Hints and Tips

This information was gathered from experiences of DS-YABI members and should not replace consultation and advice given by medical professionals. This information should be used as a guide only.

Click on an item to show information/tips

Ankle Foot Orthosis (AFO) Issues and Alternatives

  • Electrical impulse system controlled by remote control called a Bioness L300 Foot Drop System imported by Surgical Synergies at $8500 a unit. Info at www.surgicalsynergies.com.au
  1. A cheaper suggestion is the strapping system that uses opposing forces called the Ankle Strap see www.xstrap.com.au - approximate cost $175- Depending on how much support you need will depend whether this aide helps you. Our member Lara is happy for you to try hers before you buy.
  • Buying shoes when wearing an AFO can be problematical. Try to get lace up or Velcro tab shoes that have an insole that you can remove to give extra depth to accommodate the AFO. Specialty shoe stores have more fashionable styles but they may be very expensive. Ask your GP for a referral for these shoes, as you may then be able to claim part of their cost from your health fund. One such store is Comfort and Fit Shoes. 18-20 Ross Street, Parramatta PH 9630-0066.

Aides

  • The purchase and supply of aides can be a costly exercise. PADP (Program of Appliances for Disabled People) is a system where by the user pays a token fee and waits on a waiting list for the aide to be supplied at no further cost. It requires a referral from the allied health provider/ GP. As there is a waiting list, supply may take some time so it is always a good idea to get your referral and PADP payment in well ahead of the time when you think you will need to replace an aide, e.g. AFO, Second Skin Garment etc.
  1. Check that the use of aides is still of some benefit. Beware that the use of aides does not become habitual rather than efficacious. Ask your therapist “Is this aid still helping me to improve?”, “What is the latest research showing about the efficacy of these aides?” eg. Consider if you need to wear a foot or hand night splint if it is no longer doing you any good.
  • Second Skin – a garment made to measure in the same way that burns pressure garments are made- can be used to stimulate nerve endings and improve function. These garments are extremely expensive, are only available through OT referral and, if they are to be of any use, must be provided very early on in recovery. This can prove a problem since waiting lists are huge. PADP can help with costs.
  1. TAD- Technical Aids for the Disabled- see www.tadnsw.org.au - Custom designed aids by volunteer often retired engineers and technicians, by physio or OT referral. Survivor only pays for the materials used not the expertise or labour.
  • ILC – Independent Living Centres – see www.ilcaustralia.org - for gadgets and aides to assist in the home environment.
  1. “Living One Handed in a Two Handed World” by Tommye-K Mayer is a book of tips and strategies to use in dealing with doing every day life tasks eg. tying shoelaces, putting toothpaste on a toothbrush etc. with only one hand, written from experience.
  • Livescribe Smartpen- a pen which records and sychronises spoken word to writing –see www.smartpen.com.au, RRP for the current model, 2Gb is $329-
  1. If you are a walking stick user with hemiplegia, tie the middle of a length of elastic to your walking stick and then, with the two loose ends, make a bracelet for your wrist so that should you need your “good” hand or drop your stick you can retrieve it easily and quickly.
  • If you have left sided neglect and find reading difficult, tape a piece of red plumbers tape to the table you regularly use, slot your reading material up to it and use the red tape as a cue to look for, to help find the edge of the page. A transportable version is to use a very bright bookmark and place that BESIDE the book on the left hand side and look for that.
  1. TADNSW now has a computer support service for people with disabilities or in receipt of Centrelink benefits. They refurbish computers and make them available in two pakges, one at $250- (the starter pack) and the other at $380- (the power pack). For more information, contact them on 02 9912 3400 and select option 1.

Alternative Therapies

  • Acupuncture useful in the first few months post stroke, was not very effective in assisting long term function of affected limbs - discuss with your rehab specialist. Make sure person is accredited
  1. Massage has been found to be enjoyable but short lived in relaxing affected limbs, muscles work hard post stroke and at times do not work properly - remedial massage can help to soothe sore muscles and to de-stress
  • The efficacy of Brahmi and Ginko Biloba were not consistent and not proven. (One member took Ginko as a pill and got palpitations and the other took the Brahmi as a tea with no result)

Bobath Therapy

  • Most physiotherapists trained in Australia have learned to treat stokes with a good logical and evidence-based approach.
  • A different approach is called Bobath. Therapists from countries like the UK often train with this discipline. It uses techniques like patterns of normal movement and a therapist having a wholistic approac (eg reaching tasks really should be done in a real-life setup eg reaching for a cup).
  • This concept can be just part of your treatment plan and if often combine with other therapies.
  • Discuss this with your physio. It is also known as Neuro-developmental therapy (NDT)
  • To find a physiotherapist trained in Bobath email abndta@yahoo.com (This is from a Bobath/NDT National website).

Botox

  • Botox may assist in the function of limbs. The current new treatment is called Dysport., very good for alleviating muscle tone (tightness) but is very expensive if you can’t get it through the public system - better results in smaller muscles (arms not legs)

Companion Card & Concessions

  • This is a government initiative whereby, if you qualify, a card can be issued to you so that the person who assists you to participate in life can get entry to certain venues for free, primarily so you can be participate. To apply go to: www.nds.org.au/nsw/companioncard.htm
    Some examples of where to use it: Any public transport, Greater Union,  the Aquarium.
  • Pensioner all day ticket for public transport. This costs $2.50 and can be used throughout the day you bought it for all buses, trains and public ferries (including the Manly ferry).

Fatigue

  • Fatigue is one of the most common outcomes of a stroke. Generally as time passes it will lessen, or you find better more efficient ways of doing things that are not so taxing. Taking naps/power rests can really help.
  • Diet can play an important part in managing fatigue. Small meals spread evenly throughout the day may be better at providing constant nourishment to fight off fatigue than three large meals. Also certain foods may also be best avoided.

Hemianopia -Loss of Vision in One Field

  • If you are a stroke survivor with hemianopia talk to your local optometrist. There is a new approach to improving sight for someone with the hemianopia by using prismatic lenses. The technique is called "Eli Peli Fresnels". By using the refraction of prism lenses, more of what is to be seen is "moved" into the field of vision which has not been disturbed. Check out www.chadwickoptical.com/hemianopia.htm for an explanation. This is of greatest benefit for someone who has recently had their stroke but can also be of some use for someone who has already learnt the usual scanning mechanism for coping.

Incontinence Support

  1. Guidelines for the Continence Aids Assistance Scheme (CAAS): www.bladderbowel.gov.au/%5Cdoc%5CCAASGuidelines.pdf

Leisure Opportunities

  • A book published by Warringah Disability Information Services called “Leisure for Youth and Adults with Disabilities in the Northern Beaches” covers a wide range of activities, particularly in this area. To obtain a copy call the Disability Information officer at Warringah Library on 9942-2686.
  1. A fortnightly newsletter also has heaps on opportunities for disabled youth – go to www.warringah.nsw.gov.au/services/disability.aspx or www.wls.nsw.gov.au/screens/dservices.html
  • For wheelchair users there is a book called ‘Access Sydney’ through the NRMA
  1. Servicing Sydney's Eastern Suburbs, North Shore, Northern Beaches and Inner West there is a service called 'Carers that drive'. They will drive you to do your shopping, lunch, medical appointments etc door-to-door. Ph 0403 057 051 or look at www.carersthatdrive.com.au. NB the carers need to drive your car. It costs $35/hour but there's a pensioner discount.

Mental illness

  • Mental illness is extremely common post stroke. Stroke can affect the brain's ability to deal with emotional issues. Also, life changes caused by stroke and frustration can result in mental illness. Mental illness can be depression, anxiety or stress. A common related issue is frustration. To ensure a strong recovery from stroke, having a good mental state is key (eg. if you are too down to get out of bed or too anxious that you can't sleep, putting focus into rehab is not easy). Mental illness can kick in a few days post stroke or years afterwards when the full impacts of stroke on one's life are understood. The best thing to do is to seek counselling early, which can give you techniques for dealing with problems - see your GP for a referral to a registered psychologist. (G)
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  • Refrain from over reacting, be calm and patient with yourself, think positively and reframe thoughts which are likely to cause anxiety. (D)

Neuropsychologist Report

A neuropsych report may be useful to:

Explain how the physical damage to the brain equates to the issues faced such as fatigue, short term memory loss, word finding difficulties and emotional lability, and/or Provide documentary proof they the survivor requires certain considerations when returning to school and work, and/or  Make recommendations on how to tackle issues and find ways to solve them. You will need a GP referral to see a neuropsych.

“Any neuropsych report has to be taken with a grain of salt. Don’t limit yourself by the results of the assessment and treat it as a worst case scenario”. (E)

Parenting

  • If you are the parent of a very young child, ask your OT to help you practice picking up your child by using a weighted doll. This will help you have the confidence to pick up your child.

Parking Permits

  • You may be eligible for this support. The permit goes on the vehicle you are being driven in and is yours not the owner of the cars. To find out if you qualify go to www.rta.nsw.gov.au
  • If you are buying a car which will be converted to be able to accommodate a wheelchair, it will be exempt from taxes. Contact your accountant about this.

Public Toilets

  • There is a universal key available from Master Locksmiths that opens all public toilets in council areas which are part of the program (Penrith, Katoomba, Canada Bay and the City of Sydney are the ones we know of). It is known as the MLAK – (Master Locksmith Access Key). Cost is approximately $20, see www.masterlocksmiths.com.au for locations of local master locksmiths.

Returning to Study

  • Develop a good relationship with the Disability Support Officer or Counsellor.
  1. Apply for all provisions well in advance of needing them e.g. for exams or practicals. Find out yourself what you are entitled to, don’t rely on a supervisor or teaching staff to know.
  • Don’t let up on the powers that be- keep hassling for what you think you need.
  1. You may not have the stamina anymore to stay up all night to finish an assignment so start them as soon as you can and make allowance for time to read over what you have done before handing it in. Try to manage your time well.
  • Don’t leave it to the last minute if you feel you may need an extension.
  1. If an assessment is required schedule this well in advance too.
  • If your exam is scheduled as a long one, (e.g. 3 hours), ask if it can be broken up into two with a rest period in between.
  1. If there are mobility concerns arrange for your PT/OT to come and check out safety issues.
  • Apply for ALL your entitlements even if you think you won’t need them. At least if you have them granted you can forgo them but you can’t get them approved at the last minute.
  1. Try to develop good relationships with staff and fellow students. They are more likely to extend assistance and good will if they already know and like you.
  • Don’t be frightened to seek assistance if you need it. After all you are ENTITLED to it.
  1. Find out what supports are available (particularly in the library, photocopying, fetching books on high shelves, binding etc) and USE THEM. They won’t continue to be made available if they are not seen to be needed.
  • If you have problems listening and writing at the same time for cognitive or visual reasons, use a dictaphone to record the lecture/lesson, or listen to the lecture again on the internet and write notes later. This helps you to revise what you have seen and heard. If a scribe is available this may also work for you.
  1. Plan your sessions of study and include sufficient breaks.
  • Leave ample time to get to your class locations.
  1. Find a route to class that you are happy with and use this same route EVERY time.
  • Use as many of your senses as possible when studying as the more you use the better you will remember.
  1. Find strategies that help you learn e.g. acronyms, singing formulae, flash cards etc.
  • Use a reader if they are available or search out software that will read academic readings to you.

Tai Chi

Taxi Subsidy Scheme

Therapies on the cheap

  • The Enhanced Primary Care Program is one whereby a referral by your GP can get you six free appointments each with selected therapies in a year.
  1. Ask about local hospitals which might run something like a ‘land maintenance exercise class’. Generally, they will customise a program for you and then you (or you and your carer) carry these out independently. This is not 1:1 physio but you can use all of the hospital gym equipment and therapists are around if you need to ask a question. One hour should only cost (approx) $10-15 but is not covered by health insurance.
  • If you have some private health cover, check with your health fund because often you will be eligible to some periods of day hospital. The day program gives you 3-5 therapies per day (eg physio, OT, speech, hydrotherapy, relaxation therapy, diversional therapy, exercise physiology) and technically you are signed in as a hospital inpatient for the day and discharged when you leave. This is repeated for your visits the following weeks. Some health funds may limit your visits (eg twice a year in 4 week spurts).

Wheelchair related issues

Speaking and Communication

  • To help with word finding difficulties try doing a cross word each day, say at breakfast. Start out with simple ones and try to do the same paper’s one each time as you will then start to recognise both the style and some of the recurring clues.
  1. Some group members have found that finding a common word is difficult but once that have said it once, they can then find it in their brain again. Reading and practicing talking can help. Carers should try to be patient
  • To improve memory, try to associate a name/word with a picture. (Eg John Smith, pilot)
  • www.speechpathologyaustralia.org.au/
  • If you are aphasic (do not have speech) there are numerous options.
    • Litewriter – a small unit with an onscreen keyboard. It scans and to select a letter you press a button. You spell words out. It can be attached to a switch that you can trigger with any other part of your body.
    • Computer software – you can type input and when you’re finished, press enter and it speaks. You can ‘buy’ an Aussie accent for this software. There are many other accents.

 

     

“I was living and loving life. Just before I turned 26, I had a major and complex stroke / acquired brain injury. I’m in a wheel chair; I speak strangely and have spasms. Life has done a 180. Finding positives has helped and this group is so important for the coping of me and my mum.”

Lara