Meeting Report – Saturday 11th May 2019  

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

 

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]

 

Our Expert Guest Speaker 

Prof Andrew Hugill – Guest Speaker & Support Group Member

Andrew is based at Leicester University, and is the founding Professor of Creative Computing. His personal  academic details being : Principal Fellow of the Higher Education Academy , National Teacher Fellow, Fellow of the Royal Society of Arts, PhD in Composition, MA in Musical Composition.

Andrew is a member of our support group, suffering with Menieres and other complications.  You can find out more about Andrew and his work on  https://andrewhugill.com/ 

Andrews work in creating the worlds first balance disorder spectrum can be seen here  https://www.balancedisorderspectrum.info/

Andrew gave the group a wonderful insight into his own personal journey with a balance disorder , and how this has impacted upon his professional career and led to many new areas of work and research for him in the field of Balance disorders.  Andrew covers some very exciting topics from the newly created first ever Balance Disorder Spectrum, to his ambitions for developing artificial intelligence led diagnosis for all balance disorders.  Another exciting project of Andrews is that of the worlds first platform for staging concerts in which aurally diverse musicians perform to an aurally diverse audience. Andrew has composed music for this project and the first performance is later this year. For details on this please click here https://www.auraldiversity.org/     Andrew also introduced some information concerning various aids and services that are of use to those with balance disorders

Click below to listen to Prof Andrew Hugills presentation

 

Getting to know your fellow members –  Group Discussion  

Member to Member Contact Details Listing 

Our new facility of “member to member” contact detail sharing was discussed again. Members can elect to share their name & email address to a central list that is then circulated to all members on this list.  This will allow members to start contact and conversations with other members between group meetings. The contact information will not be shared with any members who have not opted in to be on this list. Members may be added to, or withdrawn, from this listing at any time. We hope this will encourage many conversations and contact between all members.   Over one third of our members have now opted in to this, and we hope that their new friendships and conversations will bring a lot of comfort and support to them.

Members Stories

We will be launching a new section on our web site soon, that will feature our members stories. Their stories will explain how their lives have changed with the onset of balance issues, and give intimate accounts of real life challenges, the painful lows, but also details of their personal strengths and highs of working through the issues to find their way to solutions and a better quality of life. These stories will be shared anonymously , and it is hoped that these real life accounts will both help the general public understand how traumatic and disruptive balance conditions can be but alos resonate with fellow sufferers who may then feel more likely to seek their own solutions with such as our support group or other avenues. Members response was very positive and we will be curating these precious insights over the coming months.

Public Awareness and charity fundraising

The support group plans to undertake its first “Outside” activity in the centre of Leicester soon. Helping to boost awareness to the general public and if possible raising funds for the two balance charities The Menieres Society and VeDA.  Members again volunteered in good numbers to attend on the day (when details are confirmed) to help engage with the public and help to explain the significant and many issues related to having a balance condition.  Members will be contacted as and when there is any progress on this event.

Member Personal Appeal for support

Due to the nature of our members balance issues, many cannot attend the official group meetings, and for some they live too far away to make the journey. Where this is the case we allow and encourage these members to specifically ask all of our members for helpful advice and support. The group administrator then communicates this (anonymously at first) to the individual members. Those members who feel that they have the relevant experience or similarity in challenges then volunteer to email or speak with the specific member – who cannot be physically at our meetings.  Today’s appeal was for a person with bilateral Vestibular disorder (hyperfunction) with oscillopsia, and was hugely successful in finding people willing to engage and help. [please note that we can only offer this service to members of the group who have verified contact details]

 

Informal conversations between everyone in small groups 

Final conversations were held between members, including our guest speaker, enabling friendship and sharing. This phase of the meeting lasted for over an extra hour, 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.

A huge thank you to Caren, the Clinic Manager, and the London Road Balance Clinic for their generous supply of the meeting venue, refreshments and those naughty cakes!

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. 

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