PMA/PLS Support Group

Have you been diagnosed with PMA/PLS? If so please read on...

Are you interested in joining our email-based support group?

People living in the UK who fall under this heading are inevitably geographically dispersed due to the rarity of their disease.

We have a well-established email based support group, where people living with rarer forms of MND have an opportunity to link up with others and have an opportunity to contribute to the  Experiences of PMA/PLS pages.  Whilst most members are from the UK, there are some from other countries, so becoming international.


There may also be additional opportunities in the future for this group to look at developing our literature further ensuring it is more geared to the needs of people with slower progressing forms of MND.

Want to know more?

Jean Waters is a member of the MND Association Board of Trustees and has been living with PMA for several years. Jean takes an active role in co-ordinating the email support group. Jean also produces an informative newsletter each month with contributions from members of the email support group. The group also runs its own chat room for members to get to know each other a little better and is a great way to converse - no voice needed!

There has also been a steady flow of hints, tips, advice and news within the email support group via a regular email update.  Jean lets the MND Association know about articles of interest that are suitable for inclusion on this website.

If you are interested in taking part you may want to let us know the type of MND you have and how long you have been living with the disease. This gives everyone within the group, the opportunity to contact people living with the same type of MND as they have.

Your details will be forwarded to other people also taking part in the email support group, so it is important that you feel comfortable and agree to share your email address with others. Your email address will not be given to anyone other than those already taking part in the support group and will not be published on our website.

If at any time you decide you no longer want to take part in the group, your details will be removed from the contact list.

Equally, if others decide they no longer wish to take part, you will agree to respect their wishes and not make further contact with them.


Interested?

If you are interested in joining the support group please e-mail your details to: care@mndassociation.org