by Ian Bennett with membership duties and Nigel Bulbeck on secretarial duties, as an integral part of the restructuring programme. Clearly a greater number of participants lighten the individual loads, make them so much easier for others to ‘have a go’ and allow us to hasten forward projects.

The coordinators deserve the biggest thanks for their ideas and enthusiasm. With the time now available I very much hope to help you all on a much more regular basis.

I feel we are pretty close to registering with the Charity Commission, after which I can really take on the fund raising exercise. I am looking for an interested party to work in tandem with me on this one. Both Sheffield and Peterborough conferences are firmed, and very shortly we will be producing an updated flyer reflecting our positives and spelling out our success over the last five years.

This short piece would not be complete without mention to the commitment and persuasiveness put in by Sharon Gradidge assisted by Ian Bennett in the preparation of the super newsletter we all now enjoy.

To close, if you are able; do try to attend either of the larger meetings or the smaller local ones as they come on stream. I learn so much from you all. Enthusiasm is so very contagious.

As always, feel free to telephone me, or drop me a letter at any time.

P.S. There’s always EMMERDALE.

David Pearce

Useful information

REMAP

Alleviating a disability often demands novel solutions matched to the precise needs of an individual. That’s where “REMAP” comes in”.

“REMAP” is a unique charity which for more than 30 years has designed, manufactured & supplied technical aids to disabled persons where there is no suitable commercial item. “REMAP” will also modify commercial equipment to suit the needs of the individual. Most importantly there is” no charge” made to the client.

This is possible because “REMAP” members work for nothing, often use unwanted or discarded industrial materials & sometimes get help from private & government engineering workshops, apprentice schools, colleges of further education, universities & similar organisations.

“REMAP” is one of the UK’s most cost effective charities & its engineers also think ‘green’ when it comes to choosing materials for the job. A lawn mower, defunct dishwasher or car parts will, in skilled hands, often become components of aids that open up new horizons for many hundreds of disabled people.

Many people with disabilities encounter problems in their daily lives which cannot be solved with standard commercial equipment despite the increasing range available. It is that gap that “REMAP” fills, bringing engineering & other skills to bear on one off problems.

“REMAP” panels meet regularly to consider referrals which usually will have been notified to them by occupational therapists, charities concerned with disablement, people with disabilities or family members on their behalf.

Anyone requiring any further information should contact “REMAP”.

Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

There are “REMAP” panels all over the country. If you require more information please contact the “REMAP” head office at:

Hazeldene, Igtham, Sevenoaks, Kent, TN15 9AD.

Disabled drivers' motor club

Annual membership of the ‘Disabled Drivers' Motor Club’ costs only £10.00. Members receive the monthly magazine, "Disabled Motorist" (free), which provides a wide range of useful information. Applications to:

DDMC, Cottingham Way, Thrapston, Northamptonshire, NN14 4PL.

The button that could save your life!

Living alone, an accident in the home or a disability can often lead to worrying, uncertainty & loneliness. However, with Age Concern Aid-Call, there is no minimum age requirement & you will never need to feel alone, safe in the knowledge that at the press of a button, one of your nominated key holders will come to your aid in an emergency.

You can choose two or more contacts from friends, family & neighbours as key holders, in the knowledge that there is always a friendly face to help. In the unlikely event that none of these contacts are available, the switchboard would then contact the emergency services.

Age Concern Aid-Call is a communication system that enables you to call for help at any hour of the day or night, simply at the press of a button. Age Concern Aid-Call gives you independence & security whilst providing you with peace of mind that help is at hand when needed. I have used this service now for approximately 3 years & it has proved invaluable in giving me peace of mind that help is at hand when needed. It is very economical at £2 per week after an initial charge of £5 (this charge may vary slightly in different areas). Like myself, most of you are probably aware; we all are at certain times more prone to a risk of a fall when on our own, whether indoors or outdoors. The button itself is small, portable, convenient & very light & can be worn almost anywhere on your body at your own discretion. If you would like more information or a free demonstration you can call the Age Concern Aid-Call on 0800 77 22 66. Alternatively you may wish to visit their website www.aidcall.co.uk or e-mail This email address is being protected from spambots. You need JavaScript enabled to view it..

Web news

Would you like to find like-minded people & talk about your health condition or an interest, knowing that the other person understands? Then just log onto www.mywavelength.com & choose a topic FSP for instance, although there are hundreds more. Then join a discussion forum or search for people with the same condition. It’s effectively a free world wide health resource, supported by Cancer help, the Terence Higgins Trust & other charities & a way of meeting people who are on the same wavelength. I have been advised that this is quite a new site so people who already know each other won’t overwhelm you – indeed you could be the one to start the ball rolling on a new discussion or a new acquaintance. I’m going to give it try & you never know I could be speaking to you soon.

1st October 2004 and all that jazz

For those of you that are not aware, the 1st October 2004 is a very important day for all of us. On this day the Disability Discrimination Act will become law. From an employment point of view this means that employers cannot discriminate against us or any individual with a physical or mental impairment.

As a result of this I took up the challenge of becoming a “Disability Champion”. This was at the request of my trades union (Amicus). I was then off to London to attend a 3 day course learning about the Act and what employer’s are bound to do to make the working environment accessible to all employees. This does not preclude those people who are looking for work. This therefore means that those of you who would like to work should not be discriminated against due to your disability or impairment.

To put things into the proverbial nutshell, my role will involve making sure that all of my colleagues irrespective of their impairment, are provided with the tools which allow them to successfully carry out their work.

I have already had a success where one of my colleagues has been diagnosed with fibroids on one of her lungs. This person did not have a parking space and had to park a distance away from the office and then walk. As a result the lady in question was arriving at work completely breathless before even starting work. I approached our management and advised that under the DDA this person should have the use of a parking space at the office. Our management accepted this and this lady now has the use of a parking space and a better quality of life.

If you wish to find out more about the Act, look on the web-site under: www.disability.gov.uk/dda/

Administration cost reductions

We are currently striving to reduce our administration costs in an attempt to increase our financial resources, so that extra funding can be allocated to what we see as very important areas. Examples of such areas are meetings, speakers at meetings and their associated costs, research and catering more for individual needs than we have done in the past.

These aspirations are all very relevant to our target of registering as a charity, and we are hoping to begin this process before the end of the current calendar year.

The quarterly newsletter is one of our most popular and important activities, and consequently we have no intention of interfering with this in any way. In fact the situation here is very much to the contrary, and efforts are ongoing in trying to improve the newsletter. However, the cost of the newsletters production and circulation, currently a considerable percentage of the Groups funds, can hopefully be significantly reduced by distributing as many copies as possible electronically. We currently have the e-mail addresses of 74 members on our database, and as from August, we’d like to transmit as many newsletters as possible using the e-mail facility.

Can I ask any members who have supplied email addresses, but do not wish to receive the newsletter in this manner, to please let me know. Similarly, if any members would be happy to receive the newsletter electronically, but have not yet supplied email addresses, please forward me the necessary information. Obviously there will be a couple of teething problems, most likely as a result of errors in individuals addresses within our database, but I’m confident that these can be sorted out within one issue. Obviously, if you’re expected copy of the August newsletter fails to arrive, please let me know and I will forward it using the good old fashioned method. Please don’t let the number of photographs in this issue put you off, as the use of photographs is generally very low, and this issue is the exception to the norm.

Please don’t worry if you haven’t discovered the world of email, and the above makes no sense to you. Nothing will change, and your friendly postman will continue delivering your newsletter.

I B

Annual subscriptions 2003 - 2004

On 31st October 2003, a check was carried out to determine the number of subscriptions still outstanding. The total was surprisingly high at 30 members, nearly 1/6 of our membership at that time It was decided that we would chase all 30 outstanding subscriptions, and eventually, following five resignations and several payments, we reduced the figure to zero. I’d like to thank those who were on the hot line, in particular Jane Bennett, David Pearce and John Moore.

M F – Treasurer

Regional news

Region 4 (West Country) Get Together

On Saturday 3rd April at 3pm, nine of our West Country members met up for the second region 4 get together, at the Barn Owl public house on the outskirts of Exeter. Although the attendance was lower than our meeting last June, I couldn’t have been more satisfied with the afternoon’s proceedings.

In hind sight, I think the fact that there were only nine of us proved to be beneficial. We sat around a table in the corner of the Barn Owl, drinking mainly coffee and soft drinks, although I must confess that our most westerly member; David Jeffery and I felt it was important to sample the local brew. This scenario led to a very relaxed atmosphere and the conversation never stopped. The following topics were discussed in some detail:

  • Benefits – Particularly Disability Living Allowance
  • The Motability Scheme
  • An individual’s possible entitlement to a disabled facilities grant
  • Ones legal requirement to inform DVLA of any medical problems
  • How, if at all, FSP has effected ability to drive, especially reaction time
  • Fitting of hand controls to assist driving
  • Possible entitlement to Vehicle Licensing exemption
  • Acupuncture
  • Aromatherapy
  • Reflexology
  • Functional Electrical stimulation (FES)
  • Physiotherapy
  • Genetics and Genetical testing
  • Early retirement induced by FSP
  • The Group’s aim to register as a charity

Without exception everyone in attendance shared information and knowledge of high interest and importance. It amazed me just how much nine people can cover in three hours, and regardless of the particular topic of discussion, there was always at least one person very interested in learning from another’s knowledge or experiences. I’ll be planning another meeting some time around October, where I’d hope to learn that individuals have benefited from some of the topics discussed.

Thank you to the Barn Owl and in particular Paul (Assistant Manager) for his help with arrangements.

Thank you to my good friends, Rachel, Phil, Alfie and Ed for accommodating and entertaining the Bennett family in Exeter over the weekend.

Last but not least, thanks to Judy, Geraldine, David, Tina, Anne, Fergus, Martine and Carolyn for your enthusiasm and great company (for me to miss the Grand National, the company has to be good).

I B

Meeting of Regions 1 & 2 (London & South-East) (Plus members from Region 5 and other adoptees!) 24th April 2004

I had the honour and pleasure of being asked to put forward a short talk to this meeting: more on its detail later, but here is a summary of the event.

Firstly, it's apt to say that this Region is very well supported by its members. Regions 1 and 2 have the largest density of members, plus the benefits of easy travel systems. Thus the count of people attending this meeting was 43. It, like the previous six meetings (held 6-monthly) took place at the very comfortable and suitable Day Centre at Milford, Surrey. Attendants arrived from areas as far apart as Essex and Dorset...including some from neighbouring areas and even Mike Fawcett, who, for the second successive meeting, had journeyed down from Yorkshire.

After the usual settling-in and "How are you?" chats, we broke into 2 discussion groups. We always have a separate room for the carers (on this occasion numbering 12 people). This enables those that care for us to share and discuss some of the problems and difficulties they experience.

The majority remaining then shared three presentations:

1. Stephanie Flower, who, as many of you know, is confined to a wheelchair, gave a repeat demonstration of the amazing assistance that she gets from her dog, Frodo. He has been trained to perform a wide range of tasks like giving her the delivered post from the mat, taking-off her gloves and other clothing, unpegging and retrieving her washing, and dropping the pegs back in their box, helping her out of bed, and a whole range of other things. Stephanie recommends that those of us who are unable to perform our daily duties alone, and whose husbands, wives, partners are not always at hand, should consider obtaining a dog from Canine Partners.

2. I then introduced my own presentation with an explanation of my personal FSP and family history, and followed it by 4 topics which I wanted to become discussion points for the afternoon and/or action points for the future. These were:

  • the obtaining of motability scooters
  • Experience of the Dropped Foot Stimulator, which has now been obtained by four members of our region, and other members are scheduled for assessment shortly, or seriously considering usage.
  • the conversion of my car to hand-controls
  • My own attendance of the local Neurological Gymnasium, where I have been taught appropriate exercising regimes.

3. A professional explanation and demonstration of the Dropped Foot Stimulator was given by Dawn Burrow, Neuro-physiotherapist at a local organisation called, "Heads Up".

This concluding item, linked to the earlier discussions, gave rise to considerable interest, particularly when Les Day and I gave demonstrations of our style of walk, firstly with the stimulator switched off, and then with it switched on. Both of us were able to show that our feet can be placed forwards with adequate uplift, so that our toes do not have to touch the ground until each step is complete. Ian Bennett had already demonstrated his own improvement at a previous meeting, and he has become the driving force of everybody else's interest in obtaining the device, but perhaps the "king of the show" is Peter Axten, who, immediately after implementation, discarded his walking-stick: He has been walking unaided for 5-6 months now!

The afternoon may seem to be given to group discussions but any formality is lost during the last hour which is always dedicated to eating (the food is kindly prepared by Ronald & Katie Hamblin), drinking and the opportunity to catch up with people on a personal / individual level.

My personal thanks to Jane and Mike Bennett for their usual efficient organisation of the meeting.

J M

Region 5

We are looking for a volunteer for the position of area coordinator for region 5, which covers East Anglia, Essex, Norfolk, Suffolk and Cambridgeshire. Stephanie Flower has been helping us with this on a temporary basis, but could now do with a permanent replacement on account of workload. Anyone interested, please contact David Pearce. David will be able to provide full details of what this role entails.

Sri Lankan adventure March 2004

Just to put you in the picture about the extent of my disability, I use two sticks to walk and so I usually pack as little as possible in order that I can carry it on my back. Of course on a longer trip I have to take more luggage and a case which I cannot push very far. Unfortunately I cannot walk much more than around a mile.

I travelled solo to Sri Lanka and met the rest of the party, twenty or so of them, at Colombo airport. To get there I caught the Manchester airport train from Skipton in order to join a B A flight to terminal 1 at Heathrow. I had arranged assistance on the railway by contacting the Arriva customer service line. At the airport station I was met by a railway porter and he conveyed me in a wheelchair together with my case the long distance to the BA booking in desk.

There the airline staff took over and got me through the usual passport and bag/body searches, depositing me at the restaurant/shops so that I could usefully pass the time before my gate number came up on the screen. Suitably fortified, I was then taken to the gate for boarding the plane. The rule is that when boarding, the disabled are given priority and seated before all the others. When leaving the plane the procedure is reversed and we have to stay in our seats until the other passengers have disembarked. So this was followed for my brief hour’s flight to Heathrow terminal 1. The next snag was how to get to terminal 4 to join my Sri Lankan airline flight. Fortunately I was acquainted with and helped to board the “Help Bus” which takes you quite a distance to terminal 4, so a useful aid to remember.

The flight to Colombo took about 10 uneventful hours and then we caught the bus for the four hour journey to our resort at the Tropical Villas Hotel at Beruwala on the West coast. I was not sure what help I was going to receive from the hotel staff but I need not have worried because the Sri Lankans are all delightfully attentive to your needs. I had found out before I went that the hotel possessed a wheelchair. This was immediately produced to convey me to my room. The other aid which I received for which I was very grateful was given by the restaurant waiters. All the meals, breakfast, lunch and dinner and quite a lot of the drinks, except wine, were included in the holiday price. There was no service, the meals were all buffet, and this was where I needed the help. A waiter would always come with me in order to serve me with whatever of the delightful arrays of food I required, and take it all back to my seat.

The reason why I had selected this particular holiday with “Travel Collection”, a branch of Kuoni Travel from Dorking, Surrey, was that you were not overwhelmed through having to go out on excursions, or change hotels on a daily basis. In fact, the delight was the choice of whether you went on a lot, or just a few, was left entirely to you. I therefore was able to idle away the first three days overcoming my jet lag and trying to acclimatise to the really hot sunshine, though I did persuade someone to wheel me down to the beach.

For the remaining 5 days, I was out all the time with a trip to Kandy higher up in the middle of the island where we saw the scores of elephants at the orphanage bathing in the local river. Another trip which showed us all about country life in Sri Lanka took us to a Buddhist temple, also to a local market and to a house where we were shown round and treated to a full scale native breakfast. Another day we had a boat trip and saw various coloured birds and large lizards. Unfortunately it was my greatest difficulty attempting to get off the boat, the distance from the floor to the rim was just too far for my stiff legs. After crawling along on my hands and knees on the path for a while, I was thankfully hauled to my feet by a strong man.

Overall however, what an adventure!! It really was worthwhile going, and I managed, with all the help, to do everything I wanted. Now you can see, provided you do as much research as you can in advance, and carefully select a holiday which is not too demanding, with a little bit of luck, and a little bit more effort, you’ll get there in the end. Please give it serious thought and go out there and see that world. It may be easier than you’d ever imagined.

M F

Sheffield conference on Saturday 5th June

Location

As mentioned in the February Newsletter, this second northern conference will be held at the City Church, Wilson Road, Sheffield. Please note that Wilson Road is off the Ecclesall Road (A625) which runs from the city centre through to places in Derbyshire like Hathersage and the Hope Valley, or to Calver and on to Chapel – en – le - Frith. I mention these routes because they will be used by conference delegates from Manchester and Liverpool.

Directions

A map is enclosed with this newsletter, for members who have confirmed they are attending the Sheffield conference. Apologies that the map detail isn’t crystal clear, but hopefully it will be of some help.

If you are coming from the South, you should leave the M1 at junction 30 and follow the A6135 for a few miles until near the city centre where you will see a left turn called Granville Road. Turn onto Granville Road and this will join the City Centre ring road (St Mary’s Road) heading westwards. This will lead to a roundabout with a left turn onto the A625, Ecclesall Road. Follow this for 2 –3 miles past Hallam University on the right, and then you will come to Wilson Road on the right hand side. Turn into Wilson Road and this will lead you to the City Church.

If you are coming from the North, leave the motorway at junction 34 by the Meadowhall Shopping Centre. Follow the A6109 until you join the Sheffield Inner Ring Road. You will go along Sheaf Street passing Sheffield Railway Station on the left hand side. Turn right at the roundabout into St Mary’s Road, and two roundabouts later turn left into Ecclesall Road. Follow this for 2 –3 miles past Hallam University on the right, and then you will come to Wilson Road on the right hand side. Turn into Wilson Road and this will lead you to the City Church.

For those of you who are staying at the nearby Hunter House Hotel, proceed along Ecclesall Road past Wilson Road, until you come to a roundabout. Go straight on at the roundabout, remaining on Ecclesall Road, and you will see the Hotel on the left hand side. I would advise you not to enter by the front door, as there are many steps up to it. To avoid the steps, go up the street to the back of the Hotel, and park in the small hotel car park.

Catering

To provide the food Kathy Chambers is contacting a catering firm to supply most of the buffet meal but Kathy herself is going to be good enough to provide and produce the drinks. She is also going to produce a selection of fruit.

Minor Clarification

I’d like to take this opportunity to clarify the first sentence in paragraph 5 of the report on the Northern Conference in the February Newsletter. This read: “There are in the area some modern hotels nearby equipped with lifts and car parks”. The following wording would have been more accurate: “in the City Centre there are several modern hotels equipped with lifts and car parks, and this will be more suitable for people who have difficulty managing staircases. For example there are Cutlers’ Hotel, single room prices £39-£59; Grosvenor House, all rooms £49-50, breakfast extra; IBIS Sheffield, rooms £42-50 to £45-95, ground floor bedrooms may be available; Travel Inn, all rooms £49-95, breakfast extra and Travel Lodge, telephone 0870 191 1674, similar price to Travel Inn, but look out for some web offers.

Attendance

Currently 28 members are attending and I thank those who have forwarded £8-00 cheques covering lunch and refreshments.

I am pleased with the very positive response we have had from members in Lancashire, Yorkshire and Scotland. If any of you require any kind of assistance to enable you to attend, please contact myself (Mike Fawcett) on 01756 795480 and I will try to help you. It would be good to try to raise our numbers to at least 30. Would those of you coming who have not yet paid, please promptly forward your cheques to Mike Fawcett.

General Agenda

David Pearce has arranged for a neurological physiotherapist (neurophysio) to speak to us. We will also be addressed by a representative from the “Patients Advice and Liaison Service”, the purpose of which will be to assist people in making the most of their hospital services. As with all our conferences and meetings however, one of the most important aims is for members to meet their fellows, discuss and raise any problems, and time will be allocated for this purpose.

A.G.M. on Saturday 11th September

It has been decided to hold the 2004 AGM in Peterborough, on Saturday 11th September. Please note that this is one week earlier than usual. Please complete and return the enclosed form to enable us to ascertain attendance levels for the September A.G.M. This will be held in the Professional Development Centre. It is understood that our meeting will be housed in two temporary accommodation buildings erected on the centre’s lawn.

This venue has been chosen to attract members from East Anglia and the Midlands, though Peterborough is a mere 90 miles from London. It can be accessed N – S from the A1, and the East Coast main line (Rail).

The agenda for this AGM will be published in the August newsletter, but it should be noted that we are very fortunate that Professor Nick Wood from the National Hospital of Neurology has agreed to address us.

To confirm your attendance at the AGM, please complete and return the enclosed form. If you are interested in attending, but have transport problems, please contact a committee member or your local co-ordinator.

On behalf of the committee and the members, I’d like to express our gratitude to K C, Mike Fawcett and David Pearce for all their hard work in arranging and organising both the Sheffield conference and the AGM.