September, October & November 2004

Flu Vaccination – Is It For You?
Many people with MS wish to have a flu vaccine as increased body temperature associated with fevers can worsen MS symptoms. In addition, research has shown that approximately a third of people with MS who develop flu, have a relapse within six weeks. There is good evidence that such immunisations do not cause relapses.

Current research shows there is no indication that people receiving disease modifying drugs – beta interferon or glatiramer acetate – should not receive the vaccine. However, care is needed for people receiving immune suppressants such as axathioprine or mitoxantrone. During a relapse that is causing significant symptoms, vaccination should be delayed until the person has stabilised or has begun to improve. People with a serious allergy to hens’ eggs should not get vaccinated and it is not generally advised for those who are pregnant.

As always, if in doubt ask your doctor.

Although MS is not one of the long-term chronic conditions listed for a free flu jab in the NHS
Criteria, MS is a long term chronic condition so people with MS who feel they would benefit from this vaccination should discuss their eligibility with their GP. The criteria states it should be made available for people who are:- over 6 months old and have a long-term (chronic) condition, have a lowered immune system due to disease or treatment such as steroid medication or cancer treatment, live in an old people’s home or nursing home and are 65 or over.

The Rapid Response Team
As a number of people who visit the Centre have recently praised the Rapid Response Team we asked them to tell us a little about their service.

We are a multi disciplinary team covering Aberdeen and working from the City Hospital. Since our establishment in the winter of 1999, we have been working hard to reduce unnecessary hospital admissions or to facilitate early discharge home from hospital. The team is funded jointly by Aberdeen City Council and NHS Grampian and has the following disciplines working together – physiotherapy, occupational therapy, therapy assistants, community nursing, community psychiatric nursing, care management, care co-ordinator, administration, housing and carer staff.

Referrals come mainly from community teams, G.P.s, district nursing, and social work staff. Currently referrals have to be made for more than one discipline. Many of our clients have suddenly developed difficulties in coping with their daily activities because of trauma or illness. E.g. a fractured limb or a chest infection. Referrals are also made for the team to support an elderly disabled person, if their relative or carer has become ill and is not able to support them at home. The Rapid Response Team can provide assessment within one working day and establish a rehabilitation programme with the support of carers, if required, within this time scale. When care can not be provided at home, our care managers can look for emergency respite care, in residential homes. Some of our clients are referred to the rehabilitation facilities in the City Hospital, Croft House and the sheltered housing complex at Smithfield Court.

Our client group is generally elderly and frail. Many do not wish to be admitted to hospital. Sometimes there are no beds available in hospital and the team will support clients at home until a bed has been found. During our period of involvement assessment is continuous and decisions are made about on going needs of the clients. If more therapy or care is required at the end of our three weeks involvement, referrals are made to other community teams to ensure continuity of care.

Mile Of Copper Appeal
In eighteen months we’ve raised £1271.45 or grown approx. 706ft. 4in. “Per ardua ad astra.”

Thanks to you all. Keep up the good work.

Policy Makers On The Spot
Following on from the last article in Update, a working party on MS has been set up and has met on two occasions.

Representatives of NHS Grampian, Social Work in Aberdeen, Aberdeenshire and Moray, the MS Society/Stuart Resource Centre and ARMS are involved. Of the 9 people making up the group, 3 have MS.

The main remit of the group will be to review
existing services provided by Health, Social Work and Voluntary organisations and to look at gaps in services.

The working party have been asked to prepare a report on what they hope to do. This report will go to a Core Group of The Grampian Wide Partnership for consideration.

The Grampian Wide Partnership are a group of people from Health and Social Work who plan new services throughout Grampian.

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

Your Best Friend
Honest, faithful, patient, helpful, loving, responsive to your mood and obedient….can also be smelly and mucky. We’re talking about dogs. And in particular dogs for the disabled. We’ve all heard of guide dogs but did you know there were a number of charities that train dogs to help people e.g. hearing dogs, service dogs, therapy dogs and seizure alert dogs.

By developing their natural pulling and retrieving skills dogs can be taught a range of practical tasks that will help people with physical disabilities such as unloading the washing machine, picking up dropped items, fetching the telephone when it rings, switching on lights and opening or closing doors. Some dogs are able to help people with balance difficulties to walk and to help their owners get up if they fall. An assistance dog can help give greater independence, an increased sense of security, renewed confidence, improved health and companionship.

Each dog costs in region of £6,000 to train.

For more information contact Support Dogs on 0114 257 7997, Dogs for the Disabled on 08700 0776600, Canine Partners on 08456 580481 or look up www.adionline.org

Confidence Helps You Cope With MS
These ten tips are drawn from an article in the MS Trust Newsletter “Open Door”. We felt they were so worthwhile we asked permission to
reproduce them.

C – Communicate your needs clearly. It can be very hard for family and friends to guess what, if any, help you need.

O – Organise your day in advance. Identify your priorities, schedule rest periods, be realistic about what you can get done in one day.

N – Negotiate to find the best solution. E.g. It may be possible to work flexi-time to avoid the rush hour or work part-time or from home

F – Fail without feeling guilty. Everyone lets people down sometimes. Don’t be overwhelmed by something left undone or uncompleted just plan your time in future.

I – Improve your fitness. Take advice on starting a gentle aerobic programme that can reduce fatigue and improve mood.

D – Delegate as a matter of course. Don’t struggle with chores if you don’t have to. Someone may have to do the ironing but must it be you?

E – Energy is precious. Make sure you are using at least some of yours in ways that bring pleasure and achievement to you.

N – Notice when people are helpful and let them know how much you value their support. If they are happy to give help, you should be happy to receive and acknowledge it.

C – Courage to admit difficulties and seek out help. Some symptoms can be embarrassing or frightening to discuss but you can be sure your health professionals have heard about them before. Check to see if something can be done to make you more comfortable, active or content.

E – Enjoy all of the things that are good in your life. Don’t let MS take over. Life is like a garden: not all the blooms are perfect, but if you take in the whole picture, there is much to delight.

For a host of further hints and tips, check out the book “300 tips for Making Life with Multiple Sclerosis Easier” by Shelley Peterman Schwarz. We have some copies here at the centre.
You can also download free “Tips for Living with MS” from www.mstrust.org.uk

Summer Breaks Abroad
The long, dark nights of Winter are an ideal time to think about what you’d like to be doing when Summer comes around. One person who visits the Centre and who doesn’t like the heat is finding out about an Alaskan Cruise. Others have other ideas. There are a huge range of holidays available for people who have disabilities. You don’t have to stay at home. To help inspire you, two people who went on holiday report below on what they did in the Summer of 04.

Another Multiple Challenge
Hi there Folks, Well that’s me off the high seas again for another year. This trip was totally different from the one I did 2 years ago. At Gosport I met my fellow crew mates (all English apart from the first mate who came from Loch Gilphead and was called Donald) 9 in all with 7 of us having MS. We sailed that night, with very strong winds, across the Channel to France. The sea sickness was good for the diet.

We first docked on the banks of the River Seine at Pegasus Bridge. We went up to the café bar which was the first house to be liberated in the Normandy campaign and had a few drinks while the Skipper cooked dinner. The following morning we went and saw the museum then set sail again through all the locks up to the wonderful 16th century town of Honfleur. It really was like stepping back in time. We spent two nights there exploring the old buildings and tasting all the fine local wines etc. On the Saturday night we all went and had a fantastic French meal then on to a local bar with French folk music. (I got them singing “Northern Lights of Old Aberdeen” and of course “Flower of Scotland”, much to the embarrassment of my fellow crew mates.)

The following day we had to organise the boat ready to sail across the Channel again. We eventually arrived back at the Beauly River at 5am so we all collapsed into our bunks for a few hours. Then it was off to the Isle of Wight where we had time to get off and have a lovely shower. That night we berthed beside a lovely pub ”The Folly Inn”. Next day we sailed up to Yarmouth. By this time it was getting real windy. After refuelling we left right away as gale force storms were approaching. I think the greatest buzz for me was helming the boat into Portsmouth in a Force 8 gale. It was fantastic.

I had a great time and met some wonderful people who have become good friends as well as raising over £2,000 pounds. You should try it. You would love it. I can’t wait to get back on the boat “Tonic” again and getting those sails up.

Anne McRae

Holiday in Spain
The moment we stepped off the plane in Alicante and saw Jan we knew we were in safe hands, he has such a warm and welcoming smile. We were driven to our holiday villa, which is less than an hour’s journey to be met by Jan’s wife Maria-Anna, at almost midnight, with welcoming arms.

The apartments have everything we needed as regard aids, hoists, shower-chairs etc and all the beds are electric. If there is something you require that is not there, Maria-Anna will do her best to get it for you.

Jan is on hand to take you on excursions any time, and he even delivers fresh bread each morning.

The pool is excellent with a hoist so there were no worries there.

It is so peaceful and quiet, yet only 5 minutes from Benidorm. There are 5 apartments of various sizes and a lovely terrace for relaxing and soaking up the sun.

Every Wednesday there is a get together when our hosts put on a paella meal which Miguel, the Spanish handyman, makes. We sat on the terrace under the trees and ate, drank and enjoyed each others company. There can be a few nationalities but it’s amazing how after a few wines you find it easier to communicate!

We said to Jan one day the only thing that was missing to make our holiday perfect was the Press & Journal in the morning, so he said that he is working on it!

It surely says it all when I say we have booked for the next 3 years. Roll on 2005!

Zena May

Details : Jan & Maria-Anna Niemeijer,
La Sonrisa Bungalows, Carquendo 2, P O Box 75, 03509 Finestrat, Benidorm, ESPANA. Tel. 0034 965878089.
e-mail : la sonrisa@wanadoo.es
Website : www.la-sonrisa.com

Monday Afternoons
We’re considering the possibility of running short courses through Aberdeen College on Monday afternoons. The College offers a very wide range of courses e.g. Computing for the Terrified, Digital Photography, Languages etc. Or we could set up a poetry and book club or drama group or similar. We could look at confidence building courses. Anything that would be interesting, informative, enjoyable and legal will be considered.

We’ve enclosed a short form with this Update, (it’s only been sent to people with MS living within “reasonable” travelling distance of Aberdeen, asking them to let us know their suggestions). Please, please fill it in and return it to us. If you haven’t been sent one but think you might like to come to the Stuart Resource Centre for a Monday afternoon session of “something to be arranged” give us a call on 01224 692777 with your suggestions.

Confused? You Will Be
One member of staff has been driven even battier than usual by regular calls from sales companies and automated calls, usually at the most inconvenient times, telling her that a member of her household entered a competition last year and has won a prize. All she has to do is call a premium rate number (usually £1.50 per minute) to claim. Is this happening to you? And are you fed up with it? She was. A marathon on the phone later and she found out this……

Telephone Preference Service – a free servicethat bars most calls Tel. 0845 070 0707 (or register online at www.tpsonline.org.uk) . Press:-
Button 1 – to register to prevent sales and marketing calls.
Button 2 – for help with receiving silent calls (directed to another number).
Button 3 – to check if still registered with TPS.
Button 4 – if registered but still receiving calls.
Button 5 – to speak to an advisor (put on hold but have an efficient service where you can dial another number for a ring back ).

Silent Call Guard – registration free for one year after which you have to register again .
Tel. 08700 444 3969

Premium Rate Call Bar – handy if you have kids. Tel. 150 and take it from there.

Special Invitation Evening
The Bon Accord Cenre has extended an invitation to all people with MS and their friends to a special pre-Christmas evening shopping event to be held on Wednesday 1st December between 5.30pm and 8.00pm. Most shops will remain open and will be happy to provide services and assistance as requested to those who find shoppping difficult during normal trading hours.

Loch Street and Harriet Street car parks will be free of charge from 5.30pm onwards and attendants will be available throughout the evening. A limited number of wheelchairs are available on a “first come, first served” basis and volunteers from the Boys Brigade and ATC will be
on hand to help with lifts, escalators and to carry out shoping.
The management and staff of the food court have also kindly agreed to serve free trea and sandwiches and a free raffle will also be held.

For those of you who may not wish to rely on “bagging” a free wheelchair, the charity Shopmobility which operates out of the Flourmill Lane car park will also remain open that evening. To reserve a powered wheelchair or scooter or a manual chair together with a car parking space just telephone Aberdeen 630009.

Happy shopping!

Christmas Party
Last year we committed an unforgivable sin of omission – we forgot to advertise our Christmas Party in the Programme. A number of you were not shy about letting us know about our forgetfulness and we then tried to let as many of you as possible know the date and time.

This year it’s “belt and braces”……..
We’re letting you know in the Programme that the Stuart Resource Centre Christmas Party
will be on Thursday 16th December 2004,
between 1.30 and 3.30pm and we’re letting you know here.

Everyone welcome.