February 2003 Newsletter

Useful Information

Warm front grant

I know it’s nearly spring time, but still a wee bit chilly. Anyone in receipt of Disability Living Allowance may be able to benefit from the “warm front grant” under the Home Energy Efficiency Scheme. Grants of up to £1000 are available to cover loft and cavity wall insulation, draft proofing, & several of our members took advantage of this last year. If you are interested call 0800 952 0600 (free call) for more information.

New deal for disabled people

The government has introduced “New deal for disabled people” to help sick and disabled people back into work. It is voluntary and you decide whether or not you want to join it. If you join your benefit will not be affected. You will get help and advice before you make any decisions that might affect your benefit, for example, going on a work trial. A range of different organisations will run the “New deal for disabled people” scheme for the government. These organisations will provide job brokers throughout England, Scotland and Wales. You will be able to choose the job broker you want to work with.

Your job broker will be able to give you:

  • Advice about how to get a job
  • Help matching your skills & abilities to what employers need
  • Support when you start work

You can get more information about “New Deal For Disabled People” and details of job brokers operating in your area by:

  • Ringing the NDDP help line on 0800 137 177. People with speech or hearing problems using a text phone can dial 0800 435 550
  • Looking at the NDDP website: www.newdeal.gov.uk

Carer’s website

A carer’s website has been launched by the Department of Health. I accessed this website and found it extremely useful. It can put you in contact with a carer’s centre in your specific area. These centres can offer specialist advice, support, provide counselling, respite holidays, as well as running clubs & activities for children who maybe, as well as coping with school also have demands at home as carers. It also gives carers a chance to meet up & chat & share any worries or maybe just need some “time out”. General information of interest to carers with useful links & the text of the government’s carer’s charter can be found at: www.carers.gov.uk

Redbush Tea

Redbush is a refreshing South African herbal tea with the following characteristics:

  • Caffeine free for a relaxing effect on the central nervous system
  • Low tannin means no bitterness & no need to add sugar
  • No additives, no colourings, no preservatives and no calories
  • Contains flavonoids luteolin & quercetin with antispasmodic properties. Quercetin can help reduce or block the release of histamine to ease allergy symptoms.
  • Contains nine minerals essential for healthy growth
  • Contains magnesium for a healthy metabolism & nervous system

Redbush tea is readily available in over 2000 outlets nationwide. You can find it on the shelves of Holland & Barrett, Morrisons, Waitrose, Tesco, Safeway and Sainsburys. If you would like to find out the nearest stockist or more information, visit: www.redbushtea.com or alternatively contact the customer care line on 0845 601 2658.

For those of you with bladder problems!

For a long time, I had suffered from the inability to empty my bladder properly. This inevitably contributed to bladder urgency problems, it was difficult to last much longer than an hour or so & there were the inevitable problems going to concerts shops or on long journeys.

However, earlier in the autumn, I consulted a new specialist, who said my drugs treatment so far had been unsuccessful, so he thought self-catheterisation might help me. After being admitted to the physical rehabilitation unit at Skipton Hospital, I was instructed in how to single use catheters by the nurses. The technique is that after lubricating the surface of the catheter tube with water you then insert it carefully until the bladder is reached. You may well cry “help, this is going to hurt” but it does not. The bladder drains itself out of the tube until it is fully empty. I am no longer caught out as I can now choose when I want to relieve myself, and I only need to go every 4 hours or so, much better! You always need to take 1 or 2 catheters in your bag or pocket when you go out for the day. I would like your feedback on whether you have ever used this technique and whether it worked for you, and hopefully we can follow this up in subsequent newsletters.

Mike Fawcett

Sharon’s hot tips

If you are not already aware, if you are registered as being disabled, you are entitled to a radar key. This key entitles the holder to use disabled toilet conveniences, throughout the world. As many of us are probably aware, central town centre communal toilet facilities are not always clean, tidy, or by all means appropriate for our needs. This key is available from Radar or your local council (I was advised the reason for these keys being issued, came about because of the increase in vandalism) I found the staff to be very helpful and informative, and all they will ask from you is some form of identification. I have found this key invaluable, especially when travelling long distances, as unless you have a Radar key you will find almost all disabled toilets are inaccessible (especially at night).

I don’t know how many of you suffer from circulation problems (especially first thing in the morning, when your legs will not step into pace). I have found the answer to my prayers in the form of a profiling bed. These beds have a rippling mattress, which can help ease circulation problems as you sleep and they also incorporate a monkey pole (which if like myself, you have problems levering yourself out of bed during the night, is a necessity). The beds are operated by a remote control providing the user with the capability to get comfortable in various positions. These beds are available at no cost to you. All you have to do is contact your local surgery and ask for the district nurse to visit your home. They will assess your needs with regard to issuing you with a bed. I received mine within a week, but please be aware that the availability of these beds may vary in different areas. Take care Sharon.

Plodding on regardless

I had always been a very keen sportsman from my school rugby playing and cross country running days in Devon until my early thirties. Other than a brief beer swilling period immediately after leaving boarding school, when I was introduced to the nightlife and women of Bournemouth (a far cry from sleepy North Devon), I continued with my healthy lifestyle, initially in the form of jogging. The jogging progressed to slightly more serious running and I competed in local 10km road races, the occasional 10 mile race, a half marathon and even a Triathlon. During the same period of time I was a member of Poole Wheelers Cycle Club, and I achieved a personal ambition when completing a 100 mile cycle ride in around 7 hours. Another personal milestone I achieved during this period was completing, without stopping, the annual Boscombe to Bournemouth pier swim. As far as thirty year olds go I like to think that I was in pretty good shape, and I have some proud memories of those active days.

I don’t want to dwell on the next few years too much, but this was when health wise, things started to go a bit pear shaped! For some time, particularly while running, I had noticed a stiffening of my legs, and on occasions I had suffered severe groin pains (It was some years before this and probably in my mid twenties when I first noticed what seemed to be a ridiculous, but now fully understandable problem in walking downstairs). My sporting background, coupled with a bad motorcycle accident at the age of twenty, gave the medical experts good reason to diagnose osteoarthritis. For a couple of years I was treated for arthritis with physio and even steroid injections, before a Chiropractor suggested I had neurological problems, and it was a further 18 months before in October 1999, I found myself at Russell Square to be told I had FSP.

However, life had to go on and I had to find new ways to occupy some of my free time. Three years on from the FSP diagnosis, I have some new sporting activities I’d like to tell you about.

I now play golf at least once a week on a par three 18 hole golf course. Although I would struggle massively if I were to attempt a 2 to 3 mile walk without stopping, I find that when on the golf course I seldom walk more than 150 yards at one time, because that’s as far as I can hit a ball. Furthermore, by the time any competitors have hit their balls, a brief and well appreciated rest has been accomplished, and so the cycle continues. I usually strike about 72 shots during a round of golf, but this of course equates to about 72 rests. Who else gets to rest 72 times a day?

As well as golf, I have recently become hooked on short mat bowls. I am now the captain of a local team and we are maintaining a healthy mid table position in a local league. This is great fun, and even readers who are less able than I, could comfortably participate. Any fellow FSP sufferers, who get the opportunity to take this up, do so. It’s not an old mans sport.

Although I must be honest and admit that I don’t do this activity as much as I used to or as much as I would like, I think I should mention horse riding. Yes! Stop laughing – Horse Riding! Admittedly it’s a dam struggle getting on and off, but whenever I go riding, I notice a distinct improvement in my walking the following day. There are many riding centres that cater for disabled people, and I have often seen people riding with massive disabilities. I use a centre in the New Forest and an added advantage with this is seeing beautiful countryside that I would otherwise miss out on. Don’t shrug it off – give it a try.

I will be 40 in July and I’m already planning the celebrations. 18 holes in the morning, a hack in the New Forest in the afternoon, and an evening in the Rising Sun, revisiting those beer swilling days from the early eighties. Hope to see you all on the 1st tee.

Ian Bennett

AGM September 2002 follow up

I would like to apologise to Paul Charlton the neuro-orthotist who jointly did the presentation with Gita Ramdharry, a senior physiotherapist at University College London Hospitals NHS trust. Paul put a lot of work into his presentation which included many informative and educational approaches with regard to how orthotics can aid mobility and enhance independence. Gita wrote to me and has accentuated that they both feel that the message about orthotic intervention in FSP is an extremely important one.

REMAP

Remap is a unique charity which for more than 30 years has designed, manufactured and 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 and sometimes get help from private and government engineering workshops, apprentice schools, colleges of further education, polytechnics and similar organizations.

Remap is one of the UK’s most cost effective charities and 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 this gap that “Remap” fills.

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.

Further information can be obtained from: This email address is being protected from spambots. You need JavaScript enabled to view it.

Or write to:

REMAP Head Office
Hazeldene
Igtham
Sevenoaks
Kent
TN15 9AD

There are Remap panels all over the country

Not one but two conferences proposed this year

We have been conscious for some time now that our conference venues have been too far away to attract many of our northern members. We thought we would revolutionise things this year by holding our first conference on the 7th June in the afternoon at Wigan Pier in the Greater Manchester area.

We will assemble at midday at the Parlour, at the Trencherfield Mill site of Wigan Pier for a buffet lunch. During the afternoon there will be one or two speakers, and there will also be the opportunity to get to know each other. This will be a scaled down version of our annual conference in September.

The Parlour is well situated with level access and nearby parking. It is spacious and will accommodate up to 80 people. This area is well situated for the Yorkshire and Lancashire folks, but we would hope to attract people from further a field like Cumbria, County Durham, Tyne & Wear, Northumberland & Scotland. To the south we would ask members fro counties like Cheshire, Derbyshire, Nottinghamshire, Lincolnshire, and possibly from North Wales to attend the northern venue. There will certainly be room for additional members, south of the aforementioned counties to attend. If anybody from the more Southerly areas would like to make a booking please contact Carol McGowan.

There are good transport links at Wigan. It has two railway stations namely Wallgate on the East – West line, and another nearby called North – Western on the North – South, Glasgow, Carlisle, Preston and Crewe line. The fares on the west coast main line will be bought from Virgin trains, and if bought early enough are amazingly cheap for single tickets. If you wish to fly, Manchester and Liverpool airports are close by. There are good motorway connections via M6 & M62. If you would like more information about Wigan and Wigan Pier, transport or hotels, please contact Mike Fawcett at your earliest convenience. Thank you.

The second conference will be held on one of the mid-September Saturdays, 2 miles north of Gloucester at the Wallworth Centre which is next door to the Nature in Art Museum. This will be the usual format of the AGM, followed by talks, but with more opportunity this year for members to get together.

Gloucester is on the main railway line between Birmingham and the West Country, and also accessible by rail from South Wales. There is also a connection to London via Swindon & Cheltenham. It is near the M5 & can be approached from London via M40 & A40. We look forward to seeing you there.