The Victorian Spinal Cord Services, Royal Talbot Rehabilitation Centre and Independence Australia, formerly ParaQuad Victoria initiated this new support group in 2006 as a direct result of:
· the increasing number of people with incomplete injuries seen through services,
· the unique circumstances and experiences faced by people with spinal injuries who can walk, and
· the lack of current support services available.
Experiences common to people with incomplete spinal cord injuries who have some capacity to walk include:
· Significant concerns that may not be understood or visible to others (e.g., changes in bowel or bladder functioning, pain, fatigue, motor or sensory changes, sexual changes, changes in hopes and expectations about the future etc)
· Not going through specialist spinal cord injury rehabilitation
· Feeling isolated from other people with incomplete spinal cord injuries like their own
· Being unsure of relevant services and supports in the community
Ongoing Meetings
We aim to have ongoing monthly meetings at Independence Australia, with discussion topics or guest speakers arranged by consensus with members.
Some of the areas of interest to members include:
· Hidden disability – how it impacts you / others who can walk.
· Useful services, doctors, agencies and organisations to know about
· Incontinence, bowel and bladder functioning
· Fatigue - peoples’ experiences and how to manage
· Physiotherapy – how it can help
· Emotional impact on individual and family
· The health care system – how to navigate it, what is available
· Common health problems (eg, pressure sores, UTIs)
· Incontinence, bowel and bladder functioning
· Rehabilitation experiences
· Dietary issues of relevance
· Daily difficulties and hassles
· Pain and pain management
· Changes in sexual functioning · Medications / interactions, what is good to take for different problems / issues.
· Managing moods and emotions
The timing, frequency, scope of ongoing meetings and venue may change as the group becomes more established and more people join the support group.
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