Meeting Report – Saturday 7th September 2019  

See the full Report on Our meeting and Listen to our Guest speaker here –

Our Meeting was held at Leicester Racecourse, thanks to the generous support and community spirit of Rob Rob Bracken, CEO of Leicester Racecourse, and the hard work of Yvonne Holyland head of their hospitality department – Thank you from all of our members

Introduction

Where we clarified some guiding principles of the group and our meetings 

Confidentiality 

As a support group, we encourage all to speak openly about what issues that they face, but as such we ask everyone to respect everyone’s privacy and keep confidential any specific personal matters that are supplied during our meetings 

We are not doctors  

We are not medically trained or qualified, so we will never seek to advise on treatments or medical matters. Whatever advice or personal experiences are shared, everyone should always consult with their own medical and healthcare experts for the best medical care and advice. 

We are not a charity 

We are not a registered charity, we handle no money, we have no money. We are just people helping people.  Where we require money to fund leaflets or posters, we approach local companies for them to buy on our behalf. 

Positive Only 

We are a support group, with the emphasis being upon support, so we encourage everyone to seek the positive in what we discuss, in our members situations and our overall attitude to our mutual challenges. Let us always try to find solutions rather than be dragged down by the problems, and let us always give encouragement and hope to each other. 

Tolerance & Friendship  

The group is for everyone, and we can all seek different things from belonging to this group, but at the very least I hope we will all find some degree of friendship and comfort from meeting and knowing our fellow members.  Let us all be tolerant of differences and respect that balance disorders come in many flavours and affect any person in any walk of life and at any age – so we of all groups, should acknowledge and celebrate the variety and differences in our members. 

Charity Support 

The group is supported by the Menieres Society and VeDA as an official support group listed by both of their web sites. We support both charities in their good work for all things related to balance issues.  We have agreed to abide by their own good and common-sense guidance for support groups and we will encourage members to consider membership of either charity and sharing of member contact details with both at future meetings. Fund raising ideas on their behalf will also be discussed going forward. [See Our Friends section for details and links for both charities]

Guest Expert Speaker Was Andrew Clements   

MC SP  Chartered Physiotherapist

Andrew has worked for over 25 years as a physiotherapist, initially in Australia but he moved to England in 1993 to take up a specialist post at the Leicester Royal Infirmary. Initially he was seeing difficult musculoskeletal problems but developed an interest in dizzy and off balance patients.

His interest in this area developed and he travelled to the USA to further his knowledge. He helped set up the Leicester Balance Centre initially as a pilot project, but then once its success spread he moved out of the physiotherapy department completely and now mainly sees ‘vestibular’ patients (dizziness and balance problems) at the Leicester Balance Centre and London Road Clinic. He has worked with the NHS Modernisation Agency to try and improve services for people with balance problems.

It was within the Balance Centre that he first really encountered Menieres Disease and its effect on peoples’ lives. Working with Peter Rea (and other ENT colleagues) provided the opportunity to link with the Menieres Society, and from that the chance to work as a Trustee with the society (he is currently in his 2nd term as a Trustee, having worked with the Menieres Society for nearly 10 years).

Andrews Presentation Was On :-

Balance and the Vestibular System

The presentation will give an overview of our

balance system with an emphasis on the vestibular system

and the role it plays.

Problems with different aspects of the balance system and the possible symptoms will then be discussed.

Then possible treatment options including exercise will be reviewed.

Andrews presentation should be viewed by anyone intersted in human balance and all sufferers of balance disorders. This was streamed live on Face book to the UK and USA

This can  be viewed in two parts on our facebook page

Part One 

https://www.facebook.com/lifeonthelevelsupportgroup/videos/390265181897719/

Part Two 

https://www.facebook.com/lifeonthelevelsupportgroup/videos/683083762188187/

 Following Andrews brilliant presentation,  the group then covered the following

A Members Story told in Person

Today saw the very first “members story” told in person by that member to the wider audiance. This is a 5 minute talk by any of our members to explain their own journey, their challanges and introduce themeselves to fellow members.  This is not only a lovely way for members to get to know each other, but also each persons story is bound to have some similarities and resonate with other members.  Today our very first volunteer was George, who gave a very good account of his own sysmptoms, treatments and life with a balance disorder. Congratulations and thanks to George for such a good start to thsi regular feature for all of our group meetings.  Any member may volunteer to speak to the audiance for furture meetings. We are looking forward to many interesting members stories.

Partners On The Level

Another new inititive of our support group was luanched today at the meeting.  At our verys first support group meeting in March we mentioned then that we acknowledged the important and sometimes critical role played by a sufferer’s partner (or close friend or family member), in offering vital support, help and encouragement in takling life with a serious balance disorder.  “Partners On The Level” is our dedicated focus upon teh role of partners and how we can share best practice, advice, knowledge and support to all partners.  Often the role of a partner is also very difficult, as their lives are significantly affected, yet no one is available to help them – until now.   We have launched a sub group where partners can join, contribute and even contact other partners to help each other “be the best partner” that they can be. Information on this and how to participate will be emailed to members and shown on our web site soon.

Appeal for more Balance Buddies

We provide our members with a list of our “Balance Buddy Volunteers”, who are people with specific experience in balance issues (normally they have suffered with a certain condition, or they may have a professional skill or interest relevant to balance), The list provides the relevant background for each Buddy, and our members can then choose who they would like to contact. There is no limit to how many different Buddies may be contacted, as we are keen that each member has an opportunity to find the best fit for them.   I am pleased to confirm that two members attended the meeting and volunteered their time for this – that again demonstrates the generosity and passion of our membership.

Feedback from members at the meeting

“Lovely to meet people who know what it feels like, and you dont have to explain everything or worry that they think you are nuts!”

It was very well organised and felt supportive”.

“My friend and I both found it extremely helpful in terms of understanding the science behind our wonkiness.  In fact I’ve modified my own exercises today”

Informal conversations between everyone in small groups 

Finally, conversations were held between members, including our guest speaker, enabling friendship and sharing. This phase of the meeting lasted for over two hours, as much of the benefit for our members is found in simply meeting people who share so much in common with themselves, and being able to talk to people who do understand completely what is being discussed.

Well done and thank you to all members and guests who made it to the meeting – your involvement is what makes each meeting so special and rewarding for all.

Please come and join us if you feel we can help and don’t wish to face your challenges alone.  You are very very welcome. 

Leave a Reply

Your email address will not be published. Required fields are marked *