"Answers
Page for the Polio Questionnaire"
Written by
Tessa Jupp RN for the Post Polio Network of WA
Looking through the
answers to the questionnaires that have been sent in, I pondered about
responding to each individually, then about writing up a sheet to send out,
then I thought - why not put it in the newsletter for everyone to see what they
can do to help themselves - So here are the answers that might help
Many questions are asked so that we can build stats as to what is
happening with our Post Polio population in WA and also so that we can try to
forecast what services will be required now and in the future for polios living
in the community, particularly for Health Dept assistance.
So PLEASE SEND YOUR QUESTIONNAIRE in.
The first parts 1 - 5 are your polio history and the aids you are using
for the purposes of WA statistics.
PRESENT HEALTH QUESTIONS
Here we are looking at general health, not just polio - because this all
has an impact on how polios manage.
6. RESPIRATORY
and SLEEPING
Questions on diabetes, asthma, hayfever, allergies show
auto-immune dysfunction which could pre-dispose to original polio if it was
present then and could impact now if these areas have been weakened by
polio. Often these diseases can be
assisted by increased Vitamin C intake and other antioxidants like Vit
A, Vit E, zinc and EFAs.
The questions in this section relating to sleeping and breathing
problems can indicate sleep apnoea which needs to be assessed by respiratory
specialists experienced with post polio.
The best clinic for this is the Sleep Disorder Clinic with Dr David
Hillman at Sir Charles Gairdner Hospital. If you are eligible for CAEP equipment,
C-PAPs etc can be funded for you through this clinic and they have
experience with polio both at the Sleep Clinic and at Respiratory Medicine at
SCGH.
Sleep apnoea can be increased by allowing yourself to become overtired
or by doing too much during the day,
(extra carnitine may help) eating a large heavy meal at night,
having alcohol at night, indigestion causing reflux, (try taking
a bit of lemon juice or apple cider to alleviate reflux, even after the meal if
you forget to take with meal) sleeping on your back (sleep on side with
legs and arms flexed [foetal position] - may need a pillow behind you to stop
you rolling onto your back when asleep).
If you wake with a frontal headache it is urgent that you get
this investigated as your oxygen levels are dropping.
If pain or restless legs are causing sleep problems, we need to alleviate
these problems. Muscle aches, stiffness,
cramps and restless legs usually improve with extra magnesium and/or manganese
- or have you done too much? Sometimes certain foods create these problems. Arthritic pain responds to daily borax and
gelatine as well.
It may be necessary to look at bedding including pillows
as it is important to keep the head and neck in spinal alignment. Do not sleep with arms behind or above you as
nerves can be pinched and blocked causing pain. Headaches at the side or back of
the head on waking are due to night-time posture problems or spinal
malalignment
7. PHYSICAL
Increasing weakness or muscle wastage indicate something is going wrong. There are a number of things to
consider. Are you getting too much or
too little exercise? Are you building
rest periods into your day so as not to further stress overstressed nerves and
muscles?
Do you need a personalised activity program to maintain aerobic
and cardiovascular fitness. Resistance
(weights and against gravity) and controlled repetitions exercise
regimes need to be determined after a thorough assessment of your polio
capabilities by Jega or a physio experienced with post polio so that weakness
is not increased.
Are you on drugs like beta-blockers for blood pressure or cholesterol-reducing
drugs that can cause further muscle wastage and permanent muscle damage?
Swelling of legs or feet can be caused by inactivity and sitting with
legs down for periods of time. Loss of
muscle can contribute to fluid accumulating in dependent limbs as the
pump action back to the heart may be damaged.
In cases of oedema, potassium levels should be checked by your
GP, particularly if you are prone to hot flushes or overheating, palpitations
or urinary tract infections. Elevate
legs and walk more when and if possible.
Numbness and tingling can be caused by mechanical means such as pinched
nerves (need more B6), due to posture or tight muscles, (magnesium)
or may be metabolic as in low B12 causing macrocytic anaemia.
Muscle twitching, jumping, spasms, cramps, tight muscles are
all signs of needing more magnesium, as well as indicators that your
muscles have done too much exercise. Carnitine
can also assist with energy levels and increase exercise
potential. This includes difficulties
with stairs, steps, falling, tripping, tiring when walking.
Stiffness after sitting and balance problems may be alleviated with extra
manganese, as can other problems due to tendon strain like carpel tunnel,
frozen shoulder etc.
Joint problems that are arthritic, may improve with
supplemental borax and gelatine.
Vitamins B6 and C may also help with inflamed synovial membranes
in joints. Polios are particularly prone
to joint problems due to abnormal stresses caused by uneven walking gaits
and muscle pull. Whilst we cannot
change the polio damage, we can support the joint function by nutritional
supplements as well as splinting and mobility aids like walkers,
crutches, walking sticks, scooters and wheelchairs
Fibromyalgia usually responds to large doses of supplemental
magnesium and Vit C and B6. Tendonitis
is again manganese. Manganese reduces
swollen tendons.
Bursitis and spurs respond to a series of B12 injections three
times a week for 2-3 weeks in combination with extra magnesium and manganese to
relieve the tight muscles and tendons that are causing the problems. This is proven.
Pain in fracture sites can be relieved within 2 days by taking magnesium
to bowel tolerance and a lick of borax twice daily. This combination speeds healing of the
fracture and helps improve bone density.
Vitamins D and A and gelatine are also required for bone density. As polios are more prone to falls from
instability, greater and earlier use of mobility aids should also be
considered.
Backache can be caused by weakened polio muscles, both back and stomach
muscles. Carnitine, magnesium and
manganese can help. Degenerative spinal
damage can also occur. Borax and
gelatine can assist. B6 for trapped
nerves and sciatica. Scoliosis from weak
polio muscles may require surgical intervention or spinal supports like corsets
and body braces. Breathing can also be
compromised due to scoliosis and kypho-scoliosis.
Unusual chest pain that is not indigestion (need lemon juice) or heart
(ECG and bloods normal) has been found to disappear when polios are on
carnitine and magnesium. This would
indicate the most likely cause is muscular.
Fatigue - common in polios, we have found this usually improves with
carnitine. Other causes also need to be
eliminated so have your GP check for iron, B12 and folate anaemias; thyroid
conditions, haemochromatosis, chronic fatigue, cancer, or other medical
treatments and drugs.
Urinary problems: although there
have been occasional reports of kidney damage due to polio, these are
rare. Quite a few polios will remember
difficulties with bowels and bladder at acute polio however and the potential
for weakness re-occuring in these areas is there. Poor stream and incontinence have been
reported to improve on carnitine. Pelvic
floor muscles can be strengthened by stepping gently on a mini trampoline as
well. NB
Have something to hang onto close by to prevent falls.
Urinary tract infections and cystitis indicate low potassium levels and the
old remedy used to be a foul taste mixture of Pot. Cit. (potassium
citrate) These days Slow-K usually does
the trick but now we need a doctor’s script to buy it. Failing this, good dietary sources of
potassium are found in drinking the water from boiled potato skins - can use
potato water to make soups, stews, gravy, white sauce.
Bowel Problems: again common at
acute polio and pain killers aggravate.
Taking magnesium and Vitamin C to just below the point that give
diarrhoea will eliminate constipation.
Irritable bowel, indigestion, gastric reflux improves with taking a
teaspoon or so of pure lemon juice or apple cider vinegar with
all meals for some months. Ulceration of
the gut lining can be healed with glutamine.
Carpel tunnel, tennis elbow, golfers elbow, frozen shoulder, pulled or
torn tendons can all be remedied by taking extra manganese, often
high dose for 1-2 years but definitely reduces pain and eventually effects a
cure. Cause in polios often due to using
arms to “walk” on ie walking sticks, crutches, frames, manual
wheelchairs.
8. DAILY LIVING
Can you use public transport? - If your disability precludes you using buses
and trains, even if only because you have trouble walking the distance to catch
it or when you get off to go to your destination, you could be eligible for half
price taxis (75% discount if in a wheelchair). Apply through Dept of Transport. If you are still working or doing voluntary
work for at least 8 hours a week, and even if you have a car, you may be
eligible for a small weekly payment - Mobility Allowance from Centrelink. Mobility Allowance can also cover some
ongoing costs like new tyres and batteries and helps with sales tax exemption
on purchase of new vehicles. People with
a Mobility Allowance receive a Health Care Card as well, but only if still
working so this can help with scripts, doctor’s visits and other
concessions. Check it out with
Centrelink.
Struggling to do gardening, housework, keep working: There
are services to assist you - HACC - local councils, Silver Chain, People Who
Care, Volunteer Taskforce.
Need Home Alterations: Ask your GP to
refer you to your local hospital OT Dept for a Home Assessment. A lot of this including chairs, can be done
free or for a small fee.
Shoes, caliper, seating not quite right? - Orthotics and the Pressure Clinic at Rehab
Engineering at RPH - SPC can help but if you have a pension or health care card
you must now be assessed by your local hospital CAEP co-ordinator first for
funding. You may have to argue to be
referred back to Shents but they have the expertise for post polio. But if you are polio and do not have these
health cards then you can still just front up at Orthotics for service as
usual.
Lack of finances preventing you getting equipment? There
are some financial hardship clauses that may help you get needed
assistance. Ring the Polio Office and we
will make enquiries for you. Don’t
wait till it is too late!
Leg or arm shorter. Did you know that
from our questionnaire stats we can tell
you that about one third have arms affected by polio and two thirds had legs
affected. Some have weakness in both
arms and legs.
Hip and knee replacements: This is common
in polios but surgery is usually needed for the good side as it has carried the
weaker polio side for many years and is now worn out. If you still have sharp pain or twinges, some
extra Vit B6 200-400mg daily may solve these problems.
Difference in shoe sizes requiring you to buy 2 pairs to get a pair to
fit. You may still get some assistance
from Orthotics to purchase an odd pair of shoes and for build-ups. Otherwise, we have a Shoe Bank of
odd-sized shoes at the Polio Office and you are welcome to come and browse and
pick up the right combo free or for a donation.
Occupation: As well as
being able to see that polios have been well represented in most parts of the
workforce, despite their disabilities, it also shows how much stress you have
placed on your body over the years. So
no wonder we are having problems now. We
need to be a bit kinder to ourselves in future.
Your future is in your own hands.