Information

Orpington Support Group

Contact: Penny

Tel: 01689 869570

Contact this group

pmrgca.orpington@gmail.com

Orpington Support Group meet on the second Tuesday of each month from 10am - 12 noon in the hall at St Paul's Church, Crofton Road. Tea and coffee is available.

Support groups are a really great opportunity to meet, with other and share information.

Location St Paul's Church, Crofton Road, Orpington, Kent BR6 8JE There is disabled access to the main church and hall.

Train - Nearest station is Orpington mainline station (trains from Charing Cross, London Bridge and Victoria or from Ashford, Sevenoaks and Tunbridge Wells).

Buses - If arriving by train at Orpington exit the station via Crofton (Taxi rank) entrance and cross the road to the bus stop facing up hill. Take a 61, 353, 654, R2 or R3 to the bus stop at Oakwood Road/St Paul's Church.

Parking - There is a church car park, if this is full there is ample street parking around the church. Please avoid block any driveway in Oakwood Road or elsewhere.

£4 entry - includes refreshments and contribution to hall hire.

Win up to £25,000 and support local groups in Kent - Hive Lotto gives us 50p for each £1 ticket you buy through our link  And when you win £25,000 Hive Lotto will give £25,000 for the benefit of those with PMR and GCA in Kent!   WOW!
Greater London What's On

High Wycombe Meet Up - December 2018

Wed 19 Dec 2018
Teenage Room, Wycombe Library, Eden Centre, 5 Eden Place, High Wycombe, Bucks, HP11 2DH

Orpington Speaker mtg - January 2019

Tue 8 Jan 2019
St Paul's Church, Crofton Road, Orpington, Kent BR6 8JE

Harrow / Pinner - January 2019

Thu 17 Jan 2019
United Services Club, 4 Leighton Ave, Pinner, HA5 3BW

High Wycombe Meet Up - January 2019

Thu 17 Jan 2019
Teenage Room (1st floor), Wycombe Library, Eden Centre, 5 Eden Place, High Wycombe, Bucks, HP11 2DH

London Speaker Mtg - January 2019

Mon 21 Jan 2019
Artizan Street Library, 2nd Floor Room, 1 Artizan Street, London, E1 7AF

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Group News

Orpington Support Group

Orpington Meeting News

Tuesday 8 January
Consultant Rheumatologist and Registrar at Orpington Hospital, Amanda Mootoo, will be joining us at 10am on Tuesday 8 January 2019 to answer members questions about the conditions and treatments. New members are welcome to join us. Please see how to book in below.
 
Planning to come along?
If you have not attended a meeting before please email: penelope@pmrgca.org.uk or call 01689 869570 (you can leave a message on the answerphone and we will return your call) to book a place.
If you are a member of the Orpington Support Group you will have received an email about this meeting. Please reply to pmrgca.orpington@gmail.com
 
November 2018 Meeting
Our November meeting was the last one of 2018 and we were pleased to welcome two new members to the group.
 
We spent time sharing our journeys through polymyalgia rheumatica and giant cell arteritis. We discussed various ways and times of the day we took prednisolone. One new member had been reading Kate Gilbert's book which can be bought from the PMRGCAuk website via this link  Having found that the steroid effects did not last the day so feeling achy by evening she tried splitting the dose as Kate had done. This works for her.
 
Two members have recently been diagnosed with lymphoedema so were able to share information on this with the group.
 
Margaret had been successful in raising funds for Kent groups through Waitrose green tokens scheme and presented a cheque to the group for £285. Waitrose in Biggin Hill have indicated that they are keen to help us again next year. We are very grateful.
 
Irene, who was unable to be with us today, has made a similar request to Waitrose in Green Street Green but someone had already requested for the Orpington Support Group to be entered into the scheme so we await news eagerly.
 
Adriana brought a selection of Christmas decorations she had knitted. She had already sold to the value of £39. This money will be donated directly to the national charity Polymyalgia Rheumatica and Giant Cell Arteritis UK.
 
Penny reminded the group that there was no meeting in December. The next meeting will be on Tuesday 8 January 2019 at the new time of 10am.
 
After the meeting 6 members enjoyed lunch at The Black Horse in Locksbottom. It was suggested that we should do this again at Easter! Watch this space.
 
October 2018 Meeting
We had an excellent meeting on 9 October with a presentation from Tom about pain control through pressure points. Thank you very much Tom.
 
Tom brought a video presentation and included information from the book he has used effectively called "The Trigger Point Therapy Workbook" by Clair Davies and Amber Davies. The group has a copy of this book which will be on the information table at meetings. I have searched on Google for the book and there are links to copies for sale here if you want to get your own copy.
 
September 2018 Meeting
In September the group learned about type 2 diabetes, which can be caused by prolonged use of steroids. Richard Lane, OBE, Immediate Past President of DiabetesUK, spoke about the need to make sure that feet are part of the annual NHS check-up with your GP as they can be an early indicator of diabetes. He also pointed out the importance of regular exercise. The group presented a cheque to Richard who will be requesting that it is put towards a research project closely connected with PMR and GCA.

Forthcoming Meetings 2019

Tuesday 8 January

Tuesday 12 February - Ruth Jones, Nordic Walking expert will be talking to us about the benefits of walking as a way of exercise.

Latest News from Orpington Support Group

Orpington Fundraising Coffee Morning

Orpington Support Goup raised £338 on 12 June at our fundraising morning.

Thank you to everyone who helped and all those who came to support us. It wasn't as hot as last year so we stayed inside and had a very enjoyable morning. The monies raised will be given to the 10th Anniversary Appeal.

Orpington Fundraising Morning

Future Meetings

10 July - We will be watching a recording made at the Newcastle Rheuma Research Roadshow of a talk 'Investigating Giant Cells' by Dr Gary Reynolds. Dr Reynolds carries out his research at the Institute of Cellular Medicine in Newcastle University.
There will be no meeting in August
11 September - Richard Lane OBE, Ambassador and Immediate Past President of Diabetes UK. A opportunity to ask questions about the prevention of diabetes and discuss the risks of getting diabetes as a side-effect of taking steroids
13 November - We are awaiting confirmation and hope to have a consultant rheumatologist to speak to us. Please check back here as information will be posted as soon as the date is confirmed.

Past Meetings
In March the group watched a PMRGCAuk film of Angela Edward's PMR journey

You can watch all the PMRGCAuk videos online at our Vimeo channel http://www.pmrgca.co.uk/content/video-

At our April meeting we shared the experiences we have had on our journey to being diagnosed, advice given by our GPs and consultants and coping with day to day living.

At Orpington group we welcome all with PMR and/or GCA and those who support them. We often have family members and friends who come in this role. Margaret, who is featured in the latest (Spring 2018) edition of NewsWire is a member of the group.

 

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