ASSOCIATION VISITORS

Our Association Visitors visit people with MND in their own homes in order to offer support to the person and their carers, family members and friends. They also liase with Health and Social Care professionals to help ensure that they are receiving the services they require.

To get in contact with one of our Association Visitors please email us on secretarymnd@yahoo.co.uk or give us a ring. See Contact Us section for our telephone number.

If you would like more information on the role of the Association Visitor there is a dedicated page on the National Office website: www.mndassociation.org/full-site/publications/listing.htm.

EQUIPMENT AVAILABLE ON LOAN

The IOW Branch has a range of equipment that can be loaned to people with MND. If you feel any of the items below could be beneficial for you or for a family member/ friend please contact us.

Riser Recliner Chair
Paging System
Kenwood Food Blender
Magna Doodle Board
Telephone Amplifier
Twiddle Hand Exerciser
Bean Bag Tray
Sole Mate Foot Massager
Foot Warmer
Touch Operated Table Lamp
Tin Opener
Non Slip/ Spill Jar/ Bottle Opener
Button/ Zip Hooks
Multi Opener
Small Stool
No Hands Alarm
Text Telephone
Tipping Kettle
Lightwriter Communication Aid
Voice Amplifier

As you can see above we have collected to date a varied range of specialist equipment for people with MND. At any stage some of these items are in use, some are on loan to Earl Mountbatten Hospice (EMH) and some in storage. There are other larger specialist items we have obtained such as stair lifts, wheel chairs and special turning beds but these we have usually hired, either through our National Office, our local Branch or EMH. However obscure, we usually manage to find a stockist who comes close to what is required, and we have found most of them very co-operative and more importantly understand the urgency of the request.

As a lot of the items are expensive, we are busy fund raising through store collections, stalls at fetes, donations, sponsored walks, etc. We don’t get help from any other source, as we are entirely self-funding.

All of these were bought for people when the need arose, and families have given them back to us in due course.

HOW TO GET HELP?

There are a number of different ways in which aids can be accessed:

Contact with an MND Association Visitor

Through a Social Services Care Manager
Attendance at the EMH day centre, where a person can see Dr. Johnson and the Occupational Therapists for an ability assessment
On the recommendation of a Speech and Language Therapist

If necessary please ask your GP to make the appropriate referrals e.g. to the EMH day centre, and/ or the Speech and Language Therapist if required.
Phone the local Island Helpline: 07922 12 34 16 and speak to an Association Visitor who can visit you in your home.

Special Room at Earl Mountbatten Hospice

The Local MND Association branch is funding conversions to one of the newly built rooms at the Island's Hospice. This room will feature a range of environmental controls. These will allow maximum independence for the person staying in the room even if their mobility and limb function is limited. A special control panel and easy to manipulate switches will control, for example, the lighting, air conditioning, TV, curtains and stereo. The plans are being finalised – we will provide updates on when the room is ready.

HOLIDAY OPTIONS

Holiday Chalet in Totland

The Spina Bifida Association have a holiday chalet in the seaside town of Totland on the Isle of Wight. They have very kindly invited people living with MND to use it too. It is available for people living on the Island or on the mainland. If you rather like the sound of a holiday on the Isle of Wight and are interested in finding out more please contact us on the Island Helpline and we can put you in contact with Mrs Sylvia Griffiths (the Spina Bifida Association Branch Chairman).

Tenerife

The Sarah Matheson Trust is a charity that raises funds and awareness for a degenerative disease called Multiple Systems Atrophy. In their Spring 2005 Newsletter one of their readers wrote in to let people know about a hotel in Tenerife called Mar y Sol. They describe this hotel as “health hotel” and it is organised around the needs of disabled people and anyone with restricted mobility. It features good-sized rooms, which allow wheelchair access, with walk-in showers and any other equipment e.g. raised toilet seats, wheelchairs, bath lifts) required can be hired form a company based in the hotel.

Please see their website for further details:
www.marysol.org

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