PMR-GCA NEWS No 10
THE NEWSLETTER OF PMR-GCA SUPPORT EAST ANGLIA
A goodly crowd attended our 2nd AGM in April here in Needham Market, with people arriving before our doors were even opened at 10-30 in anticipation of meeting others to chat, compare notes about polymyalgia and giant cell arteritis, and enjoy refreshments before the more formal part of the proceedings. Our committee feels that this informal socialising time is very much needed and a most important feature of the meetings.
The Annual General Meeting 2010
The AGM went smoothly with the committee re-elected and no change in officers. In her Annual Report as Chairman, Jennifer told of the successful Launch of PMR-GCA UK which took place at the Wellcome Centre in London on 12th March this year. The UK website was launched on the same day, and you will find details of this excellent site at Other national information can be sought via Secretary Jayne Sibley tel. 02476 361 956 email
Hazel’s Talk on Relaxation
Following on from the AGM, Hazel Bradshaw was invited as speaker to offer advice on relaxation techniques which might help us whilst enduring the stiffness and pain which so often accompanies PMR. We were all able to practise some of the practical skills Hazel suggested, and we started off by concentrating on our breathing technique, from shallow breathing to deeper breathing which involves the diaphragm, to improve the blood’s oxygen supply.
Using music Hazel encouraged us to experience how one can gradually acquire techniques to take us away from situations and the stresses and strains we experience with Jennifer and Hazel (right) discuss PMR
polymyalgia. She emphasised the need to make ourselves comfortable, keep distractions to a minimum, and if possible to listen with eyes closed.
Supported by funding from
Whilst listening to the calming music Hazel took us on an imaginary journey through a beautiful meadow, using our senses to imagine what we might see and hear and smell. At the same time she talked us through some simple exercises which helped us to relax, like rolling our shoulders and breathing deeply.
The beauty of all the techniques which Hazel suggestedis that they can be
practised by us at home, in a comfortable chair, with our own choice of gentle music. Whilst listening, we can control our breathing, gently exercise our muscles, and conjure up our own calming imaginary scenes.
Counselling support for PMR & GCA
Recently Jennifer has attended an accredited course to enhance her counselling skills this year. She has received her certificate in this area and she hopes
to pursue a further course in the Autumn. This means that we at PMR-GCA Support East Anglia can offer an even better service for people who seek support andhelp when they contact our telephone helpline01449 720 545.
Arthritis Research UK
You may be aware that ARC has recently had a change of title to Arthritis Research UK,dropping the word ‘campaign’. Under this new banner all of their excellent booklets are being revised, amended and updated, and I am very pleased to tell you that a new booklet in the series on Giant Cell Arteritis will soon be available. As a patient representative invited by Arthritis Research UK, Jennifer has suggested amendments and contributed comments to the preparatory text for the GCA booklet and also for the update of the PMR booklet. Do look out for both the new versions towards the end of the year.
News from Self Help Contacts
John Ladlow fromDevon has writtenenthusiasticallyabout his mobility scootering experienceswhich I’m sure many will find interesting and useful, particularly if you have mobility difficulties. To read ‘Scootering’, please
turn to p.4
John and scooter overlooking Padstow Harbour
Gill Green from Peterborough has spoken with several new contacts in that
area,and she hopes to hold a meeting for them in Peterboroughin the autumn. Perhaps any other interested readers living near Peterborough might like to get in touch with Gill and meet with others in Peterborough. Her details are listed onp.5
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Evelyn Cooper of Lowestoft is a recent addition to the Self HelpContacts List. Evelyn is happy to take calls in the vicinity of Lowestoft on tel. 01502 583 624.
Support Groups details and all our Self Help Contacts can be found on p.5.
New Self Help Groups or Contact People are always needed, and if your PMR is a good deal better you might wish to help others in these ways. You would need to consider your health, and have some time to spare. A positive attitude and good listening skills are essential, and of course you would need a telephone. Computer access and skills are invaluable too. A surprising amount of interest can often be stirred up by submitting a small piece about PMR and GCA in a local magazine, and may be a lifeline for someone else with our condition in your area.
Please contact us if you feel this is a contribution you could make.
Our Autumn Meeting
The Autumn Meeting will take place on Wednesday 20th October here in Needham Market with the usual time reserved at the start (10-30) for refreshments and the important opportunity of sharing the ups and downs of PMR or GCA symptoms and medications. At 11-0 or thereabouts, Ruth Slack will speak about her role as Senior Rheumatology Nurse at the WestSuffolkHospital, Bury St Edmunds. Ruth has been very interested in the progress of our PMR-GCA support service, and very supportive since our formation in 2004.
Accompanying this newsletter on p.6 you will find a plan to show the where- abouts of the Needham Market Community Centre. Needham is an easy place to find, a mile off the A14, with rail links from London, Norwich, CambridgePeterborough. The station is within easy walking distance to the meeting.
And finally, if you have received afree PMR-GCA News 10, you will need
to senda £3* contribution to receive future copies which will serve asyour
receipt. At present copies sent by post cost almost £1 each! This one-off
contribution entitles you to membership of PMR-GCA Support East Anglia.
*If you have already made a £3 contribution, many thanks. No further
payment is expected, although as our costs continue to rise we may have to
reconsider our policy in the future.
With all best wishes, Jennifer and team.
Contributions by cheque please, made payable to: ‘PMR Support Group’.
Address: The Treasurer, PMR-GCA Support E. Anglia, 21, Chalkeith Rd.Needham Market, Suffolk. IP6 8HA
8-8-10
PMR-GCA Support East Anglia isrun solely by volunteers. We offer both support through listening andinformation concerning the two conditions.We arenot a professional medical organisation and aretherefore unable to offer specific medical advice. Information given over the telephone through the helpline or by email is for informational purposes only. The content is not intended as a substitute for professional medical advice, diagnosis, or treatment.
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SCOOTERING
John Ladlow writes:
I have at times had extreme difficulties in walking due to PMR, and although I have usually been able to do the essential walking, I could no longer walk for pleasure. I had for some time entertained the idea of a mobility scooter, and in Tavistock near where I live there is a charity called Tavistock Area Support Services (TASS) which runs various support groups and also hires out free small mobility scooters and chairs for local people to use about town. I tried one out one morning, whizzed around the town's parks and realised what I was missing. I therefore, decided to invest in one but somewhat larger in order to go for 'walks' in the countryside. I have not regretted this.
I have always been a keen walker and mountain biker, there are so many places in this area suited for these activities, indeed, that was the main reason that I chose to live in Tavistock when I retired 12 years a go. But things change, and I am unable to do the things that I so loved doing. The thing that I miss most is walking and biking off road. OK I can get around the shops, and drive anywhere, but walking the moors, biking on the trails I sorely miss.
I wondered about a mobility scooter, and if I would be able to do some of these things. Research on the ‘net revealed that yes, there are scooters that will go anywhere, but they are very expensive. However, there are other class 3 scooters suitable for the road and pavements which are much cheaper, and some capable of going over rougher ground because they have independent suspension. Having decided that I would benefit from getting a scooter, apart from the expense, there is a psychological barrier to overcome; that of actually riding about on a mobility scooter.
However, I first went to visit Kevin at TASS. He told me where I could purchase a class 3 scooter but suggested that I try out one of the class 1 scooters that are available to anyone for free to use in Tavistock. So I took one of these small scooters out and went through the town and across to the Meadows, so easy to use and the freedom of going by the river which I had not done for years convinced me to get something of my own.
I went to Launceston Mobility who were extremely helpful and I tried various models out. The problem with the larger scooters is getting them into a car, so in my case I needed to get special ramps and have a lighter seat fitted.
The first weekend eager to try out my new toy I went to Okehampton and did about 12 miles on the Granite Way… marvellous. Then I tried Morwellham where I have done the nature reserve trails many times and on the ‘Rope Walk’ saw a very rare flower (Purple Toothwort) which I have never seen before and would not have seen but for having a scooter.
Recently we had a short break in Cornwall at Padstow. There I did the Camel Trail, one of the most beautiful trails in England. I did this on my scooter three times - about 40 miles in all over three days and enjoyed every minute of it. So I have in a short time discovered lots of ways to enjoy the countryside again, and I hope that this article will encourage other people to do the same.
John Ladlow June 2010
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PMR-GCAUK Support Groups
PMR-GCA Support E. Anglia:
Contact Jennifer Nott 01449 720 545,
or John Parsell 01449 672 592
email:
Southend/Essex PMR/GCA Support Group.
Contact Hannah Padbury, 01702 587 436
North East Region Support Group
Area 1. Pam Hildreth 01287 623 334
Area 2. Mavis Smith 01914 111 138
Wales PMR-GCA Support
Contact Glyn Hughes 01633 483 186
Coventry& Warwickshire Support Group
Contact Jayne Sibley02476 361 956
e-mail:
South West Support Group
Contact Wendy Morrison01823 663 911
e-mail:
PMR-GCAScotland:Scottish Charity No: SC037780
Contact Jean Miller01382 778 596
or Alison Jeffrey01334 870 674
Self-help Groups:
Lowestoft area: Evelyn Coopertel. 01502 583 624
Colchester area: Jenny Palmer tel. 01206 824 373
Devon & Cornwall: John Ladlow
Bucks: Mary Shepherd
01494 432 248
E. Sussex/Kent: Jean
01403 732 981
Peterborough:Gillian Green 01733 700 110
Northants: Val Jones 01327 811 692
For details of PMR/GCA support in areas not listed above, please contact The Secretary, PMR-GCA UK Tel. 02476 361 956 email:
SupportGroups Jul 2010 5