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.
- Do’s and Don’ts
- Drugs (non-MG related)
- Eating & Swallowing
- Family, Friends and Peers
- House Work
- Information Sheet
- Medicines for MG
- Personal Hygiene
- Support Groups
- Visual Difficulties
- 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.
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 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’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.
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
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.
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
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.
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.
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.
- 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!
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.
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.
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).
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
- 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.
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.
- 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).
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.
- 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.