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The first step to managing your condition is
to accept that you have it. From then on you can move forward.
We have listed below some helpful
hints on day to day living with MG.
Bathroom
Do's and Don'ts
Drugs (non-MG related)
Eating & Swallowing
Education
Emergencies
Family, Friends and Peers
House Work
Information Sheet
Kitchen
Medicines for MG
Neurologist
Personal Hygiene
Support Groups
Shopping
Visual Difficulties
Bathroom
· Install grab bars in
the shower, near the bath and near the toilet. If showering
is tiring, use a chair in the shower and in the bathroom in
general so that you are not standing whilst shaving, brushing
your teeth, etc.
· Consider installing shower heads with flexible hose.
You can then bring the shower head closer to your body, allowing
faster rinsing.
· Replace old fashioned tap spindles with tap mixers.
A mixer is one handle that turns water on and off and controls
temperature with the one easy movement (the old fashioned tap
heads not only need a strong grip to operate, but require the
strength of Hercules to turn the water on and off!)
· If possible, have the shower recess separate to the
bath - climbing out of a slippery bath could be challenging
and dangerous if you have difficulties swinging your legs over
the edge.
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Do's and Don'ts
An early lesson that all Myasthenics
should learn is that Myasthenia and emotion are very poor bedfellows.
Patients must accept the disease and learn to live with it and,
at the same time, try to arrange their lives so that they avoid
situations leading to distress, anxiety, emotional crises, etc.
DO'S
· Do adopt a positive attitude,
and remain cheerful.
· Do visit your doctor at regular intervals. It is in
the nature of MG to cycle a little.
· Do have a system for remembering to take your drugs.
· Do take a warm drink, or biscuits, or a snack with
your tablets.
· Do cut down on alcohol and tobacco. Better still, cut
them out! Both can exacerbate the disease.
· Do eat sensibly and drink plenty of water.
· Do get plenty of rest.
· Do remain within your capabilities, pace yourself,
learn to accept your limitations, and when you're tired, REST.
· Do use any labour saving devices you can get.
Be sure that any doctor from whom you seek treatment for any
illness fully understands your condition.
· Do use eye drops and eye gels to relieve your eyes
from becoming dry. Failure to close the eyes completely, sometimes
leading to poor blinking, can result in the loss of the "windshield-wiper
effect". Dust and dirt, therefore, are allowed to accumulate
in the eye. If the eyes do not close completely during sleep,
the cornea (the clear membrane in front of the eye) dries out
and the eyes become red, crusted and hurt. Use eye gels to lubricate
the eye, and patch the eye in the closed position before sleep.
· Do carry an identity card or disc.
Remember symptoms vary in kind and
severity from day to day. We are adversely affected by weather
changes, and extremes of heat or cold. We can also be adversely
affected by extremes of emotion. Ideally the Myasthenic should
live an utterly placid life in a permanent temperate climate,
but as we are all human being we have to make the best of what
life can offer us.
DON'TS
· Don't battle grimly on,
determined "not to be a nuisance". If you can't manage
something, swallow your pride and ask for help.
· Don't rush. If it looks like you're going to miss the
bus or train, go ahead and miss the darn thing. There'll be
another.
· Don't try to exercise affected muscles beyond normal
usage, because this leads to needless exhaustion.
· Don't take any medication unless you have checked with
your doctor first.
· Don't get into highly stressed or emotionally charged
situations. Live as placid a life as possible.
· Don't get too hot or cold. Temperature extremes are
weakening.
· Don't have very hot baths. If you can, have a shower.
· Don't try to eat huge, heavy meals. Little and often
is easier and more sensible.
· Don't let yourself go. Remain smart and well groomed.
· Don't forge that even athletes go tired, so REST.
· Don't fret if your MG takes a dip. Myasthenics have
their ups and downs just like everybody else. If you feel down,
call your doctor. Try not to become downcast or depressed, remember
others are worse off and tomorrow is another day.
Acknowledgement: Reproduced by kind
permission of the British Association of Myasthenics.
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Drugs (non-MG related)
You should always check with your
doctor before taking any medication that is not related to your
MG as certain drugs will make your MG worse. Neuromuscular blocking
drugs are obviously drugs that myasthenics should be cautious
of, but even the simple over-the-counter common cold medicines
can have adverse effects on MG (they could contain quinine, which
is also in tonic water!). In some cases, these drugs can even
unmask the condition in an undiagnosed myasthenic by exaggerating
MG symptoms.
You can find a comprehensive list
of drugs to be wary of at www.mgauk.org/main/mgdrugs1.htm
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Eating & Swallowing
It is important for the myasthenic
to maintain a healthy, nutritional diet. At times, the myasthenic
could experience chewing and swallowing difficulties. It is important
to see your doctor, or a dietician in the management of your diet
when you are experiencing swallowing difficulties. They will recommend
food types and consistencies.
· large meals tend to cause
fatigue, so eat more, smaller meals.
· Eat warm rather than hot meals as heat aggravates MG
and could affect your ability to swallow. Sip a cold drink during
a hot or warm meal.
· Meat should be ground or cut into small pieces to make
chewing and swallowing easier. Cook meat well to allow for easier
breakdown whilst chewing.
· Avoid foods that require a lot of chewing (eg tough
meats).
· If chewing is difficult, replace fruit and vegetables
with fresh juice drinks so that nutrition is retained. Mash
vegetables. Thick soups are easy to manage.
· Rest your jaw between mouthfuls.
· Avoid dry foods that easily crumble into fine particles
- the particles may get into the windpipe causing chocking.
Add liquids such as gravy to keep foods moist.
· Avoid hot, spicy foods.
· If you do find yourself with a mouthful of food and
unable to swallow, then spit the food out (even if you are in
public). Sometimes, supporting the neck whilst swallowing assists
in getting the food down - apply pressure to the top of your
neck by holding your index finger and thumb at either end of
the base of your jaw (but don't go strangling yourself!).
· Alcohol could aggravate MG, so it is best avoided or
at least kept to a minimum (especially with meals).
· Try soft boiled eggs as a soft yolk is easier to swallow
than a harder, crumbly yolk.
· There could be times where swallowing is dangerous
and tube feeding is preferred. This will be determined by your
doctor.
· Some foods, such as lemons and tonic water (because
it contains quinine), will aggravate MG and should be avoided.
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Education
Knowledge eliminates the mystique
of MG. Many myasthenics suffer the condition for years before
being successfully diagnosed. The prize for diagnosis should be
education - this way you have the chance to be informed on treatment
choices. Sources of information include:
· your neurologist
· myasthenia gravis associations (they are usually listed
in the white pages, or with government health organisations)
· the internet - a world of information!
· reference books
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Emergencies
Educate family and friends on difficulties
that you may encounter in a crisis - you might wish to provide
a list of symptoms that might be suffered so that they have a
checklist on questions to ask during the crisis (eg trouble breathing,
unable to swallow, choking, unable to talk, etc). Then develop
a system of communication if you are unable to talk (e.g. using
telephone receiver (1 click for "yes" and 2 clicks for
"no"). .
Also available for crises situations
are electronic call devices which are monitored by third parties.
You wear the device around your neck, and in an emergency you
simply press the button on the device. This communicates with
a box in your house which automatically sets off an alarm at the
monitoring centre. The monitoring centre will then contact your
nominated party to alert them to the situation.
Wear a medical alert bracelet detailing
your condition and the medications you are taking, and carry an
MG information sheet with you in case you suffer a crisis outside
of your home. This will save doctors valuable time in treating
you. Take the information sheet to the hospital with you as hospital
staff may not be familiar with MG. Make sure that you hand over
the information sheet to the doctor or nurse looking after your.
If you are able to talk, provide as much information as possible
on what it is your are experiencing (e.g. difficulty swallowing,
difficulty breathing, tightness of chest), your limitations, and
what previous treatments you received in a similar crisis. If
you are unable to talk, write down the problem on a note pad or
have family describe the problem. It is crucial that the symptoms
be thoroughly explained to hospital staff.
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Exercise
Exercise is important to keep muscles
and bones in shape. So exercise if you can, but take it easy.
· Myasthenics on steroid
based medications are prone to weight gain, and so exercise
might help in controlling weight.
· Whether your choice of activity is walking, swimming,
cycling, playing bowls, going to the gym, or playing tennis
(yes myasthenics can participate in all of these activities),
do not over do it.
· Take medication if required prior to the session, ensure
that your body is adequately hydrated, and remember to not over
exert yourself.
· It is probably best to avoid outdoors when there extremes
in weather temperature - they play havoc with a myasthenic’s
muscles.
· Listen to your body - if you start suffering fatigue
of limb or have difficulty breathing, then stop and rest.
· Do not expend energy on exercise unless you feel that
you are up to it. Do not be embarrassed to say "no"
to well-meaning friends.
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Family, Friends and Peers
Understanding of your condition
by family and friends is important in the management of MG. You
may look fine to all and sundry, but at the same time feeling
terrible. Educate those around you by providing literature on
the subject (or refer them to this website!). You could even take
them along to your local MG Association meeting. Depending on
the nature of your job, it may help to tell your manager and/or
work peers.
If your condition is particularly
bad and you are often alone, arrange a roster where family and
friends check on your regularly. Myasthenics must learn to accept
assistance. There are going to be times when a helping hand will
come in very useful.
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House Work
· Forget the big Saturday
cleans. Break up house work into manageable smaller tasks, with
plenty of rest between tasks.
· Ask family and friends for assistance, and learn to
accept assistance when offered.
· Plan your routine so that you avoid unnecessary repetitions.
· Use a cart or basket on wheels to carry things from
one part of the house to the other.
· Use energy saving devices - electric appliances and
power tools over manual appliances.
· Avoid chemicals around the house where possible - some
products may contain agents that adversely affect myasthenics,
others cause allergies to play up. There are now many chemical
free environment-friendly products on the market - good for
you and good for the planet!
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Information Sheet
If you are susceptible to myasthenic
crisis, it is a good idea to carry some information on MG. If
you collapse in the street, with talking and breathing difficulties,
the information sheet provides prospective good Samaritans with
immediate means of assistance. The information sheet can include
the following details:
· The name of your condition
· MG symptoms.
· Names of your neurologist and GP.
· Names of all medications you are currently taking.
· Symptoms of Mestinon overdose.
· List drugs or treatments which worsen MG (see section
on Drugs (non MG related above).
· Telephone numbers of two friends or relatives.
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Kitchen
The aim in the kitchen is to minimise
effort. To achieve this, you can:
· Enlist the help of family
or friends to assist in general house work, including cleaning
of the kitchen.
· Use labour saving devices and products (electric blenders
and mixers over manual, vacuum over the broom, ready made over
start from scratch).
· Use a tap mixer rather than the old-fashioned tap spindles
- a tap mixer can control quantity of water flow and temperature
in one easy movement.
· Place often used utensils and crockery in easy to get
to locations so that you are not moving other things to get
to them.
· Use smaller, easy to manage storage containers (heavy
containers could deplete your energy). Avoid screwtops.
· Break up housework into smaller activities - do a little
each day rather than one monumental effort that will leave you
bed ridden for the next two days!
· Ensure all of your cupboards, drawers and windows are
easy to open and close.
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Medicines for MG
· If the medication upsets
your stomach, take it with food. If you have difficulty swallowing,
try liquid forms. · If the medication is making you feel
terrible consult your doctor about alternative treatments.
· Take medications at regular intervals. Use an alarm
to remind you. It is also handy to keep a schedule of your medication
regime beside your medicines - it will help in times when you
are unable to communicate.
· If you are on Mestinon, and feel weak upon waking up,
try Mestinon Longspan before going to bed - the tablet takes
longer to break down and could offer relief first thing in the
morning. Alternatively, keep your medication by your bedside
for consumption upon awakening.
· Keep your eye on the use by date of all of your medication
- dispose of any medication that passes the use by date (medicines
lose effectiveness in time and old medicines could be dangerous).
· Only alter medication doses after consultation with
your doctor.
· Keep some medication in your handbag (or wallet) and
at work.
· Do not take other drugs without consulting your doctor,
as some drugs may aggravate MG, or could be dangerous to mix
with your MG medication. Even over the counter medicines could
prove harmful (e.g. cough medicines contain relaxants).
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Neurologist
In Australia, your GP will usually
recommend a neurologist to you (although you can ask your GP to
refer you to a specific neurologist).
It is important to find the right
neurologist for you. The right doctor could be somebody who:
· is experienced in the treatment of MG
· is happy to answer all of your questions
· listens to your experiences and your concerns
· discusses various treatment options with you.
Usually, the myasthenic’s
first visit to the neurologist is to either diagnose the condition
or to confirm the suspicions of a cluey GP. To assist the neurologist,
take a list of all of your SYMPTOMS with you, as well as any medical
records that you believe may be relevant.
After positive diagnosis for MG,
the neurologist will:
· explain the condition
· explain treatment options
· recommend a treatment strategy.
Many people’s reaction to
being told they have Myasthenia Gravis is "I have WHAT??".
It is not a common condition, so ask questions. If it helps to
remember what you are being told, make notes or ask your doctor
to make notes.
As MG symptoms differ from person
to person, reaction to treatment can also differ. If you are not
sure about your treatment, talk to other myasthenics about their
treatments and their experiences. Better still - tell your neurologist
(they do wonderful things, but they cannot read minds). If you
find a particular treatment is not working, or is not suitable
to your situation, then talk to your neurologist about alternate
treatments. Talk to your neurologist if your condition worsens.
If you are unhappy with your neurologist,
ask your GP to recommend somebody else. You can also contact an
MG clinic (Sydney’s MG Clinic is located at Concord Repatriation
and General Hospital (ph 02 9767 6416, fax 02 9767 7807).
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Personal Hygiene
· For females, opt for
a low maintenance hair style (something that does not require
a lot of blow-drying and brushing). If high maintenance is a
must, then consider regular visits to your hairdresser or enlist
the help of family and friends to help with your 'do.
· If washing your hair causes fatigue of your arms, have
somebody help you (it would be handy to have a shower head with
flexible hose for this purpose).
· Try an electric toothbrush.
· Try an electric shaver. If shaving causes fatigue of
the arms, have somebody help you.
· Avoid hot baths. Keep showers short and warm (not hot
as heat aggravates MG).
· Sit to brush teeth, blow dry hair, shave, etc. if you
are tiring easily.
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Shopping
Shopping can be a daunting task.
To minimise its impact:
· Wear comfortable clothes
and comfortable shoes, you don’t want to be fussing with
your clothing as well as your muscles!
· If the shopping expedition is to be a long one, ensure
that you take medication beforehand, and that you have medication
with you. Make sure that you have a good rest before you leave
the house.
· If you expect to be carrying heavy items such as grocery
shopping, then it is probably best to take somebody with you
to carry the groceries or push the trolley. At home, unload
the light items and leave the heavy items for others to deal
with. If you do not have anybody to help you with groceries,
consider using a lightweight shopping cart (they were popular
with the elderly years ago, but are a fantastic (and environment-friendly
alternative to plastic shopping bags).
· If you can, use private transport - the use of public
transport can be a battle in itself (particularly climbing onto
buses, or managing stairs at the train stations).
· If you are not able to venture outside, consider internet
shopping. There are now a number of stores and services that
bring groceries right to your kitchen. Coles and Woolworths
have such services, or try www.greengrocer.com.au.
· Air conditioned shopping centres are more comfortable
and convenient than strip shops - they provide for plenty of
resting spots and most have a concierge service to assist if
you get into difficulties (eg arranging taxis, and wheel chairs
may be available if you have difficulties walking).
· Obtain a handicapped parking sticker if you suffer
from walking or other difficulties.
· If it will help, use a walking aid (or those neat scooters
to get to get around).
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Support Groups
Support groups and associations
are beneficial in that:
· members normally can
empathise with your experiences.
· you will realise that you are not alone in your battle
with MG.
· you have the opportunity to share experiences and ask
questions.
· you have the opportunity to help others and make new
friends.
MGNSW meets every three months -
see "About Us" section on
this website for contact details.
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Visual Difficulties
· If double vision is a
problem, DO NOT DRIVE. If droopy eyelids also affect your vision,
then you should also avoid driving.
· Use an eye patch while reading or watching TV to relieve
double vision. Alternate the eye patch from one eye to the other
to avoid eye strain.
· Rest your eyes before leaving the house.
· Outdoors, use sunglasses and sun visors to keep glare
away from your eyes.
· Some myasthenics suffer from dry eye as they are unable
to fully close their eyelids when sleeping. To alleviate the
problem, use eye lubricant - before going to bed and tape your
eyes closed.
· If you are having difficulty keeping your eyelids up,
then tape them open (probably not the best look outside of the
home!).
· Have your eyes tested at regular intervals. Inform
your optometrist of your condition (so they can hold up your
eyelid during eye examinations). - This is especially important
for myasthenics on steroid based medication to assist in the
early detection of glaucoma.
· MG does cause blurred vision, so be aware of this when
having eyes checked.
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