Newsletter
December 2003 Newsletter — Extracts
Opening Words
A winter’s sunset in West Norfolk.
It’s good to know that osteoporosis is receiving the attention it deserves nationally with many articles in the media, some very hopeful regarding the new drug Forteo (or Forsteo), mentioned in our previous newsletter.
Locally, we are continuing to raise the profile of the group by being in the public eye. Members of the public are continuing to take notice of us. We are now running a minibus bringing members in from Hunstanton, Snettisham and Dersingham. Those of you in these areas who wish to attend the monthly meeting should please make themselves known to us (contact Pat Reilly on 01485 572271).
We still need more committee members. It is your group and the committee should represent all members, as it is here to serve your needs. If you yourself are unable to join the committee, maybe you know a friend or relation whom you think might like to contribute to the group’s future. Why not put them in touch with me?
Fundraising is going well, and we are fairly prosperous. But we need to build up our funds further if our aims are to be met vis-à-vis a DEXA scanner and nursing support.
Finally, that strangely happy and sad time of Christmas is approaching. First we have to endure the morning mists and dark early evenings; still — only 16 weeks to Spring. A Happy Christmas and a contented New Year to you all.
From the Chairman, John Fludgate
“What does the future hold for osteoporosis?” — An Open Meeting
18 September 2003
This special meeting at the Duke’s Head Hotel was very well attended and attracted both people who knew quite a bit about osteoporosis and newcomers to the subject.
Our aim was not only to inform but also to attract new members to join the group and the Committee. Gradually people are coming forward, and we hope to give you more information on that in our next newsletter.
Our main speaker was Dr Philip Heyburn, Consultant Endocrinologist from the Norfolk & Norwich University Hospital. He spoke of his work, the treatments and possible new developments for treating osteoporosis, such as the new teriparatide (Forsteo, was called Forteo in America), which is now becoming available in the UK. This is the first treatment to strengthen bone rather than suppressing the breakdown of bone. This will only be used for extreme and difficult cases, such as those people who do not respond or are not able to take the more usual treatments.
The Active for Life Group gave an exercise demonstration, and as always, this was very popular. This is a group that has proved that regular exercise, structured specifically for those at risk of osteoporosis, together with dietary and pharmaceutical support, does contribute toward increasing bone density and reducing fracture risk.
The third speaker was Janet Strang, the National Osteoporosis Society Groups Manager. She explained how the NOS can help — with information, booklets, lobbying government, etcetera; and how local people can help — putting pressure on the local health providers and planners to increase the level of service.
The group felt this was a very successful event, just what we needed to boost our motivation.
NOS Book Review
The National Osteoporosis Society produces a number of booklets. When you become a member, and each time you renew your membership, you are allowed two of these free. The NOS has produced two new booklets in the last few months, and we thought it might be helpful to review them. The Secretary is particularly interested in Hormone Replacement Therapy (HRT) so she is looking at that one, while Ellen knows all about living with osteoporosis, so she reviews that booklet.
Hormone Replacement Therapy
Recent studies have provided more information on Hormone Replacement Therapy, and particularly about its long-term effects. HRT continues to provide very effective treatment for menopausal symptoms, but it is no longer considered that all healthy women should use it as a treatment for osteoporosis.
The NOS booklet gives you the facts about HRT so that you can make an informed choice about whether HRT could be the right treatment for you. The menopause and osteoporosis are explained in detail, showing the links between the two, then an explanation is given as to who should consider taking HRT and why it is unsuitable for some women.
The risks and benefits are discussed in detail, and there is a chapter addressing frequently asked questions which was the most important for the Secretary. She has been concerned about how long to take HRT.
This information confirmed that the therapeutic benefits of HRT on bone are only achieved while you are taking it. Studies have shown that when oestrogen is discontinued, there may be some extended benefit of three to five years but it is acknowledged that short-term use cannot provide long-term benefit. In other words, using HRT when you are in your 50s, for a five-year period, will not provide long-term benefit and reduce your risk of broken bones when you are over 70. It cannot preserve bone density lifelong.
The Secretary can recommend you this booklet if, as in her case, your doctor is suggesting that you change to another form of treatment following several years taking HRT. It would also be very helpful to someone who is approaching the menopause and who has read conflicting reports in the press. This sets out the facts very clearly.
Living with Osteoporosis — Coping after broken bones
We were very excited when we knew of the publication of this booklet and we’re not disappointed. Written by Osteoporosis Nurse Glenis Edwards, with some input from sufferers, it aims to help people who have had osteoporotic fractures to understand the possible causes of pain, different types of pain and how better to cope.
On the first page is a very eloquent contribution from Jo Lye, a sufferer and member of NOS. She tells of her first fracture at the age of 56, four further fractures, the impact this all had on her life and how she coped.
Fractures, pain and the cause of it are next. How many of you, having suffered a spinal fracture, experienced pain around the ribs? It is all explained. Drug treatments, physiotherapy and complementary therapies such as acupuncture and reflexology are all covered.
The next section comprises eight pages of useful non-medical tips sent in by NOS members. Clothing can be a nightmare because of loss of height, curvature of the spine and a bulging tummy that seems to accompany spinal fractures. To make your bed more comfortable try placing a folded duvet under the bottom sheet. Chairs and sitting are another huge problem (as many of you will know) all this and much more is there. Finally there is a list of useful addresses.
We hope we’ve convinced you of our enthusiasm for the booklet. For Ellen, this is the most comprehensive publication for sufferers to date, and an excellent buy. It is a book that could help sufferers feel less isolated.
We can send you a copy of either book at the cost of £3.00 or £2.40 if you are a NOS member. Please order from our Secretary, Edith Finbow on 01553 773309.
Hip Protectors
There is yet more research on hip protectors. An American study has shown that 90% of participants living in a US nursing home were still wearing a ‘soft’ type a year after being given the pants. A study presented at the ninth Bath Conference (NOS), which used a ‘hard shell’ pair of the underwear, found less than a third of participants, who were all living at home, were wearing them a year later.
The hard shell pants incorporate a rigid piece of plastic over the hips to protect them should the wearer fall. The ‘soft’ underwear include foam pads and manufacturers say this soft padding acts like ‘airbags for the hips’ and make the pants more comfortable. Barbara Blacklock has more detailed information on these if anybody would like it. Telephone 01553 672527.
Recent Past Events We’ve Enjoyed…
Life after Deaf, a talk by Margaret Tate | August 2004
Margaret Tate has been deaf since having a bad bout of measles when she was five years old. At that time it was not possible to be fitted with a hearing aid until the age of 16, so she had to learn other methods to cope, such as lip reading and sign language.
She told members it was important to do something as soon as they think they are not hearing so well rather than leaving it until they can actually hear very little. Check with friends to see if they think you are not hearing properly. Then go to your GP who will probably send you to either the ENT (Ear, Nose and Throat) Department or Audiology at the hospital. It is easier to cope with a hearing aid when you have some hearing of your own.
She then went on to explain the services provided by the West Norfolk Deaf Association on Railway Road, and told us about all the equipment which is available through Social Services. This was a very helpful talk, especially for those of us who are beginning to have problems. Margaret donated her fee of £25 to the Deaf Association.
The History of Crosswords, by Eddie Lyon | September 2003
5 down: she first belonged to the Bishop, later the sovereign, and according to the fact of his ownership she is still named today (town, 5, 4).
Eddie has been compiling crosswords for publication and for charity for 35 years. He has produced 12,000 puzzles in that time and still compiles about 700 a year.
Word puzzles, which were the forerunners of crosswords, were very popular with the ancient Greeks in the Second Century AD. Similar word puzzles were known in this country as early as 1614 with the first printed examples here in 1873. The Times and Telegraph crosswords, that some people find so addictive, started in 1930 and the first Times crossword was set by Martin Bell’s father.
A fascinating evening ended with the group trying to solve some of the clues and puzzles Eddie had set.
Members’ Evenings
You will notice that the April meeting will be a Members’ Evening. We hope to hold these quarterly. These free evenings give you, the members of the group, a chance to do what you would like to do. John has recently circulated a questionnaire to those present at the meeting and several suggestions were made for the future, for example small quizzes, bingo, and outings.
These open evenings will allow us time and opportunity to discuss the future programme in more detail. It also gives all those present a chance to ask questions about osteoporosis and the future plans and goals of the group.
We feel that it is very important for you to have your say!
