In 2016 we launched a 6 minute video for MNDA Awareness Month to help highlight the importance of social contact and mutual support for individuals who are affected by MND. The MNDA Nottinghamshire B ranch runs a social event every 'Second Thursday' at The Mapperley Plains Social Club. Everyone is very welcome.
Read more here.
Motor Neurone Disease (MND) is the name given to a group of related diseases affecting the motor neurones in the brain and spinal cord.
The effects of MND vary from one person to another as does the rate of progression. Being well informed and planning ahead can help to make the best use of the present time, and enable people with MND to achieve the best possible quality of life.
Motor neurones are the nerve cells along which the brain sends instructions, in the form of electrical impulses, to the muscles. Degeneration of the motor neurones leads to weakness and wasting of muscles.
MND is not contagious. It can affect any adult at any age but most people who have MND are over the age of 40 and the highest incidence is in the 50-70 age range. Men are affected slightly more often than women. Precise figures for incidence and prevalence of MND are still uncertain. The incidence (the number of people who will develop MND in any one year) is approximately 2 per 100,000; the prevalence (the number of people who actually have MND at any one time) is thought to be approx 7 per 100,000. The estimated number of people with MND in the UK is up to 5,000.
There is no specific test for MND and it may be difficult to diagnose with certainty in the early stages of the disease because the pattern of symptoms varies between individuals and may be similar to those seen in other conditions. The neurologist (who usually makes the diagnosis) will probably carry out a number of specialised tests in order to eliminate other conditions as well as giving the person with MND a thorough physical examination in order to confirm the diagnosis.
The cause of MND is not yet known, but a great deal of research work is being carried out, and encouraging advances are being made in understanding both the disease process and the way motor neurones function.
Given that MND is a progressive condition, it is important to plan ahead and find out in advance about the services or equipment which may be needed. A range of professionals are employed by Health and Social Services Departments who can help people with MND and their families to live with the condition.
A range of services are available via the Association to ensure that people with MND are enabled to make informed choices about living with the disease. For more information, click here to visit the national Motor Neurone Disease Association website.
The Nottinghamshire Branch of the association is a group of like minded individuals who volunteer to provide support and information for individuals and families who have been affected by Motor Neurone Disease.
Many of the volunteers have personal experience of the disease and whether you are a person living with the disease, a carer or family member, we can help you get the most out of life.
MND is an incurable condition that paralyses the muscles, leaving people unable to do the everyday things the rest of us take for granted. Walking, talking and swallowing may become virtually impossible, yet the mind and senses are rarely affected.
Click here here for more information.
Our Branch liaises with health and social care professionals such as Speech Therapists, Occupational Therapists and the Medical Profession. Our Branch holds regular Open Meetings at the Mapperley Plains Social Club, Nottingham for people living with MND, their family and carers. These provide an opportunity to meet with other people living with the disease, and to share experiences and ideas.
We provide information, advice and support in the following ways.
We run two main support groups in Nottinghamshire, both of which are open to people living with MND, their carers, family and friends.
It’s a great opportunity for people whose lives have been affected by MND to get-together in a relaxed and welcoming atmosphere in order to share with one another and learn more about the issues surrounding MND.
People living with MND, their carers, family and friends. Also Healthcare professionals from the MND Association or the MND Care Centre at the QMC are in attendance.
Because it’s a unique opportunity to meet other people whose lives are affected by MND. The feedback we get from those who attend is overwhelmingly positive.
At the Mapperley Plains Social club on Mapperley Plains Road (NG3 5RH) at 2.15pm - 3.45pm View map
Every 'Second Thursday' . Dates can vary from time to time so please take a look at our online calender for more details.
If you have problems with transportation, let us know as we may be able to help. If you require any further information regarding our ‘Second Thursday’ meetings, please ring Roger Spells on 07918 030260 or email roger@mnd-notts.org.uk. We hope this information will inspire you to join us and you can be assured of a warm welcome.
We are a very small group of people living with or affected by MND.
Some people find it difficult to travel to Mapperley so we hold a support meeting every month in Retford. These are attended mainly by people from Bassetlaw.
The meetings are held on the 1st Wednesday of each month in Bassetlaw Hospice, Cedar House, North Rd, Retford, DN22 7XF from 11 - 12:30pm
View mapMost months someone from the Community Neuro Team attends, such as an Occupational Therapist, Speech and Language Therapist or Physiotherapist.
The meetings always start with refreshments and are organised by volunteers who also attend Second Thursday meetings.
We are very friendly and support each other.
Any questions contact Jenny Smith on 01636 683433 or email jenny@mnd-notts.org.uk
If you’d like to become involved with the Notts Branch Committee and join in with all the other Committee members doing their best to support people living in Nottinghamshire with MND plus their carer’s and family members, then please contact Mike Cole for further details. We meet every couple of months and get involved in all sorts of activities offering support and the only skill required is enthusiasm.
I've been involved with the Notts Branch in various roles since 1986 when my mum was first diagnosed with MND. Over the many years I've met numerous interesting and friendly people as well as being involved in a number of exciting and at times challenging fundraising events. I'm currently Chair of the Branch working with a great Committee full of enthusiasm.
I first got involved in the MND Association shortly after my Dad was diagnosed with the disease in 2005. At the time I had no idea what the disease was and needed to find out more information. This led me to the wonderful people who run the Notts Branch, and I've been a Committee member ever since. I sincerely hope that one day there will be a world free of MND, so families don't have to go through what we went through.
I have been involved with the Nottinghamshire Branch, as Treasurer, since 2007, following my retirement from IBM. Although I don't have any personal experience of MND, I am constantly impressed by the way in which people living with the disease cope with the many challenges they face and I am very grateful to be able to help in my own small way
I helped to set up the MND Association in 1979 when my husband had MND. At that time there was no support or information available to help people. Since then I have been a member of the Nottinghamshire Branch and organise the North Notts support group. I am also an Association Visitor.
After the devastating loss of my husband to MND in 2019 , I wanted to continue my involvement with the MND Community as a way of ‘giving back’ and saying ‘ thanks’ for the excellent care and support we received from the QMC Care Team and the Notts Branch. I was therefore so pleased to have the opportunity to join the Committee in January 2020. It’s a pleasure to work with such a dedicated team, and hopefully, the experience and knowledge I gained on our personal journey is contributing to the work of the Branch and supporting others travelling the same path.
I got involved in the MND association around 10 years ago when my now wife asked me to help out at the race night in 2011. I have since helped out at many other events for the Nottingham Branch and now run the website and social media channels, as well as produce our quarterly bulletin.
I have worked with individuals with MND since 2012 when I qualified as a nurse. In 2018, I joined the MND Care Centre at QMC and saw first-hand the excellent support offered from the Notts Branch of the MND Association; which complements care by the NHS. I therefore joined the local Branch Committee in 2020 to try and do a little more in helping people with this devastating condition.
If you want to know more, please get in touch.
Carol Hughes (Branch contact) - carol@mnd-notts.org.uk or 07977 355552 / 01623 409943
Carol Hughes (Secretary) - secretary@mnd-notts.org.uk
Mike Cole (Chair) - mike@mnd-notts.org.uk
We’d love to hear from you!