LIVING WITH Myasthenia Gravis

There are many steps you can take to work with your illness. Depending on how myasthenia gravis affects you personally, there may be times when these ideas come in handy.

  • Safety at home
  • Helpful tools
  • Set your own pace
  • Exercise
  • Nutrition
  • Tips for eating and swallowing
  • Vision issues
  • Tips for getting dressed
  • Medical ID jewelry
  • Wallet card
  • Travel tips

Safety at Home 

If you feel weak or unsteady, let someone else change the light bulbs. Skip the shower, and opt for sponge baths.

If you live alone and feel very weak, ask someone to check in on you.

Do what you can to avoid falls. Put away throw rugs. Keep walkways and stairs clear. Clean up spills promptly. Don’t wax floors.

In the event of a power outage, keep a flashlight handy. Also keep a working telephone available.

Pay attention to the expiration dates of your medication. Throw out old medications.

PMWO operates worlds largest mobile plasmapheresis network in Pakistan from Peshwar to Karachi & Quetta

Set Your Own Passion / Morale

Physical stress and emotional stress can worsen MG symptoms. With this in mind:

Don’t rush. If you’re going to be late, what the heck? Be late.

Learn to ask for help when you need it. Be direct and specific. (“I need a ride on Tuesday at 10 a.m.” “Please don’t hold my arm; I’d rather hold onto you.”)

Get plenty of rest. You may need more sleep compared to pre-MG times.

Build naps into your day without guilt.

Rest your eyes regularly while reading or working on the computer.

Learn what triggers your myasthenia. Can you avoid it? Can you rest before or after?

Learn strategies to handle stress—for instance, special breathing or imaging techniques.

Don’t give up the things you love—yet. If myasthenia gravis is forcing you to stop gardening, golfing, biking, or whatever—it may be temporary. For example, can you focus on several planters instead of a larger garden?

And hey, tomorrow is another day.

Helpful Tools

When your MG is active, these items might be helpful.

Getting Around

A lightweight cane can offer support.

Use a city shopping cart or wheeled luggage cart for shopping at the mall. You can use it to bring things to and from the car, also.

A handicapped parking sticker, decal or license plate makes your walk shorter when doing errands.

Use the shopping scooters available at the grocery store.

Consider a chair lift if your stairs keep you from getting around the house independently.

For Yourself

A properly-fitted removable cervical collar can support your neck, for instance when you write, use the computer, prepare dinner or pay bills.

Tape up your eyelids. Your eye doctor may have light-adhesive tape that temporarily keeps your eyelids from drooping. Or try silk tape that’s used in hospitals.

If your breathing is weak, your doctor may prescribe the use of a C-PAP (or Bi-PAP) machine. While you wear a mask, the C-PAP forces regulated puffs of air into your lungs, giving your breathing muscles a break. You can sleep with the C-PAP, and use it as needed throughout the day.

In the Kitchen

Electric appliances such as an electric can opener and electric mixer can conserve your energy.

Put the things you need within easy reach. Avoid getting down on the floor or up on a ladder to get what you want.

Choose the medium or small containers at the store. Avoid the discount sizes that are too heavy to lift.

Lightweight plastic dishes and lightweight silverware are surprisingly helpful.

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In the Bathroom

Install secured grab bars in the shower and bath. Not sure where to put them? Area building codes might give you guidance.

Use a plastic shower chair. Check second-hand resale stores to reduce costs.

Try a flexible hose attachment for the shower head, so you can sit while washing.

Use railings for the toilet. Some attach to the toilet itself and can be used temporarily.

Exercise

“Exercise is the best doctor you can ever have!”

Most simply put, exercise within your limits is absolutely recommended if you are able. Don’t exercise if you’re weak.

24 hours service

PMWO provide 24 hours fast and speedy mobile plasmapheresis service for the clinical management of critical patients with GBS and Myasthenia Gravis

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PMWO solved medicines problem permanently and manufactured world’s cheapest medicine in Pakistan for MG patients.

Growing Network

develop contacts with MG and GBS/CIDP organizations abroad to share information, views and experiences to discover the cure of MG

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PMWO has established a National Myasthenic Drug Bank for the distribution of Medicines, to poor patients of Myasthenia Gravis and GBS

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