Meeting Report – Saturday 15th October 2022  on ZOOM

Members Share Their Stories

Keeping on the level: Living well with long-term health conditions.

Links to watch the full meeting video are at the bottom of this page

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. 

Five of our members generously share their stories

During our meeting we heard of the journeys and challenges our members have faced with their own balance condition. Covering all aspects of living with , coping and overcoming the difficulties we all face.  Other members then added their own comments on the issues raised. A must watch for anyone with a serious or chronic balance condition, where you can learn from others and understand that you are not alone.

We heard from :-

Clare with Vestibular Vertigo

Steve with severe vestibular weakness and possible PPPD

Sara with Ataxia Type 2 with Oscillopsia

Richard with vestibular migraine, bppv and undiagnosed PPPD

Nichola with MdDS & Gluten Ataxia

A Huge Thank you to our brave members for sharing with everyone their own intimate story and how balance conditions have impacted on them and their lives. We hope to share many more stories in the future.

Watch the full meeting now on Face Book or Zoom

Click to watch on YouTube

Click here to watch on Facebook

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

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