September, October & November 2004

Up and Down
Is your life an emotional roller coaster? Do you sometimes take offence where none was meant, feel hurt or rejected for no apparent reason? This is called emotional lability and may be caused by more than the feelings of stress and anxiety that would naturally occur with a diagnosis of MS. It may in fact be part of the cognitive problems that can occur due to demylination and nerve damage.

At it’s most embarrassing there may be uncontrolled episodes of crying or laughter that have little to do with what’s going on. Now a new drug AVP-923 developed by Avonir Pharmaceuticals to deal with these symptoms is expected to be available within the next year.
Trials have shown it can reduce the severity and frequency of episodes.

Excessive Sleepiness
The drug Modafinil (Provigil) can now be prescribed more widely in the UK for excessive sleepiness, a symptom experienced by many people with MS. Excessive sleepiness is more than ordinary fatigue – even the overwhelming fatigue experienced by people with MS. It restricts everyday activities, can lead to poor performance at work and even fatal accidents. In studies Provigil has been shown to act selectively through the sleep/wake centres of the brain. The drug promotes wakefulness without generalised stimulation of the central nervous system. It appears to be effective, well tolerated and can significantly improve quality of life.

Please note that the above links are to an external site and as such we are not reasonable for the content provided. The links are provided for information purposes only.

Stress
Each person defines stress in his or her own way…. We do know that a person’s level of stress is higher during MS relapses….Stress has a negative impact on well-being and poses a risk to a person’s health and relationships. Receiving a diagnosis of MS is a major source of stress for anyone…. It is important that people with MS are not encouraged to make important changes in life based on the notion that stress worsens MS and therefore should be avoided. Strategies for reducing stress may include physical activity, pursuing a hobby, relaxation techniques, self-help groups, etc.

Mood Swings
Mood swings can be described as a rapid fluctuation in mood, with alternating euphoria and depression. While many people have experienced mood swings at some time, it appears that people with MS may be more at risk of this problem. Since mood swings can create difficulty within a family or social circle it is important that the person experiencing them discusses the problem with those around him or her in order to help avoid misunderstanding….Some people find mood-stabilising medications or anti-depressants helpful, while others find counselling beneficial. The objective of counselling in this case is to help the person to learn effective ways of managing unpredictable changes in mood. Often a combination of these solutions can be helpful.

Cognitive Changes
Cognitive functions include the abilities to:-focus, maintain and divide attention, learn and remember information, plan, carry out and monitor one’s activities, think, reason and solve problems, understand and use language, recognise objects, assemble things and judge distances….Cognitive impairments have no known link to any single physical symptom of MS. however, sometimes dysarthria (poorly articulated speech), ataxia (problems with co-ordination) or nystagmus (rapid involuntary eye movements) may be falsely interpreted as a sign of cognitive impairment.

The above are extracts from “MS in Focus” Issue 4, 2004, a 28 page publication by the Multiple Sclerosis International Federation dealing with Emotions and Cognition. A full copy may be downloaded free from www.msif.org or contact the Centre for a copy.

Policy Makers on the Spot
Following on from the meeting of the 21st June which was attended by 40 people with M.S. and Carers and the very useful discussions that arose….

It was agreed at the meeting that a working party could be established to look at existing services, examples of good practice but in particular to look at gaps in services.

Letters have been sent out to people in NHS Grampian, the Social Work depts. in Aberdeen City, Aberdeenshire Council and Morayshire Council.

An initial meeting has been set up for mid September, if it was agreed at the meeting to set up a working party we would probably be looking at meeting at 6 weekly intervals over a period of time until the work was completed.

We will keep you informed of progress in our next Update.

Welcome Mat Out

The Chairman of NHS Grampian, Jim Royal, will be coming to the Stuart Resource Centre for an informal visit on the afternoon of Thursday 16th September between 3.15p.m. and 4p.m.

Call for Visitors
People come to the Centre at various times and for various reasons. Often we’re the first port of call after they’ve been told by their neurologist of a diagnosis of MS. We help them with information and support and then may not see them again for some time. Those coming for the weekly sessions are usually no longer working but still look forward to some sort of regular, organised contact with people outside their immediate family. But what of those who are no longer able to travel to and from their homes? Unfortunately we tend to loose contact with them after a while.

And that’s when having a regular friendly visitor who has some knowledge of MS but who more importantly has the time to sit down and talk about current affairs, television programmes or whatever is worth his or her weight in gold.

The Aberdeen Branch of the MS Society is currently looking for volunteers to act as befrienders and visit people in their own homes. If you think this might be you, please give us a call on
Aberdeen 692777.

Life Begins….
As I reached my 9th anniversary of being diagnosed with MS and my 40th birthday life could have been a lot worse. My MS was fairly stable and I was feeling quite well.

Last year due to family illness I had to spend a week in Hamilton. On the train journey there and back I felt quite sickly and claustrophobic so I was glad to get back home. But after a few days I still didn’t feel great, and then I realised that I had missed a period. Oooops!

The response I got from friends and family was mixed. My daughter who is 13 was upset to start, as she was worried about my health. She soon came round and was then shocked that her Mum and Dad still did IT. Some peoples’ negative responses were quite hurtful and made me think about what this could mean.
The next people to tell were the Consultant, MS Nurse etc. Their reaction was really positive and made me feel much more positive.

My ante-natal care was shared between my GP practise and the maternity hospital. The first doctor I saw at the Matty was the one and only person who suggested a termination. I soon put him straight and voiced my anger and disgust at his automatic assumption that I would want one. I refused to see him again! The rest of my pregnancy went well the only problem being urinary tract infections.

My due date came rapidly closer, I wanted
everything to be as natural as possible. I was feeling big and a bit tired. My 40th birthday was coming up and I wanted to have had the baby by then so I could enjoy a sherry or two.

Friday 9th, the day before my birthday, I had no feel of the baby coming, my family were up from Hamilton and my husband had planned a big family meal for Saturday, my actual birthday. 4 AM. on the Saturday morning I woke thinking “I need the loo“. Three hours later I had given birth to a 5lbs. 14oz. baby girl named Amy.

So life really did start at forty. I am really enjoying being among dirty nappies etc and so far very few sleepless nights. As far as my MS is concerned I don’t have time for it, but it is still there and reminds me every so often.

Susan Park

If you are thinking of having a baby it might be worthwhile reading the “Pregnancy and MS” fact sheet published by The Multiple Sclerosis Society. We also have an excellent book “Pregnancy and Parenthood” that can be taken out on loan.

Artistic Outlooks
Maureen: Last year I was going through the process of getting ill health retirement from work and found myself thinking of new interests. Painting was something I had always wanted to try but whilst working I never had the time or the energy to give it a go. However I had frequently noted that a class met on a Wednesday afternoon at the Stuart Resource Centre so I plucked up the courage to phone and enquire about how good I had to be to join. I was informed that even though I hadn’t painted since my schooldays which were further away than I cared to remember, I should come along and give it a try.

On the following Wednesday off I set – and have done nearly every Wednesday since! The folks there are so warm and friendly as is Jo the tutor who gives us great advice with whatever “masterpiece” we are attempting to create. We had a small exhibition of our work recently and a lot of the paintings were sold. There are still some on view at the centre so why not come along and buy one – the money from the sales is divided between MS research and the Art Group.

I was asked recently what I get out of attending this group. I find it of great therapeutic value as it provides friendship, relaxation and fun and I have discovered that I can now create paintings that people can recognise – and all it took was one phone call!

Lorraine: A cheery “How are you feeling today?” is the question asked by all of the members and an honest answer can be given without sounding like a moan as we are all in the same boat. We discuss anything from giving advice on benefits to trying out herbal remedies and there is some paint put to paper too!!

I enjoy the company very much and feel I learn something about painting every week and have started looking at things in a very different way. I dabble at home which I never had the confidence to do before, so it is pay back time for Mums and Dads – when the kids were at nursery and made something we said “What is it?” Now it is the kids turn to ask that question!!

Agnes : As well as all the other support groups available from the Stuart Resource Centre the Wednesday Art Group is VERY SPECIAL. Jo who takes the group has an organised programme with instruction and ideas but people can follow their own ideas of “artworks” if they want. What is not on the timetable is the conversation, everything from funny stories, jokes of every available shade of the palette, frustration or pleasure in trying to create something. There are even times of intensive silence as we all concentrate on what we are doing.

Monet is reputed to have said that “Art is Therapy”. Certainly Wednesday afternoons are Therapy for this participant.

If you’d like to “have a go” at any of the weekly sessions the Centre provides just come along and drop in. You’ll be assured of a friendly welcome.

Centre Buses
Due to the rising cost of fuel and maintenance to the two buses and the advancing years of the buses the cost of supplying transport to and from the SRC is escalating.

We would like to suggest that all users of the bus could make a voluntary donation to offset the cost, thereby reducing the drain on the centre’s budget. This would ultimately benefit all users of the centre. The donation would be left to the user’s discretion.

Bobby and Reno

Mile of Copper
Thanks to a large number of people who visit the centre on a regular basis coming in often with small bags and cartons of pennies, and of other generous people who may not use the centre on a regular basis occasionally dumping heavy bags of copper on our desks, we are now well on the way to reaching our target.

To date we‘ve travelled 202 yards and 2 inches and raised the satisfying sum of £1091.18p. We’re over a tenth of the way to our target.
Well done everyone and thank you.

E-Mailing all Computer Users
When out shopping the other day, I came across a computer shop “Smart Cartridge”, at 308 George Street, Aberdeen. After having a nice chat with them and a good nosey about, they offered everyone who has MS and goes to the Stuart Resource Centre 10% off anything they buy from them. They have a great idea that if you take your emply cartridge down to them they will refill them. I have a Lexmark and the cartridges are around £30 – £35 each, with Smart Cartridge I can get a refill for £14.99 – a whopping great saving. And remember, if you go and purchase anything just say you have MS and go to the Centre.
Anne McRae

N.B. You may remember Anne from her jaunt sailing round the West Coast of Scotland on Multiple Challenge and raising lots of money for MS in the process. This year she is again participating in Multiple Challenge, joining the boat at Gosport, sailing across the Channel, up the Sienne, visiting Cannes and returning to Britain, hopefully again raising loads of money. Read all about her adventures in the next Update.

New Leaflets
The MS Society is pleased to announce four new items
in their publications range.

MANAGING BLADDER PROBLEMS
Bladder problems can be all too familiar for people with MS. This booklet outlines a first-line treatment route that works well for the majority of people, particularly those with less severe MS. For people who are more severely affected by MS, there are other options to consider that can help to manage bladder problems effectively.

DISEASE MODIFYING DRUGS
Contains practical details for someone considering the drugs (Rebif, Avonex, Betaferon and Copaxone] to people who meet the criteria from the Association of British Neurologists. Includes practical details for someone considering the drugs.

IS THERE ANYTHING I CAN CLAIM ?
This publication outlines some benefits for which you may be eligible.

MULTIPLE SCLEROSIS AND DEPRESSION
This publication includes information on how depression is diagnosed, its connection with MS and how it is treated.

If you would like a copy of any of the above publications please contact the Stuart Resource Centre.

Motability – Is it for You?
Motability is an independent not-for-profit organisation, which provides mobility solutions for disabled people.

There are three main ways in which Motability can turn your mobility allowance into the travel solution for your needs.
A new car on a three-year contract hire lease.
A new or used car on hire purchase, over a term of two to five years.
A new or used powered wheelchair, or scooter on hire purchase, over a term of one to three years.

Most customers choose contract hire as they find it’s the best option to obtain and pay for a brand new car. They like the convenience of a single, regular payment that includes comprehensive insurance (£75 excess), maintenance and breakdown cover and, of course, free
road tax.

Who can apply?
To be eligible for any of the Motability Schemes you must be receiving one of the following benefits:

Higher Rate Mobility Component of the Disability Allowance
War Pensioners’ Mobility Supplement

You should ideally be in receipt of either allowance for the full length of the agreement you choose. But don’t worry, you may still be able to join even if your allowance has not been awarded for the full length of the agreement.

Even if you don’t drive, but receive the allowance, you can apply for a car as a passenger and propose two other people as your drivers. Proposed drivers must not have serious driving convictions, disqualifications, or endorsements within the last five years. There are also restrictions on drivers under 25 and those with provisional licences.

If you would like to receive any publications relating to the Car Scheme, please contact Motability Operations on 0845 456 4566. (www.motability.co.uk)

For publications relating to the Wheelchair and Scooter Scheme, please contact route2mobility on 01264 384480.