Thursday, 24 December 2009

Yes you've guessed it! Closed again 24th December!

Apologies for yet another day of cancellations! Although the main roads are clear the side roads and pavements are very treacherous! Today has been the worst on foot so far!

We hope (weather pending!) to be open for business as usual on 4th December.

I hope you have a wonderful Christmas and New Year!

Pip

Wednesday, 23 December 2009

Centre Closed Again!! - Wednesday 23rd December 2009

Our apologies but the conditions have not changed since yesterday, the Centre will be closed all day today.

We hope to be open as planned on Christmas Eve but will review the situation in the morning. Fingers crossed for a bit thaw between now and then!

Once again please accept our apologies.

Pip

Tuesday, 22 December 2009

Centre Closed Tuesday 22nd December

The Centre will be closed all day and evening of Tuesday 22nd December due to the bad weather conditions.

Apologies for any inconvenience caused.

Best wishes

Pippa

Thursday, 17 December 2009

How to Campaign to access FES


Published on the MS Society website.


Functional Electrical Stimulation (FES) in a non-invasive device that can help some people with MS to walk. The MS Society's brand new campaigns guide will help you to access FES, what to do if you are refused NHS funding for FES and how to get loud!

http://www.mssociety.org.uk/get_involved/policy_campaigns/campaigns_network/campaigning_guides/fes_guide.html

BMSTC offers a FES clinic here at the Centre, contact ruth@bmstc.org if you would like to find out more information.

Wednesday, 16 December 2009

New! LDN Aware Website


This website is your worldwide gateway to Low Dose Naltrexone information, resources and events. LDN Aware is a volunteer group devoted entirely to spreading knowledge and raising public awareness about LDN as a treatment for auto-immune disease, cancer and HIV/AIDS.

http://www.ldnaware.org/

MS & Vitamin D

Link to Radio 4 Woman's Hour Programme:


The Teenager whose mother inspired him to campaign on multiple sclerosis
Ryan McLaughlin is just 14 and his mother Kirsten has multiple sclerosis. A link has been suggested between the disease and Vitamin D deficiency. Ryan took up the cause, calling on the Scottish government to raise awareness on the issue. Now, because of Ryan’s efforts, all pregnant women in the country are to be told about the importance of taking vitamin D supplements. Jenni speaks to Ryan McLaughlin, his mother Kirsten, and to discuss the links between MS and vitamin D, George Ebers, Professor of Clinical Neurology and the University of Oxford.



http://www.bbc.co.uk/radio4/womanshour/03/2009_49_fri.shtml

CCSVI - Latest Broadcast on CTV News

CTV- new research at University of British Columbia announced:

watch.ctv.ca

CCSVI - Fact or Fiction

Taken from the CCSVI Facebook group published on the 14th December:



There are many, many factual errors being published in the press and bandied about by MS societies, doctors and even on well-intentioned petitions. It's important to separate fact from fiction. Here are a few things that are essential to understand-

FICTION 1- "The Liberation Procedure is a cure for MS and MS is not autoimmune"-

FACT-Dr. Zamboni has never used the word "cure." MS is an ongoing assault on brain tissue due to reflux, and some of the damage done to the brain may be permanent. Just as people have variable recoveries due to stroke, recovery from venous congestion and reflux will vary. Dr. Zamboni has never said MS is "not autoimmune." Dr. Zamboni believes that CCSVI may be the cause of the MS process. He says that the immune system is obviously involved...but he believes the immune reaction is secondary to the venous congestion.

FICTION 2- "Venous procedures are dangerous. Several people have died from the Liberation procedure!"

FACT- The only complications from the Liberation procedure (venous angioplasty and ballooning) have been headache and bleeding from the small incision at the groin.

There have been complications from venous stenting, including nerve damage (several cases) and stent migration (one case), but NO ONE has died from this procedure. A friend of many of us had a hemorrhagic stroke after having a stent procedure, but her death was not related to the venous intervention....it happened on the arterial side. Her family, her doctors and the hospital that treated her after the stroke maintain that her tragic death was not due to her stent intervention.

FICTION 3- "Venous congestion is caused by MS"

FACT- We know how venous congestion works, because it happens in other parts of the body. Chronic venous insufficiency in the legs begins with venous stenosis and reflux, leading to pain, swelling, and venous ulcers. Chronic venous congestion of the liver (Budd Chiari disease) begins as venous stenosis and leads to liver damage. When veins are blocked and blood cannot return to the heart, damage to the surrounding tissue occurs, not the other way around.

FICTION 4- "Dr. Zamboni's studies are not scientific. They are not "blinded."

FACT- Dr. Zamboni's first study was blinded. He tested hundreds of normal controls, other neurological diseases, and MS patients, and the doppler technicians did not know who was whom. After the patient results were "unblinded"- Dr. Zamboni found CCSVI only in MS patients. Dr. Zamboni only gave the Liberation procedure to 65 MS patients....because THEY WERE THE ONLY ONES WITH VENOUS STENOSIS. Why give normal controls a procedure they do not need? Why "pretend" to give people with malformed and closed veins a procedure that they do need. The placebo argument makes no sense....MS patients stayed relapse and progression free (as verified on MRI) as long as their veins remained open and unstenosied. Remaining relapse and progression free is not placebo affect.

http://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/ccsvi-fact-or-fiction/205971757210

MS sufferer walks after stem cell treatment

From the MS Trust Website:

"An Australian man who was confined to a wheelchair by multiple sclerosis has made a remarkable recovery after receiving a groundbreaking stem cell treatment.


Ben Leahy, 20, was diagnosed with the disease in 2008 and lost the ability to stand within a few months.

However, a new procedure to combat the disease has helped him regain his health and he is now walking again."


http://www.mstrust.org.uk/news/recentstories/article.jsp?id=3400

Tuesday, 15 December 2009

Christmas Card from BMSTC!

Happy Christmas to one and all, and best wishes for a peaceful and happy New Year!

Click on the link to retrieve your card.

http://www.jacquielawson.com/viewcard.asp?code=2003938168391&source=jl999

MS and Swine Flu - Latest Information

Latest information on MS and Swine Flu - published on the MS Trust website on the 14th December 2009.

Wednesday, 9 December 2009

Can you help us with a comment please?

Each year we produce various publications and fundraising applications to promote the work of the Centre. It comes over extremely well if we can include comments from our service users about how you benefit from the Centre. E.g. in our Annual Report http://www.bmstc.org/About-Us/Annual-Report.aspx

If you have a spare moment, I wonder if you could email me pippa@bmstc.org with a comment about a particular therapy, social group or just a general comment about how you benefit from the centre. We keep comments anonymous, but they do really help to get the message across to people outside of our organisation about what the Centre provides.
If you prefer, you can jot something down and hand in at reception or post in the Suggestions Box in the reception area.
Thanks in advance for your help! Pip :0)x

Remap - Custom Made Equipment for People with Disabilities

Remap is a very special charity, working through a nationwide network of dedicated volunteers. These inspiring people use their ingenuity and skills to help people with disabilities to achieve much-desired independence in some aspect of their lives, or to enjoy leisure opportunities previously closed to them.

See their website at www.remap.org.uk

Glass Jewellery for Sale - Friday 18th December

BMSTC have invited along to the annual Christmas Party on 18th December 2009 Nancy Boyd who is a member of the centre and will be showing and selling her Glass Jewellery.

All the glass jewellery is fused and original work using dichroic and bullseye glass. There will be pendants, rings, earrings, cufflinks, brooches and bracelets. Also on sale will be handmade glass dishes and coasters.

From the sale Nancy has agreed to donate 15% to the centre. She has recently donated £45 from a party she held at home last month. If any member wishes to have a party at home Nancy will be happy to do this. She also does workshops from home and these cost £25 for two hours -
3 items of jewellery can be made. Also tokens can be bought for £25 which make wonderful Christmas or Birthday presents for someone who would like to do a workshop.

Nancy can be contacted on 0118 9674272 or 07906930266 or email nancyboyd1@yahoo.co.uk

Monday, 7 December 2009

LDN Update

Well, well, well, what a week it has been. The petitions are in, the UK one was delivered by Dr.Chris to 10 Downing Street on Tuesday the 1st of December. It had 13026 signatures in the end and hopefully will trigger some government action. The Scottish petition had finished around the same time, but Scotland has a different system. The petitioner, Bob Thomson from LDNNow Scotland, had been invited to give a 3 minute presentation on LDN. Then he and two fellow campaigners were questioned about LDN, its effectiveness and availability. The petition and petitioners were very well received by the petitions committee and the hope is high, that the clever questions that were being asked will bring some fruitful furtherance of the LDN cause.

LDN (low dose naltrexone) is such a big light in the miserable life of many forgotten and shoved aside patients with autoimmune diseases. Something has to happen

  • to make people more aware of this
  • to it being offered as a first and safe line of treatment

  • to make it easy for (sometimes weak and feeble) patients to get hold of this cheap medication, that could change their life, their outlook, their social surrounds.

Find out about the outcome of these petitions on http://www.LDNNow.com, read the articles, watch the videos and most of all, keep helping with spreading the word about LDN.


Thank you very much


Yours sincerely


Silvia Lane

Wings on Wheels


You can tell it's nearly Christmas as we're already thinking about summer holidays!!!


Recommended by one of our members - Holidays for people with special needs and the less mobile, their carers, friends and relatives:

Wokingham Borough Council Day Opportunities Consultation

Invitation to Consultation:
"Wokingham Borough Council is currently working in partnership with people with disabilities and/or long term conditions and their carers to look at the way in which day opportunities will be made available in the future. Self-Directed Support will be a major influence on how services developing the future.

A steering group has been formed to carry out the consultation and put forward options for future services to the Council Executive in April 2010.

Current services are a mixture of traditional day services provided by the Council, those commissioned from Voluntary Sector Providers and other Community Services which people access through their own initiative. There has been some limited development and usage of mainstream universal services such as Leisure Centre facilities.

I am writing to invite you/your organisation to attend and event to contribute to the consultation.

The event will be held in the David Hicks Room, Wokingham Borough Council, Civic Offices, Shute End, Wokingham, RG40 1BN on Friday 18th December 1.30 - 4.30 pm. If you would like to attend please contact the Day Opportunities Steering Group on 0118 974 6000."

Thursday, 3 December 2009

BMSTC Christmas Closing and Opening Dates:

The Centre will be closed from 1.00 p.m on Christmas Eve and re-open in the New Year at 9.00 am on Monday 4th January.

Please do double check your appointment dates with your therapist!

There will be limited Oxygen Therapy available over the week that the Centre is closed. Please contact reception on 0118 901 6000 for further details or to make a booking.
Best wishes for a very Happy Christmas and a Peaceful 2010 from everyone at the Centre xxx

MS Society Christmas E-Card

Support the MS Society by using their Christmas E-Card Scheme!

http://beatms.mssociety.org.uk/NetCommunity/Page.aspx?pid=1071

Tuesday, 1 December 2009

Christmas Fayre Success!

The Members Fundraising Link Group should be very proud of themselves for organising such a terrific Christmas Fayre this year raising a huge £1,669!

The Fayre was very well attended and our Patron Martin Salter MP was delighted to come and officially open the event. A huge amount of time, effort and energy goes into putting on this event. Our thanks go to everyone who organised, helped or attended the Fayre.


Please see the recent article in the Chronicle Newspaper: