Issue No 11 June 2004

M.S. News - Orkney

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AGM…

Our AGM was a month late again this year because of the weather, but eventually took place at the end of March.
The committee stays the same except for Betty Stanger who stood down this year. We thank her for all her hard work and enthusiasm, which she put into our meetings and coffee afternoons. We are of course delighted to welcome Lesley Cole as another new committee member.

Summer Outing…

Our summer outing was well attended again this year. It was a repeat performance of last year at the Holm Community Centre, which meant plenty of room for everyone both to move around and get seated.
Marina Miller again did the catering with her helpful team of workers, giving us an excellent choice of menu.
We had the pleasure of Drramm’s first class entertainment, with their very enjoyable selection of instruments and tunes. / Raffles were drawn before the evening came to a close.

Yoga changed to Thursday’s…

Jenny Marriott wishes people to know the Remedial Yoga sessions finish now on the 14th June until Thursday the 23rd September at 2pm in the Kirkwall Community Centre. This change of day does not now clash with the MS Therapy Centre’s treatment days.
Jenny is also running a five week Community Education Class “The Eightfold Path of Yoga”, this summer in the Dounby Centre, from 1st - 29th July. This class is suitable for all ages and ability levels.

Coffee Afternoons…

Coffee afternoons will restart again in September. Check in the local paper.

Orkney MS Website…

Don’t forget to check our very own website. Matthew Cole updates it regularly.

Have a lovely summer…

Rhona
Full
details
inside….

Catrin is fourth from the left in the front row

Sponsored Walk

Our Support Co-ordinator’s daughter Catrin Sutherland who is ten, organized all by herself, a sponsored walk for the MS Society, from the Glaitness School and around Scapa, with some of her friends last month.

They completed the walk and raised the impressive sum of £200.

Our thanks go to all those involved in the walk and of course the public for their generous support.

Goat Serum Trials….

In the May/June issue of MS Matters you may have read a report on a new clinical trial using goat serum for people with secondary progressive MS. The issue has been the focus of some media interest. Recruitment for the trial has now closed with 80 places filled. Results are not expected until the end of the year and the research team at the MS National Centre will be monitoring progress closely.

House Adaptation Services

A new service has been launched to help disabled and older people adapt their home so they can live more safely, conveniently and independently.
Anyone who is applying for a Disabled Facilities Grant (DFG) to adapt their home and needing to employ professional designers to plan and oversee the work can contact the House Adaptations Advisory Service (HAAS) to be put in touch with the right experienced people.
HAAS is the only UK-wide register of health care professionals, architects, surveyors and other related professionals who have a demonstrable knowledge of the housing needs of disabled and older people. Its database also contains details of members’ experience of other small-scale projects including community and day centres. Users of the service are sent a list of all the members in their region, with details of their prior work, free of charge.
For further information on HAAS and to find a professional designer in your area contact:
Paul Highman, Principal Information Officer, Centre for Accessible Environments, Nutmeg House, 60 Gainsford Street, London SE1 2NY
Tel/textphone 020 7357 8182
Email

What is a Disabled Facilities Grant?

A disabled facilities grant is designed to help you meet the cost of adapting your property for your needs if you are disabled.

To be eligible for a disabled facilities grant, you must be:

  • an owner-occupier
  • a private tenant
  • a landlord with a disabled tenant
  • a local authority tenant or housing association tenant.

There are two types of disabled facilities grants - mandatory and discretionary.

Discretionary
A grant can be awarded for adaptations which will make the property more suitable for the accommodation, welfare or employment of the disabled occupant.

Mandatory
A grant can be awarded for:

  • facilitating a disabled occupant's access to and from the dwelling
  • making the dwelling safe for the disabled occupant and others residing with him or her
  • improving the heating system to meet the disabled occupant's needs, or providing a suitable heating system
  • facilitating access and movement around the home

I found this on the MS website. Funding is not always available through Care and Repair when you need it, and thought this could be another option.

A new treatment for tremors….

Up to 75% of people with MS are estimated to experience tremor. The most common form in MS is called essential (or intention) tremor (ET), which occurs when people want to do or reach something. Octanol (a type of alcohol) alleviates tremor in animal models, but its effects are not known in humans. This study aimed to assess the tolerability, safety and effectiveness of a low dose octanol (which is used as a food flavouring), on ET.

Twelve participants with ET received capsules of either 1-octanol or placebo. The intensity of the tremors was measured before treatment, and up to 6 hours afterwards, using a device attached to the arm, which registered the amount of movement.

Results showed that a single dose of 1-octanol significantly reduced the intensity of tremor for up to 90 minutes after administration. There was no change in tremor in the placebo group. Minimal side effects were reported - 2 of the 6 participants receiving 1-octanol, and 1 in the placebo group developed short lasting headaches, which responded to paracetamol. There were no signs of intoxication.

These preliminary findings suggest a potential role for the use of 1-octanol in ET, although only 6 people received the treatment in the study. Further studies on the tolerability, effectiveness and potential side effects, as well as the duration of action of larger doses are proposed.

Cannabis has been reclassified….

The Misuse of Drugs Act 1971 classifies illegal drugs in two ways - according to the penalty for the possession and use of them, and according to whether they have any medical benefit.

From the 29th January 2004, cannabis has been reclassified under the above Act, from a ‘Class B’ to ‘Class C’ drug. On doing so they are recognizing that cannabis is not as harmful to health as other Class B drugs like amphetamines.

Cannabis still remains illegal across the UK to supply and possess, with the maximum sentence for possession reduced from five years in prison to two years. The maximum penalty for possession with intent to supply stays at 14 years in prison.

For medical use cannabis is currently a ‘Schedule 1’ drug, which means it is considered to have no proven medical benefit. If the cannabis-derived clinical trials from CAMS (Cannabis in MS) and GW Pharmaceuticals are granted licences, we would expect them to be moved to ‘Schedule 2 drug’, allowing doctors to prescribe them.

MS as art…

I was intrigued to read an article artist Jean Baitey wrote, regarding the images her MRI formed. The condition and its effect on her body caught her imagination and led her to explore new grounds in her work.

With funding from the Arts Council and SuffolkCountyHospital, she has been able to launch an exhibition of her work at IpswichHospital where she was treated. She told media, “I thought it would be a first to have a patient/artist working through their health issues. I was confronting my demons in many different ways. It was me discovering myself and how I was feeling. The more knowledge you have the less daunting it seems. This was my way of finding out about MS and coming to a better understanding of the condition. It is an unknown quality as you never know how it is going to affect you. At the moment I’m a very mild case but you never know what will happen in years to come.”

Her own MRI scans also provided a rich vein of inspiration. “To look at MRI is weird and a bit spooky, you think it can’t be you - is all that really going on inside your head? I wanted to show how it is possible to work around what might be considered a problem and through my visual images express some of the different feelings I have encountered. My work seeks to be medically informative and touch on some of the more oblique personal thoughts and humorous associations one might have, including a wonder and knowledge gleaming from medical imagery.”

I thought that was a good follow up to my positive strategy from the last newsletter. Also it would have been nice to have seen your MRI results. Did any of you get that chance?

A Latin Proverb from Mary Eunson

The best physicians are Dr Diet, Dr Quiet and Dr Merryman.

A poem I got from Maureen Gray (Yoga teacher)

Peace
Easeful body
Peaceful mind
Joyful spirit
Useful existence
Slow down / Expand your heart
Still your mind
Nourish your body
Honour your soul / Peace in your thoughts
Peace in your heart
Peace in your world
May we all have peace

Om shanti, shanti, shanti

Peace

YOUR COMMITTEE….

Chairperson:Rosemme Guthrie, Rinansey, Grassick Court, Kirkwall874596

Secretary:John Chesters, Blackhill, Blackhill Road, Kirkwall....873116

Treasurer:George Hannah, 2 Olaf Place, Kirkwall...... 872479

Support Co-ordinator:Perry Sutherland, Sutherleys, GrainPark, Kirkwall...874624

Editor:Rhona Elrick, 12 Hordaland, Kirkwall...... 875152

Betty Cameron...872140Annie Linklater...875064

Matthew Cole....771794John Mackie....781475

Lesley Cole.....771794 Bessie Muir.....875104

Evelyn Goar.....871856Olivia Taylor.....831621

Lynn Groundwater874037George Walker...850534

Norah Harcus...870284Shelagh Walker..850534

Sheila Konstam..872821

We hope you have enjoyed reading this Newsletter. What did you think about it? Did it enthuse you/inform you/disappoint you/bore you silly? We want to know. We welcome contributions and ideas for the future editions - please call Editor on 875152.

Remember, this is your newsletter, your branch. Use it. Get involved!

PS. please pass this Newsletter on to friends, family, non-members who have MS or anybody else you think it may interest.

Deadline for next Newsletter: 15th August 2004

‘MS News’ is published by the Orkney Branch of the MS Society. We give regular updates about MS and what is happening locally in the MS community.

All the views expressed in this publication are individual and not necessary the view or policy of the charity and its supporters.

Charity number 207495