Equipment
Australian Leukodystrophy Support (ALDS) group members work on a voluntary basis to raise funds and access grants to be able to buy equipment to support people with a Leukodystrophy.
We don’t have a warehouse full of equipment (unfortunately!) but we are building up our stock with each passing year. The equipment is either loaned out or provided to families and people in need, dependent on availability and requirement.
For example, in 2005 the ALDS applied and received a grant from the Paul Newman Foundation enabling the purchase of two electronic hospital beds, designed to increase the comfort level for someone spending all or much of their time in bed. The beds are fully adjustable with special pressure mattresses to ease the occurrence of bed sores so the patient does not need to be turned or moved so frequently during the night. The beds are particularly useful for carers because the enable better manoeuvrability while helping to prevent back injury.
The ALDS currently has available for loan to members:
- 1 small free standing spa (suitable for a small child)
- 3 hospital beds and mattresses
- 3 hoists
- 1 Ricon Wheelchair Lift for installation into a car
I Hoist is available at this time. All other items are on loan (which is as it should be).
If it becomes known to us that someone is in need of something specific fairly urgently then the ALDS will do everything in its power to either apply for a grant or purchase the item directly if we have the funds. Or we may try and find out how a family or person can source such equipment themselves through government or other agencies.
When we loan equipment out, we do ask that the family or person concerned sign a letter of agreement which outlines our expectations with regard to the use and care of the equipment and the terms and duration of the loan (no fee is charged). The items are insured by the ALDS to make it worry free.
Our best advice to families who are seeking equipment or resources to support a loved one with a Leukodystrophy is to ask lots of questions of your council and local, State and Federal government sources. Above all, be persistent. Sometimes it takes a few tries to get to the right person. Don’t give up and feel free to contact us—we may be able to help or link you with someone who can.