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"Jega" from WA is Keynote Speaker
To Tessa,
Thank you for
introducing us to JEGA!! What a great conference we had in NZ. I believe that
that was the best “Hands On'“ experience that our members
have ever had. With just 54 at the
Friday and around 36 on the Saturday it was really good value for those who
took time to attend.
Such a
knowledgeable lady to boot. Ray
Wilson, President of the NZ Post Polio Society.
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DVDs of
the NZ Conference are available to order over the
Internet from www.faithnet.co.nz or by writing to Faithnet PO Box
12357 Hamilton NZ. Set of 4 discs
for NZ$80 plus postage. There
are 3 discs with Jega, one describing our LED clinic, one showing practical
polio assessments on 2 volunteer patients and one demonstrating pool
exercises with 3 polio volunteers. The
other disc has a talk by each of the other speakers, Dr Jurian de Groot on
PPS and David Guest on equipment. This
set of DVDs is well worth having. Jega spoke
along similar lines at our recent AGM.
The following is taken from both talks. Tessa Jupp RN |
Jega has been
the “prime mover” of the Late Effects of Disability Clinic
(LEDC) at
Preventing falls
Jega is
really concerned about the potential for falling and says - “Pain can
make you fall. It only takes one fall
to break a bone. Polios need to
concentrate on walking and it only takes a minor distraction to cause a fall.”
Over the
years, Jega has realised that staff should never try to change the walking
styles that each polio person has developed.
She says “You are more likely to fall if you are not using
these trick movements which are now programmed into your brains.” Jega is aiming to get us back to where we
were 3-5 years ago so would like to see people sooner, before they run into too
many problems so that she knows how good you were and how you managed before.
Preparing for Surgery
Tell Jega as
soon as you are put on the waiting list for surgery. She would like to be
involved with your physio/OT/surgical team preparation meetings months
beforehand so that plans are in place for when you leave hospital.
An example
Jega used is where she was called in for someone whose legs were weak or
paralysed and needed to use a goose-neck to move her position in bed. The ward staff would not allow her to use the
goose-neck saying they are old-fashioned and could cause shoulder injury. However Jega was able to explain that it was
necessary for this polio person, as she had managed this way for a long time. And so the problem was happily resolved.
Plans also need
to be made for how you shower, move around in the house, use the toilet, get
the shopping done etc once you go home.
It is hospital policy everywhere these days to get the patient out of
hospital in a very few days, but for polios, staff need to know that it will
take longer to recover for polios and going home too soon could result in a
return to hospital with a fracture from a fall that could have been prevented
by taking time to make sure your balance is stable.
Other
problems that may occur are that the staff may expect you to be able to hop on
the other leg post surgery, but this may not be an option for you if that is
your weaker polio leg.
Staff may
also try to alleviate stiffness, not realising this is being used to compensate
for weakness and to maintain balance.
Trying to change this is more likely to lead to falls.
Shoes and Calipers
Some people
do need soft shoes and soles to enable them to grip the floor with their toes
to maintain their balance. Others may
need the support of firm ankle leather to maintain foot alignment and ankle
stability. It depends on the individual. It is also important to have shoes the
correct size for each foot as you are more likely to fall over the extra length
on the shorter foot if you don’t get 2 pairs of shoes to get a fit.
Off-the-shelf
orthotics don’t work for polios as they are made for normal musculature
not for the muscle wastage common in polios.
The wrong caliper, orthosis or shoes can cause loss of sensation in the
leg or foot, pins and needles and greater likelihood of a fall. They need to be specially made and fitted to
polio legs. Shoes and boots that are too
heavy will make the foot and leg tired and weaker too.
When being
fitted for new calipers and orthosis, you should have a new muscle assessment
by a physio to see if changes are needed before the new caliper is made. The aid needs to be fitted to the person not
the person to the aid. Don’t try
to change the person. It won’t
work.
Jega
encourages us to speak up for ourselves.
Don’t let others dictate to you what you need. You know yourself better than anyone else.
Aids and Equipment
Jega says
that polio people should consider the use of aids sooner rather than later and
admits there is a general reluctance to do this. She says that walking sticks should only be
used for confidence when walking. If we
are using a walking stick or frame to lean on or to maintain our balance, then
we are too weak to use it. A walking
stick will slow us down. It will create shoulder problems from using it to take
our weight on it. So we need to advance to the better security of an elbow
crutch (or two), a walking frame with a seat rather than a Zimmer frame or to a
wheelchair or scooter.
If our arms
are getting weaker then we should use an electric chair or a scooter - they are
getting cheaper these days. But the
wheelchair needs to be fitted to the person too. The base and length of the seat need to be
right as do the height of footrests and armrests. And Jega is now arguing the need for both
manual and powered chairs, and spare calipers and shoes to use when our others
are being repaired.
Exercise
Jega has
found that polio muscles have a better holding capacity than the ability to
move. This is different to the frail and
aged who can’t hold or maintain position.
When polios are moving, they can’t change direction. They must stop to change pathway direction,
otherwise they are likely to fall.
Muscle
overuse causes weakness and rapid fatigue of muscles. If at the end of any activity we feel tired -
we have done too much.
Other overuse signs are
Exhausted next day
Muscle or joint aches
A creepy crawly sensation
Jumping legs
Legs that feel like “jelly” or like “lead
boots”
Sometimes
just daily living tasks can be too much exercise. Spread tasks out over the day or over several
days. Do less at a time. Take frequent rest breaks. Do something you enjoy.
Muscle Training
Everyone’s
capacity is different and exercises need to be tailored to individual muscle
strengths and weaknesses.
General rule is
find the maximum that you can do in one go then work
at 50% of that if some weakness and at 70% if no weakness in that muscle
Rest for half the time it takes to exercise
Always stop before you feel tired
Train with caution, it is easy to cause a strain
Increase by small amounts every 2-3 days
If feeling unwell reduce amount of exercise
Don’t exercise if you are tired
Group Sessions
Polios don’t
do well exercising in groups. They feel
obliged to keep up so as not to hold the others back. Polio people do better with individual
programs, working at their own pace.
This can be done in small groups but without the competition element.