You’re Invited to the Barbecue! How to Make Summer Events MG-friendly
I traveled a long road to finally put a name to the crippling symptoms I began experiencing after my medical retirement from the Army in 2011. Once my diagnosis was confirmed in 2018, I began blasting my friends and family with facts about myasthenia gravis (MG) when the awareness month would roll around in June.
Last year, I held back and didn’t share every day. This year, I’m doing something even more different: I’m turning awareness into action.
Through my experiences, I’ve recognized that it can be difficult for friends and family members to understand this rare disease, let alone know how to support those of us living with it. When people don’t know how they can take action and help, they tend to shut down or remove themselves because they feel helpless.
No one likes feeling that way, so I’ve decided to offer actionable suggestions about how to support people with MG throughout the awareness month. This week, I’m sharing three ways you can help out myasthenics at your next barbecue or any other summer outing.
Action step No. 1
Summer often involves family get-togethers, outdoor events, and employee appreciation barbecues. Many myasthenics experience heat intolerance, as heat can exacerbate our symptoms. One way to support your loved one with MG is by providing shade coverings and cooling systems, which can be as simple as an outdoor fan or an air-conditioned room they can step into when needed.
The heat of summer has caused me to miss out on more family functions and events than I care to remember. Losing the ability to attend these events sucks. Being unable to participate makes me feel like a noncontributing member of our family. As a result, relationships can suffer — especially if people don’t understand how the heat affects MG.
Action step No. 2
In addition to offering ways to stay cool, another great way to support your loved one with MG is to make sure that the food and activities are all located relatively close to one another. Many of us have mobility issues and often weigh the pros and cons of attending an outing based on the distance we must walk, in addition to the weather conditions. On a cool spring day, walking 100 yards may be hunky-dory, but walking that same distance on a hot day would almost certainly exacerbate symptoms. By keeping everything in close proximity, you’re making it easier for us to RSVP with a resounding “Yes.”
Action step No. 3
Barbecues are full of delicious food: steak, chicken, corn on the cob, and all the yummies. However, some of these foods can pose a challenge for myasthenics who have bulbar symptoms that make eating and swallowing difficult. You can support us by making sure there is food available that is soft and doesn’t require much chewing. Chewing can fatigue the jaw muscles, which not only makes eating more of a chore for us, but can lead to choking and aspiration.
When I’m experiencing bulbar muscle weakness, I tend to fall back on foods like pasta salad without a lot of crunchy vegetables, baked sweet potatoes, mashed potatoes with gravy or butter, applesauce, watermelon, Jell-O, pudding, tuna casserole (made with rice), and pies. You can also ask the person with MG if they have any food preferences or restrictions, and invite them to bring a dish they’d be able to consume.
Also, make sure to have nonalcoholic beverages on hand. Alcohol interacts with many of the medications we have to take and can exacerbate symptoms. Offering nonalcoholic options helps us not feel like the odd one out, and is a great way to show your support.
Those of us with MG miss out on a lot of fun family and community activities for a variety of reasons. I hope that some of these suggestions will help make an upcoming event more accessible for your loved one.
How have you helped a friend, family member, colleague, or fellow myasthenic? How was it received? Is there anything you would have done differently? Please share in the comments below.
Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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Thomas L Clark
Great article! This list of symptoms causes thoughts of discomfort to come roaring back.. I have been symptom free since the thymo surgery. The Doc keeps asking me about mg symptoms every visit. After my covid and the remnants of that, (fatigue but not a wipeout like MG) Now I am having experiences of very mild diplopia, a shadow line above in left eye until I close the right, then it is just like astigmatism. The eyeglass guy is chasing correction and it comes and goes. Optho docs like before see and say nothing declarative. I get choked easier too. MRI and Cat scans etc. for stroke negative. The fear factor has me on the run me thinks. I remain socially active all health numbers are great and in range. My original question I would like to field here for comment is, has anyone had this faint diplopia? Mine was very severe and a patch helped. I cover my right eye and the left sees a split image. I also have a cataract clouding the scene. Getting old ain't for sissies but how about a wimp?