Planning for the Party

The days are getting shorter. Families and friends will be getting together for picnics and end-of-season celebrations. The continuing threat of COVID makes the option of outdoor social events more attractive to people who might be taking immunosuppressants. With a little planning we can make a great transition to fall.

But as my hubby has gradually learned to live with myasthenia gravis (MG), there are things we now do to prepare that others might not think about. Maybe you have some tips too. A little forethought will make our fall a lot more pleasant.

Comfortable seating

One thing that seems to be important for him outside is seating. Hubby can be a little unstable, needing to push up hard from a comfortable chair. Those mesh and aluminum folding chairs flip easily. They just don’t work. Neither do most of the "chair in bag" devices. He needs to find something heavier and more stable.

We have better chairs at home (and when we entertain we make it really clear he has first "dibs" on it.) When we go to a friend’s, we ask in advance. The hardest situation is an outdoor concert or athletic event. We do have a wood folding chair that is a lot better than most, but it’s heavy to schlep from the car.

Bleachers are ok for a short period. Really big rolling walkers can be locked for seating, but they are not comfortable for any time without a back cushion. Whatever solution you find is worth the shopping time.

Dinner time

For a lot of folks, picnic food is an issue too. Swallowing can be a problem for many of those with MG. In a home situation it’s possible to puree, thicken, and choose carefully. At a picnic or party something like bratwurst or chips can be a real threat.¹

It’s not just the consistency; it’s the talking that distracts. Cutting up some foods and looking for an appropriate combo (like potato salad) are solutions for some. Don’t be shy about asking in advance for a portion without hunks of celery.

The jello salad filled with nuts might look great, but maybe not today. In a pot luck it can be especially tricky

Whatever the menu, your family and friends can be a big distraction. Talking while eating can be risky under the best of situations. Trying to do it while holding your plate outside is even worse. Sitting at the edge of the action, and limiting eating to a smaller portion might be safer than walking around with a plate.

Swallowing malfunction (dysphagia) is a common symptom of MG. It can be minimal or significant. Many people don’t realize it until the problem of "food going down the wrong pipe" becomes so bad that it causes choking or aspiration pneumonia. Again, slowly eating thickened foods without the distraction of a conversation can be a good short term accommodation.

Weather woes

Too hot? Too cold? Myasthenia gravis is notorious for limiting the body’s ability to adjust the thermostat. So think ahead. What to bring? Layers, that’s what. On this site people have talked about other solutions, like personal fans and ice vests. We haven’t tried them but many folks find them a good solution.

Most MG folks also find the sun a problem, even at levels that others don’t notice much. (One reason: eye muscles don’t respond as easily.) So good sunglasses that adjust to light levels are always important.

Time’s up

The other key to a pleasant celebration is watching the clock. Last evening we went to a festival with evening music. It was an all-day event for most, but not for us. We spent an hour touring the grounds, found a place for a rest, hubby took his pills and we had small meal away from the crowd, and then spent an hour listening to the music. It was a great afternoon and evening.

Somehow marathon activities lose their appeal when you know that they might lead to exhaustion or a flare. That’s why it’s important to "negotiate" with your companions in advance. If they expect to be out for a 5 or 6 hour day, they might be disappointed.

Thinking ahead is the key to almost all of what we do. But it’s even more important for long, lazy days of summer. We’ve learned that these get-togethers are a lot more fun when we resign ourself to shorter and more limited schedules. Hope you enjoy too.