Wendy Harris, FAS Membership Panel member
Former Peer Support Officer
1.What’s your experience with ageing and living with an SCI? What are some challenges, and what are some learnings?
Apart from ageing issues brought on by a spinal cord injury, such as, decreased lung capacity, increased muscle wastage, ‘lazier’ bladder and bowel, and overuse of shoulder muscles, I am also experiencing normal aging issues like lower back arthritis. Put them all together and it impacts my SCI with increased spasm, increased autonomic dysreflexia, increased hypotension and blood pressure issues. This is all manageable but requires constant monitoring and attention such as sticking to prescribed medication, monitoring blood pressure and oxygen levels, breathing exercises and shoulder massage.
2. In our membership panel meeting earlier this month, you said that “your generation¨ was kind of the first generation of people with spinal cord injuries to move into old age”. What do you feel has advanced for this to happen?
Advancements in modern medicine, pharmacology, and assistive technology since WWII have improved the survival rate after SCI. The last 50 years have seen a big improvement in SCI management. As time has passed, medicos and allied health are now aware of issues that can occur after SCI and can engage in preventative techniques or if issues do occur, we have the tools to manage such as antibiotics, better diagnostic procedures, and improved pressure management techniques.
3. How have you found technologies and care systems evolve over the years?
Assistive technology and equipment have enhanced the lives of people with SCI enormously over the last 50 years. Improvements in mobility equipment like lightweight manual wheelchairs, power wheelchairs and transport options have improved quality of life greatly. Care systems were non-existent 50 years ago; we’ve come a long way from relying on friends and relatives providing care to a national system where the person with an SCI controls their care and support workers. Along with strong disability advocacy, both these factors have brought about a greater quality of life after SCI.
4. What do you think needs to be done better?
Assistive technology and care requirements – I think the NDIS needs to accept reports written by allied health experts, approve them and not question them. I think the NDIS planners need better education in the needs of people with SCI. Care agencies providing support need better education of clients with SCI. People over 65 years and sustaining an SCI need access to NDIS as aged care support for a person with SCI is totally inadequate.
5. For young people with SCI what advice do you have for them as they age? What should they consider/have plans in place?
If you follow the SCI rules to manage your SCI such as take prescribed medication, good pressure management, good diet, regular SCI reviews, you should ease into an ageing situation well. However, you need to observe any changes and consult with peers and professionals when changes occur. Better to ‘nip it in the bud’ than have prolonged long term and potentially life-threatening situations.
If you would like to find out more information and discussion around ageing with SCI, there are some interesting resources from across the globe you may find interesting.
Busting myths about ageing with a spinal cord injury is an article from the Back Up trust in the UK.
Some further discussion on ageing well can be read on the Spinal Injuries Association (SIA) website, another UK organisation.
Some top tips for overall healthy ageing:
- Keeping your weight down
- Improving your diet—decrease sugars and simple carbohydrates, decrease fat and cholesterol while improving on fibre intake
- Keep moving; increase physical activity in your day where possible
- Periodic medical evaluation of various body systems
- Quit smoking
- Get a flu shot annually and a pneumovax vaccine every five to seven years
- Take deep breaths to keep the chest expanded
- Treat sleep apnea if appropriate
- Perform daily skin checks for unusual changes
- Review seating regularly with a physical therapist
- Modify your diet to get adequate protein, vitamin C and zinc
- Protect yourself from sun exposure
- Keep your shoulders strong and make sure your wheelchair propulsion technique is safe and efficient
- Transition to power mobility early, but keep exercising
- Avoid overhead reaching
- Avoid sleeping on your shoulder
- Stretch front shoulder muscles and strengthen back shoulder muscles
- If within your mobility, try to sit upright with shoulders pulled back
- Cultivate your passions
- Choose fun activities that keep you flexible and fit
- Plan activities so you always have something to look forward to
- Cultivate enriching long term relationships
- Look into your environment and ensure you are not trapped, this may require few modifications in your home or moving to a new environment