This is our quarterly magazine produced and edited by Sara Morris   if you have anything that might be of interest please contact her, address and phone numbers are in the online magazine

Just click on the Knot to view

or right click to download

(select "Save Target As...")

Disabled Discounts

Following on from the last edition of Knotty Matters, Phil Mien has kindly prepared a list of money-saving offers.

Phil reports:

"As we all know living with MS takes its toll financially, as well as physically. When we were working we had more money coming in, now MS has stopped our earning potential there is less disposable income, but read on, there are great savings to be made"

Did you know that:

ODEON FESTIVAL PARK - By paying £5 for a Cinema Exhibitions Association Card this allows the carer to accompany a disabled person free of charge. The card lasts for three years.

NEW VICTORIA THEATRE, BASFORD - Free for the carer when accompanying a disabled person. Plus a disabled parking space can be reserved in advance and the parking fee waived.

REGENT THEATRE, HANLEY - Drops the price of its top banded tickets by £4 per ticket when you mention you are disabled.

STAFFORDSHIRE MOORLANDS - offers a Leisure Key which allows free admission for disabled to swimming baths. Ask at your local Council to find out what "deals" they can offer

NATIONAL TRUST - admits the carer free of charge.

WARM FRONT - offers grants for loft insulation, complete or partial central heating systems. This is means-tested. Telephone: 0800 316601 1 to see if you qualify.

BRITISH TELECOM - offers free directory enquiries to disabled. Apply to BT for a form explaining your condition. On completion of the form. which will need to be signed by your GP you will be given a number to quote when ringing Directory Enquiries enabling the service to be used free of charge. Call Freephone 195.

BUS TRAVEL - is free for disabled. Apply to the local council to obtain a bus pass which lasts for several years.

M6 TOLL ROAD - Free pass for disabled drivers after paying initial registration fee. Tel: 0870 850 6262 or visit the website: www.m6toll.co.uk

RAIL TRAVEL FOR DISABLED PASSENGERS
For £ 14 you can purchase a railcard which then entitles you to a third off the cost of most train journeys. One adult travelling with you gets the same discount. This can be a big saving and well worth considering getting a railcard.
Application Helpline: 0845 605 0525.
People registered as having eyesight difficulties or those who stay in their own wheelchair throughout a rail journey receive a discount without having to apply for a railcard. This discount applies to someone travelling with you and varies between 34% and 50% for journeys.

Assistance for rail travel.This should be pre booked and means that a member of staff will meet you at the station and assist you to get on the train, and if you change trains, you will be met off one train and assisted onto the next. This is for all disabilities and
you do not need to be in a wheelchair to ask for assistance!
A useful telephone number is 08457 443366.

You can call this number to enquire about train times, make a booking and book disabled assistance throughout the journey.

Phil Mien (Support Team)

27/03/2007

MS and the Fatigue Factor

by Pamela Martin, Suite101.com

I am often reminded of the time I set out for what was to be a short walk.  Struggling with an armload of groceries, I was in a hurry to get home.  Unfortunately, I came upon construction debris in the road, and was forced to take a detour around the mess. 

As fate would have it, the path I chose was deceptively circuitous.  As one road led way to another, I discovered that I was going in circles.  My legs grew weary and the load heavier as I continued through the winding course.  By the time I stumbled home, I was completely and deathly exhausted.  In short, I used much more energy navigating through the twisting and zigzagging course than if I’d been able to use the more direct approach. 

My experience is illustrative of the process at work in MS.  Myelin-damaged roadblocks force the communication mechanisms of the brain to take less effective, and roundabout routes.  This inefficient detour can result in a burdensome fatigue for the person with MS, both physically and mentally.

Physical Fatigue

When asked about MS-specific fatigue, many sufferers anecdotally describe it as "bone-tired" or a "wearing a suit of armor" feeling.  It differs from normal fatigue in that there is generally no easy correlation between the amount of energy expended and the severity of the weariness.  You would expect someone who just scaled Mt. Olympus to feel extremely exhausted.  You would not expect that same level of exhaustion from someone who merely cooked a simple dinner.  Yet, the problem is not simply an amplification of normal fatigue.  There are many more nuances involved in this symptom.

MS fatigue is often variable, sometimes unrelenting, and generally appears regardless of the amount of sleep the patient gets.  Some patients find that although they regularly get a full night’s sleep, they awaken in the morning un-refreshed.  Many require a scheduled nap in the afternoon when the fatigue is at its worst levels.  For me, I have found no connection between the total rest I get, and the way I feel at any given moment.  There have been times where I have gotten plenty of sleep the night before, but spent the next day in a zombie-like stupor, where even the simplest task requires a superhuman effort.  On the other hand, there have been times where I made it through an unusually busy day, yet felt no ill effects for several days.

Mental Fatigue

Not only does MS fatigue drain a patient physically, but it can also cause mental distress.  Remember the child’s game of trying to pat your head and rub your stomach at the same time?  It was hard to concentrate on both tasks at the same time, so ultimately, you ended up not doing either chore very well.  Many people with MS can relate to that feeling of being mentally overwhelmed.  Often, the dysfunctional nervous system is working overtime, processing the enormous sensory data that we experience daily.  Because the process is disrupted and inefficient, it may be difficult to hold a conversation and listen to background music at the same time.  Or someone may find it impossible to drive at night because the array of lights and sounds are disconcerting.  Similarly, I was once struck dumb and unable to answer a store clerk who simply asked me for my telephone number.  Because my senses were already overloaded from the shopping experience, my brain simply shut down when faced with a simple question.  At that moment I was just mentally worn out.   

What Causes MS-related Fatigue?

Although scientists have no definitive answer, a couple of likely theories are presented regarding the cause of MS fatigue. 

Location, Location, Location.   One theory holds that fatigue is related to the loss of myelin--the protective coating of the nerve fiber.  The locations where the myelin loss occurs are responsible for the severity and type of fatigue.  In this scenario, it is the cerebral abnormalities themselves that contribute to fatigue.  The random placement of myelin lesions or loss could account for the variety of ways people with MS experience the symptoms of fatigue. 

Interestingly, a 1999 study found fatigue severity did not correlate with myelin scarring or deterioration as observed on MRI. (1)  Correspondingly, a 1998 study suggested that the differences in fatigue levels could not be solely explained by the degree of disease activity or disability. (2)  There is certainly a great need for more study in this area.

Poor Body Functioning.  It has also been speculated that the general deterioration of overall functioning as a result of having MS may simply exhaust the body’s storehouse of energy.  Muscle weakness and decreased nerve conduction are the obvious culprits.  But some researchers have noted that altered metabolism and inadequate respiration are other energy-depleters.  Again, further investigation is needed in this area.