August 1999 Newsletter

 

Not so happily, the annual quest for subscriptions has left a sizeable crop of outstanding payments. Gentle reminders are enclosed with this Newsletter... Please remember that if you are of limited means we do not require a subscription - only a statement of your continued interest in the group, and its activities.

Room at the Top

I am pleased to inform you that David Pearce and lan Smith have agreed to join the FSP Group Committee. David will become Secretary with effect from 1st September, and lan will take over the Newsletter from the same date. The choice of date is driven by our need to identify a suitable hand-over point. The addresses and phone numbers of David and lan are:

David Pearce
8 Brinkworth Road
Clayhall
llford
Essex 1G5 0JS
0181 5512905

Ian Smith
17A Bellfield Avenue
Harrow Weald
Middx HA3 6ST
0181 421 5262

I am sure you would wish to join me in wishing David and Ian a successful and fruitful tenure of office. I know the Group needs to move forward, and with your continued support I am sure this will happen under David and Ian's guidance.

Membership Survey

Mike Fawcett has asked me to pass on his thanks to all who returned their questionnaires. A full analysis has already been sent to those who participated, and enclosed with this Newsletter comes a synthesis of Mike's results.

Correction

In the last Newsletter, regrettably I gave false hope to several would-be claimants of carers' discounts on Council Taxes. Apparently carers' discounts are not available to relatives such as husbands or wives, fathers or mothers. However, disabled persons discounts are available to families who have a disabled family member, and whose homes fulfil certain criteria. This discount usually takes the form of a drop of banding, to one band lower than the original classification.

Questions & Answers

From the US National Ataxia Foundation

Q. What is FSP?

A. It is a neurological disorder which is characterised by the gradual development of stiffness or increased tone of the muscles (spasticity) and weakness or paralysis of the lower part of the body (paraplegia).

Q. What are the earliest symptoms?

A. If the disease occurs very early in life, the child may have trouble learning to walk or may gradually lose the ability to walk. If onset is in adulthood there is heaviness or stiffness of the legs, catching of the toes, and stumbling.

Q. What is the outcome of the disease?

A. It is variable from family to family and patient to patient. The disease may progress to nearly complete loss of lower limb mobility requiring use of a wheelchair. In some cases there is never more than a mild stiffness and weakness in the legs. Tendon contractures and high arches may develop. Life span is usually not shortened.

Q. What associated features are found?

A. The spastic paraplegias include a wide variety of related disorders with occasional disturbances of vision, lack of co-ordination, muscle wasting, cardiac disorder and tremor.

Q. What is the inheritance pattern?

A. It is usually transmitted as an autosomal dominant and sometimes as a recessive trait. If dominant, it can be passed directly from afflicted parent to children, each child facing a 50:50 chance of developing the disease and passing it on to the next generation. If recessive, the condition will appear only if a defective gene is received from both parents. The parents are called carriers and are not usually affected. Children of patients are then also carriers but are not likely to develop the disease.

Q. What causes Spastic Paraplegia?

A. It is usually caused by a genetic defect which causes a deterioration of selected ascending and descending nerve fibres of the spinal cord.

Q. What tests can be done to diagnose the condition?

A. Other treatable diseases, such as B12 deficiency, spinal cord compression or midline tumours must be ruled out first. Analysis of amino acids in spinal fluid and blood may uncover some of the rare forms which have a known biochemical abnormality.

Q. What treatment is available?

A. There is no specific treatment which will retard the progressive degeneration of the affected nerves. Some medications will reduce spasticity. Physiotherapy may be advantageous in maintaining muscle strength and balance control. Various assistive devices can keep patients walking for a long time.

Offer to Members

New member Garry Petersen is the sales manager for Premier Telecom. His firm operates a brokerage offering a free service to its customers. The firm will give advice and recommendations on issues such as the BT discount schemes, which alternative network provider to use to gain the most cost effective package for the type of calls that are made, and also which mobile provider and package to chose. You can contact Garry at Premier Telecom on 01553 776510.

Snippit...

New UK Information Service. Disability, Pregnancy & Parenthood International (DPPi) launched its new information service for parents and professionals recently. They will provide information on preconception, pregnancy, birth and parenting from the perspective of parents with disabilities and the professionals who work with them. For details and information about their quarterly journal: 0171 628 2811

And Finally....

On a personal note, I shall be retiring from the FSP Group Committee at the end of this month. My sincere thanks to all who have helped and supported me during my four years 'at the helm'. Warmest regards to you all.'