Information on HRT drugs (hormone replacement therapy) will no longer have to contain a warning for MS. Until recently all HRT products had a “precaution for MS” even though the evidence for this warning was described as “unsatisfactory”. The HRT product warning meant women with MS, some of whom may stand to benefit by taking HRT in menopause, were often not considered for HRT because of their MS. Advice for all women approaching menopause is now the same – consult your doctor and remember that you are an individual and should be treated accordingly. It is a matter of looking at the balance between benefits and risks for the individual.
– The report of the Cannabinoids in MS (CAMS) trial due to be presented on 14th July has been postponed. Due to the large volume of data, analysis could not be completed in time and the rescheduled investigator meeting will now take place around early to mid September. The CAMS trial is the largest to date in the UK involving over 660 patients in a number of different centres.
– “Sativex” a cannabis based aerosol drug that is sprayed under the tongue has been submitted to the Medicines Control Agency for approval. The drug is said to alleviate pain and spasms in MS. If approved the drug could be available on NHS prescription (probably through hospitals) quite quickly.
Brian Adam MSP
Local MSP Brian Adam visited the Stuart Resource Centre to discuss various topics pertaining to MS. His visit came about after a letter was written to him asking for his support to lobby Parliament for extra funds for a research project into the causes of MS. This is being carried out at Aberdeen University by Professor Chris Linington (an internationally renowned MS researcher).
Mr Adam was going to find out about the medical fund, but first he is to be given more information about Professor Linington’s work to make his task clearer.
It was also mentioned by Mr Adams that national research funding goes mainly to 4 large English universities, Aberdeen is not one of them.
The next topic concerned the lack of respite care for younger people within Aberdeen. We were advised to contact the local council but Mr Adams would also contact social work on our behalf to see if there is anything on the agenda for the future.
NEUROLOGIST WAITING LIST
We asked why there was almost a year’s wait before a person could see a senior neurologist? If a patient could be seen quicker, the chance to be put on to disease modifying drugs (Beta Inteferon etc.) could slow down progression of the illness.
Mr Adam is going to find out whether Aberdeen has a shortage of neurologists compared to other major Scottish cities. He was also going to ask about the cannabis oral spray.
CARE IN THE COMMUNITY
It was thought a lack of suitable care was a problem, especially at weekends. This again was a social work concern, and we should be writing to our local councillors about it.
We asked that more money was needed to be put into the system from the Scottish Parliament.
We asked who was responsible for the cost of making public places accessible for the disabled. Whether it was the government or the owners of the premises.
Mr Adams has contacted several people on our behalf and we hope to get some answers soon. We must thank him for a very open discussion taking on subjects not his usual criteria. He is sending us information as he receives it. We will welcome him and any other colleagues back again.
Respite Care at Nairn
St. Olaf Manor is a “Centre of Excellence” that blazes new path ways in care provision. St. Olaf Care services has offered residential, nursing and home care since 1987. The organisation is based in the seaside town of Nairn on the Moray Firth. Nairn offers facilities that can be enjoyed by those residing at the Centre, their visitors and others who may wish to holiday in Nairn while a loved one enjoys a respite stay at the Centre. St. Olaf’s has always positioned itself at the forefront of care provision and the opening of the purpose built St. Olaf Manor will continue to extend the flexible approach to care it has championed.
The Centre is one of the first of its kind in Europe, designed to meet the specific care needs of the sufferers of degenerative diseases and their families, while offering five-star hotel accommodation and services. Victims of brain injury, Huntington’s disease and other neurological conditions such as multiple sclerosis, Parkinson’s disease, stroke, cerebral palsy and motor neurone disease can all be cared for in this groundbreaking facility, combining the latest techniques and equipment with specialist staff practising the most up to date training and principals in caring.
Therapies are available in the physiotherapy suite, multisensory room and craft and music area and clients can be offered complimentary therapies and aromatherapy as well. A spacious restaurant open to residents, visitors and the public offers a range of special menus and there are workshops, a cinema, a bar and a library. The St. Olaf partners are hoping to reach agreement with local hoteliers to provide accommodation at reasonable rates for family members wishing to accompany clients coming to the Centre for respite care and there is of course always the MS Society’s caravans at Nairn for families to enjoy.
While not funded by the MS Society or specifically for people with MS, like Holmhill of happy memory in Grantown-on-Spey was, St. Olaf’s offers an excellent opportunity for people to enjoy a holiday that offers both stimulation and relaxation in beautiful surroundings.
For further information or enquiries about care places, please contact: Carol Clark, Director of Nursing, telephone 01667 458881.
MS and the SLT
Speech and Language Therapists (SLT’s) are health care professionals who work with clients experiencing problems with speech, language and general communication. In addition we are closely involved in the assessment and management of swallow issues.
MS symptoms can vary depending on the size, site and activity of nerve fibre lesions at any given time. If the brainstem is involved there may be difficulties with swallow and speech. If there is cortical damage clients may undergo changes in behaviour and thinking which can affect communication.
Different types of nerve damage in MS can lead to variable swallow symptoms. Slowness and incoordination can make it hard to chew and move food back Sometimes people experience difficulties with thinking and may try to take unmanageable bites. Sensory deficits, e.g. loss of feeling or pain can affect swallow.
With severe MS a diminished ability to take air into the lungs and debility of the vocal folds can lead to an inefficient cough. Our cough clears food “that goes down the wrong way”. It is important to be aware of this because food entering the lungs can provoke pneumonia.
Some people with MS may have difficulty with speech due to the movement problems they experience. When muscles are weak and lack the precision, range and speed necessary for speech this condition is called
dysarthria. Because many parts of the brain can be affected in MS speech problems vary. People can experience problems with loudness and pitch. Speech can sound slurred and uncoordinated. The voice might sound hoarse or harsh.
SLT’s can help with these problems. We can be accessed by various routes. Much the simplest way is referral to the Service from your GP. If you have concerns about your swallow or your speech and language don’t sit and worry in silence. Speak to your GP and discuss a referral.
Speech and Language Therapist,
Community Adult Service,
Foresterhill Health Centre.
Prof. Linington’s Full House
The recent talk by Professor Chris Linington of Aberdeen was eagerly awaited and enthusiastically received by the 75 people who were able to attend. Lack of space and the need to have regard to safety meant the SRC was unable to accommodate more people and a cancellation list had to be started. There were so many people on the list that we have asked Prof. Linington if he would be able to schedule a second talk and he has agreed to come again to the SRC on Tuesday 9th September between 7 – 9 p.m. There are already 54 people on the list so if you’d like an opportunity to hear and question this highly respected researcher in MS telephone 01224 692777 to reserve your seat now. The cut off point is again 75 people.
For those people who can not manage to attend there will be an opportunity to view a video tape or listen to an audio tape of the talk. Just get in touch with the Centre.
Almost Eight Yards
You may remember last issue we started to raise a mile of copper for MS. A number of people have said that they’d be happy to participate and have been busily squirreling away their pennies to help us reach our target.
So far donations have totalled £42.10 ranging from 66p to £15.00 and you’ll be happy to know we’ve therefore raised 280 inches of pennies or 23 feet 5 inches. Not a great distance but “a journey of a thousand miles starts with but a single step”.
If you’d like a small but far from discreet bright orange cardboard money box to put beside your phone or your bedside table just to remind you of our fund raising effort please give us a call and we’ll get one sent on to you.
Yes, it’s too early to think of Christmas – or is it? You can help raise funds for your local MS Society Branch by ordering your cards, wrapping paper and a selection of small gifts from the MS Society Christmas Booklet. People who are members of the Society will be sent one automatically with their copy of MS Matters. For those of you who are not Society members but who would like to help with this painless method of fund raising please contact the Centre and we’ll send a copy on to you – or better still – why not join your local Branch?
Well Worth the Wait
It took a long time but has been well worth the wait. For at least a year the Stuart Resource had been looking for a Yoga Instructor and in March of this year Sheila Harper joined us. At first I didn’t know what to expect as I had never done Yoga before but I thought it would be worth a try.
The sessions start with gentle relaxation and breathing exercises. A breeze I thought. Then the real work starts. At first I thought I would not be able to do the exercises that Sheila was describing but by listening and following her instructions it was quite easy. The session ends with relaxation and just finishes the hour off nicely.
Over the past months that the Yoga Class has been taking place I have found the effects and benefits of great value in that I am more supple, I don’t get the same tightness and stiffness in my legs and back and when I do I can ease them off by the breathing and exercises that I have learned. Another benefit is if I am having problems sleeping these methods are also helpful. On the few occasions that I have missed the Friday sessions I actually feel the difference in my body and also in the way I feel in myself. I know this sounds a bit “airy fairy” but I feel this to be true – that if I feel stressed or I am having trouble coping on a “bad day” I use the breathing etc. and it does help. Even my husband says I am more “chilled and less stressed”. Weekends are not as much hard work as they used to be, coping with everyone at home and all the different goings on that a busy family life entails. Well worth it I hope you agree. Why not give it a try? Friday mornings, 10.30a m start, at The Stuart Resource Centre.
Calm and Happy and Well
Scientists have found that volunteers who meditated for a short time every week showed lower anxiety levels than those who did not. They also had higher antibody levels in their blood, suggesting they would be more able to fight infection.
In a different study research showed that the state of our relationships affected our physical health. Couples who argue and use negative behaviour had a weakened immune response and had higher levels of stress hormones – substances that can further reduce immunity.
Benefit Books Out
Over the next year everyone who receives a state benefit (e.g. Disability Living Allowance, Incapacity Benefit etc.) paid in cash through a “book”at the Post Office will get a letter telling them their money will in future be paid direct into a bank or building society account. However, if you prefer to receive your benefits in cash this will still be possible.
If you do not have a bank account you can open a Post Office Card Account. A plastic card and PIN number will be issued to each account holder. When withdrawing cash, the card is handed to the post office clerk and the personal PIN number entered into the key pad on the counter. It is not yet clear how the PIN key pad can be adapted for people with visual impairment or limited arm and hand movements, but trials using a key pad cover are currently ongoing. If you are unable to visit the post office you can arrange to nominate someone to collect money for you using a separate card and PIN number but you will no longer be able to select different people to collect money on your behalf on a “one off” basis if you are unwell.
Before the end of 2004 everyone in receipt of benefits will get a letter informing them of the situation. It is not necessary to do anything until you receive your personal letter.
Although many people would like the book system to continue it is much cheaper administratively for money to be paid direct into an account, it is safer in that no one can steal your book and cash it and it means you do not have to carry large sums of money on you thus lessening the likelihood of elderly or infirm people being “mugged” for their pensions and benefits.
Under a review of legislation ordered by the Government disabled people could be required to take a driving test before being allowed on the streets in motorised wheelchairs and may be subject to speed restrictions. The approximately 145,000 drivers of electric wheelchairs may also be required to take out third party insurance.
This is in response to concerns that the growing use of powered chairs and scooters may increase the risk of accidents from reckless driving and congestion on pavements.
The Disability Equipment Register
People may be interested in a very useful little booklet, the “Disability Equipment Register“, for the buying and selling of used disability equipment throughout the UK. Listings include items as varied as stair lifts and vehicles, and include some general adverts from traders, too.
The booklet has a registration cover charge of £10 for six months. It is published monthly and sent by post. Once registered, you can have between two and four free adverts per month to either buy or sell items.
Further information can be obtained from The Disability Register, 4 Chatterton Road, Yate, Bristol, BS37 4BJ. Telephone 01454 318 818 or fax 01354 883 870 or e-mail firstname.lastname@example.org The website is updated monthly and can be accessed at www.disabreg.dial.pipex.com
We have some new books at the Stuart Resource Centre,
“300 Tips for Making Life with Multiple Sclerosis easier” by Shelley Peterman Schwarz. It covers areas such as Personal Care, Shopping, Travel, Housecleaning, Laundry, Computers and Technology etc. etc. We have four copies of this book to borrow.
Gowring’s Mobility “Smooth Ride Guide – United Kingdom” is a travel planning handbook for people with disabilities. It gives very useful information on self catering, hotel and guesthouse accommodation, airports, ferries and train operators. As we have only one copy of the book, it is for reference only. Pop in and browse through it at your leisure.
Many people with MS don’t tolerate hot weather well and therefore choose to go abroad later in the year when temperatures are not so high.
If you’re thinking of visiting the Costa del Sol we’ve just learned of a company “Mobility Abroad” that offer a wide range of services including wheelchair, scooter, and equipment hire. For the U.K. office, contact John Greenan, Mobility Abroad, Tel. 01375 377246, Fax 01375 405861 or check out their website on www.mobilityabroad.com