Post Meeting Reports

After each group meeting we report on all key details and subjects covered in the meeting. Complete with contact details and other relevant links and audio recordings of guest speakers’ presentations. Members may also receive additional information solely for them, but we try where possible to publish here all the information so we may share this freely with any interested viewers. Likewise, please feel free to share this content with anyone – there should be no restriction or rationing when it comes to information for helping others. 

 

Meeting Report  –  Saturday 11th May 2019  

 

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  http://andrewhugill.com/ 

Andrews work in creating the worlds first balance disorder spectrum can be seen here  http://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 http://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

 

Details of products and services mentioned by Andrew

Sunflower lanyard scheme

A scheme offered by all UK major airports, for links please scroll down to details given in our March Meeting Report . 

Also, Sainsbury’s offers the scheme in selected stores  https://www.about.sainsburys.co.uk/news/latest-news/2018/14-08-2018-lanyards-trial

Noise-cancelling headphones

Often Noise can worsen or trigger imbalance in sufferers, so being able to reduce noise can sometimes help.  The Bose Quiet Comfort 35 are the best, but they are expensive. The SRhythm NC75 are also very good and much cheaper, many other brands and price options are available in the high street or online. Amazon range for example click here  

Hearing aids

Andrews Menieres has led to the typical hearing and tinnitus problems in both ears. His hearing aids  are  GNResound Linux Quattro

https://www.resound.com/en-gb/hearing-aids/resound-hearing-aids/quattro They have an app which allows the user to adjust settings for different environments via my phone. You can also use the Multimic and/or Minimic for streaming directly to the aids https://www.resound.com/en-gb/hearing-aids/accessories These all cost quite a lot of money, but you can get a similar set-up with NHS aids using the Phonak Roger Pen https://www.phonak.com/uk/en/hearing-aids/accessories/roger-pen.html This is much cheaper. But you will need to get advice from your audiologist about these and their suitability for you.

Ioniser or air purifier

Andrew can be adversely affected by strong smells. This is a wearable device that ionises the air around you and counteracts the effects of smells, pollen, etc. There are many models. See for example https://www.howtohome.com/air-purifier/wearable-personal-air-purifier/

Sunglasses

Andrew also finds that reduction of bright light into his eyes often helps with his overall sense of well being. He wears clip-on shades (as he is a wearer of glasses already) It’s important to get the right ones for your sensitivity. See https://www.rnib.org.uk/eye-health-eye-conditions-z-eye-conditions/light-sensitivity/getting-the-right-glasses for a survey.

Thanks again to Andrew for his great input, his tips and gadget information and his work in improving the future for all balance sufferers.

Sleep White Noise Generator

Support Group Co Founder Chris brought in her very own gadget that plays relaxing sounds or white noise to help mask tinnitus Her machine is an Avantek, it has 20 different sounds – some just white noise and some water or weather sounds . You can buy other brands in the high street or online, here is a link to this one at Amazon – just click here

 

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.

 

 

Meeting Report  –  Saturday 16th March 2019  

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 

 

 

Michaela Burton with co founder Kevin Higgs 

Michaela Burton  

Michaela is a vestibular audiologist, hypnotherapist and mind coach.  

“Based in Leicester since 2000 I have had the benefit of working with Prof. Peter Rea and Mr. Anil Banerjee, world renowned consultants in balance assessment and treatment, for many years. I have always found it very important to be a calm and approachable listener whilst helping people find what is right for them and assisting them achieve their aims in a way that provides the most benefit. My experience in treating people with imbalance led me obtaining my MSc degree in Audiology rehabilitation with specific interest in the effects of anxiety in imbalance in 2011 from Aston University. Further to this I studied and gained the Diploma in hypnotherapy and mind coaching in Nottingham.  I take great joy and pride in being able to help people with both the physical rehabilitation of their balance system and in improving their mental well being, whether this is directly associated with imbalance or from other factors or circumstances. It is a wonderfully satisfying feeling for us both each time I see my clients successfully find relief and benefit when they do it differently!” 

Michaela spoke and included a question and answer session for some 40 minutes, covering many aspects of her professional experience and tips and hints on both balance rehab and coping with anxiety.  Feedback from the members was very positive about Michaela’s presentation. 

Michaela recommended one book for members concerned with managing anxiety and stress.  

 

This was “How to Master Anxiety:

All You Need to Know to Overcome Stress, Panic Attacks, Trauma, Phobias, Obsessions and More (Human Givens Approach)

by Joe Griffin  (Author), Ivan Tyrrell (Author)   

This book is widely available from good book shops and Amazon   

 

 

 

You can find out more about Michaela, her work and how to contact her on  www.do-it-differently.co.uk 

Click below to listen to Michaela’s presentation

And a big thanks from all at Life On The Level for a great presentation 

 

 

 

 

What do our members want from their support group ?  – A general discussion and open floor 

Members provided feedback on preferences for support group speaking topics, group interest and events. Applying scores to reflect their importance. The group total scores, expressed as a percentage are as follows and the group organisers will be following these preferences as a guide for future activities   Results shown as level of interest by the group – That will be re checked periodically for any change in priorities

Future Guest speaker subjects 

Balance Rehab                                                                            100% 

Balance Medical treatments                                                80% 

Anxiety Stress treatments                                                   70% 

Alternative treatments and Mindfulness                   80% 

Deafness                                                                                         60% 

Tinnitus                                                                                           50% 

Employment rights and balance disability                    65% 

Group Interest / Lobbying 

Fighting for more medical resources in the NHS for Balance disorder patients [to reduce waiting times]         80% 

Cost discounts for members in any “cost areas”   [From private healthcare to walking sticks]                               80% 

Securing free HR/Employment advice for members    [Ensuring employment rights are respected]                 60% 

Members Events 

Tour of Balance clinics,  visits to other related cause organisations  and  facilities                                            80% 

Raising public awareness of the support group and wider Balance issues                                                             85% 

Future fund raising events for balance charities    VeDA & The Menieres Society                                             85% 

Very positive voting for almost all options. We are sure to be busy over the coming years !

 

Getting to know your fellow members –  Group Discussion  

Some very good questions were raised by members resulting in other members providing very useful information. In particular a question was asked concerning issues around balance mobility and air travel.   

Information was supplied regarding the “hidden disabilities” passenger support scheme, sometimes referred to as the “sunflower lanyard” scheme.   

 

Anyone with a serious balance disorder qualifies for this in airport support, where you will be given the appropriate level of assistance throughout all UK airports to get you to and from your plane in safety and without stress.   Please click on the following links for details of this scheme at each appropriate airport. These services are free of charge and you have every right to use them. 

Birmingham http://birminghamairport.custhelp.com/app/answers/detail/a_id/312/~/hidden-disability-lanyards  

East Mids   https://www.eastmidlandsairport.com/help/special-assistance/hidden-disabilities/  

Luton https://www.london-luton.co.uk/special-assistance-landing/advice-for-customers-with-non-physical-disabilitie  

Manchester https://www.manchesterairport.co.uk/help/special-assistance/invisible-disabilities/  

Heathrow https://www.heathrow.com/airport-guide/assistance-at-heathrow/hidden-disabilities  

Gatwick https://www.gatwickairport.com/at-the-airport/passenger-services/special-assistance/hidden-disabilities/  

 

The group was also informed that sufferers of balance disorders should also qualify for  The Disabled Persons Railcard  – this is for people with a disability that makes travelling by train difficult.  See https://www.disabledpersons-railcard.co.uk/ .

You may need to contact them to discuss supply of evidence of your medical diagnosis. But on a successful application the rail card can secure you discounts of up to 30% off normal fairs.  

 

 Member to Member Contact Details Listing 

A new facility of “member to member” contact detail sharing was launched at our meeting. 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 elected 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. 

 

Informal conversations between everyone in small groups 

Final conversations were held between members, including our guest speaker, enabling friendship and sharing. 

 

Meeting Feedback. 

We always ask for feedback from our members at each meeting, so that we can seek to improve and understand when we are doing well and helping each other. Please see a sample of feedback from this meeting. The feedback explains why we are here – Thank you. 

Feedback at the meeting end from members 

“The talk from Michaela was extremely informative”   

“I came to the group today quite upset and felt hopeless due to a bad week because of difficulties, I am so grateful to my friend for bringing me here, such a positive atmosphere, a great speaker and lovely members. I feel that I am not alone now. I would love to keep in touch with everyone and attend more meetings. Thank you you really made a difference” . 

“The first meeting was great and very helpful & informative. Lovely to meet people with similar issues”  

“A Group for Balance disorders is an important way to support the life experience of these debilitating conditions”. 

By Email  

“Good Morning Kevin, Jola & Christine,  

I would like to say a big thank you for Saturday. 

For me this group came at the right time. Although my symptoms are not as bad as some other people, not knowing what will come next, still waiting for my diagnostic plus some personal issues really got me down. I came there on Saturday morning trying hard to not cry and I left feeling so good, positive and feeling that I’m not on my own. 

It might sound overdramatic, but you really made a huge impact in my life. I left on Saturday and I went to my friend’s party (which I usually refuse) and they commented on how positive I am. I know is not going to be easy and I know they will be ups and downs but is really nice to know I have other people to talk to and understand me. 

Michaela was a great speaker, such a passionate and caring specialist. Thank you. 

Once again thank you so much for a great group, you are doing an amazing job. I’m really looking forward to see you again. 

Hope you have a lovely week,  

[name removed] – a proud member of Life on the Level now :)” 

 

Thank you all for such wonderful feedback. This is why we are so determined to reach everyone who can benefit from our support.

 

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.