Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I posted something like this on Advice, but thought it might be helpful to post it here so it might be picked up more easily for those searching for ways to modify their homes, especially to prevent falls in older people with MG.
My father had seronegative MG at 80 and the falls were a huge problem for him, since he got little warning. He learned to enjoy his crutches and cane--wielded them with great power, but was not as pleased with the walker and wheelchair. Nighttime was the most dangerous for him. Here are some things we found helped:
Putting the low bed on blocks with something to hang onto nearby to make it easier to get in and out. (Dad also had a trapeze for a time to help get to sitting.)
Removing rugs from hardwood floors and replacing carpeting with hard flooring or a tight fibered carpet so tripping was less likely and it was easier to move from room to room with the walker (and the wheelchair).
Removing raised thresholds or replacing them with flat ones.
Good lighting and accessible switches, which might just be a flashlight in some cases.
Steps of course are a problem and eventually, my parents had a lift in the garage. Ramps are fine for wheelchairs, but not so easy for walking.
Modifying the bathroom: high toilet, hold bars and a seat in the shower. Towels easily accessible so no walking with wet feet. Here we have a big claw foot tub (that came with our 100 year old house) that Dad loved, because with his upper body strength it was easy for him to get in and out and it had a nonslip bottom which was really the worn pock marks from years of use.
Large doorways or smaller maneuverable wheelchairs so less transfer.
Some of these modifications are more expensive than others and, if needed, the Muscular Dystrophy Association can be a help in addition to insurance. The biggest savings for insurance is to keep us out of the hospital and some modifications and home assistance, including physical therapy, may be covered.
This, of course, is when good medical management and exercise are not enough or during periods of exacerbation. But, even if the MG is mild, it is worthwhile to consider at least some of the easier, less expensive modifications early and certainly if you are looking for a new home or remodeling.
If there are other modifications you have used or have thought about, please add them. Thanks, b.
My father had seronegative MG at 80 and the falls were a huge problem for him, since he got little warning. He learned to enjoy his crutches and cane--wielded them with great power, but was not as pleased with the walker and wheelchair. Nighttime was the most dangerous for him. Here are some things we found helped:
Putting the low bed on blocks with something to hang onto nearby to make it easier to get in and out. (Dad also had a trapeze for a time to help get to sitting.)
Removing rugs from hardwood floors and replacing carpeting with hard flooring or a tight fibered carpet so tripping was less likely and it was easier to move from room to room with the walker (and the wheelchair).
Removing raised thresholds or replacing them with flat ones.
Good lighting and accessible switches, which might just be a flashlight in some cases.
Steps of course are a problem and eventually, my parents had a lift in the garage. Ramps are fine for wheelchairs, but not so easy for walking.
Modifying the bathroom: high toilet, hold bars and a seat in the shower. Towels easily accessible so no walking with wet feet. Here we have a big claw foot tub (that came with our 100 year old house) that Dad loved, because with his upper body strength it was easy for him to get in and out and it had a nonslip bottom which was really the worn pock marks from years of use.
Large doorways or smaller maneuverable wheelchairs so less transfer.
Some of these modifications are more expensive than others and, if needed, the Muscular Dystrophy Association can be a help in addition to insurance. The biggest savings for insurance is to keep us out of the hospital and some modifications and home assistance, including physical therapy, may be covered.
This, of course, is when good medical management and exercise are not enough or during periods of exacerbation. But, even if the MG is mild, it is worthwhile to consider at least some of the easier, less expensive modifications early and certainly if you are looking for a new home or remodeling.
If there are other modifications you have used or have thought about, please add them. Thanks, b.
Be safe,
Gail
Your ideas are all superb and provide good guidance for any aged person at risk for falls.
As I read through your ideas, though, I felt a small pang. I felt that I have been asymptomatic for nearly four years. Aside from occasional mouth weakness for which I'll take 30mg of Mestinon, I really have no other MG symptoms. The pang I felt was fear that I would EVER go back to a place like I was for three years before I went into a coma. Those three years were he!! on earth. Choking was a daily hour-long ritual. Not being able to eat or walk was my way of life. I don't want to ever go back there again.
My hope is that this forum is a place for old-timers with the disease, who are either in remission or controlled by drugs, can work with folks who are still symptomatic. I figured that once under control, always under control...just keep doing what you are doing to stay there.
I hope I'm right.
Curt
Knowing about any set back helps us to rest when we get a hair worse. I am finding as I get better I push myself more because I am used to it. Kind of like dragging a heavy ball. Next thing ya know you can skate with it. But iwth this disease we have to stop and rest. I am finding that resting is harder every day.
Ann
I couldn't agree more, Ann. We have the power in us - and the therapies available to us - to assure the we never have to trudge along this difficult path again. I get so personally frustrated when I read about someone's struggle with this disease and learn that they are not taking advantage of EVERY drug or therapy we have at our disposal. I just don't get it.
I discussed my frustration with a close friend whose 30-something child was diagnosed with cancer last year. They immediately determined to get well again. Doing so meant going through chemo and invasive new technologies. It also meant taking steroids, even though they knew all the risks - as do we - associated with taking them. But they kept focused on outcomes, not short-term side-effects. They took the bitter pill. Today, they are well on the road to recovery.
Why do MG-ers fight so hard? Why do they fool around, avoiding the hard drugs which will heal them, or at least put them in a better place so they will be less at-risk?
I'm stumped by it all. I'm the guy who was in a coma and I'm the guy who has lived mostly symptom-free for nearly 4 years because I made the choice to get well at the risk of nasty side-effects of some of the drugs we need to get well.
Curt