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How do you deal with social gatherings?
The holidays are quickly approaching and parties, family gatherings, and many other social situations often come with them.
What symptoms of ALS cause you the most distress at events like these?
What accommodations do you or your friends and family make so that you can fully enjoy these events?
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6 Replies
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What bothers me the most is not being able to talk with others while we’re eating a meal. I have to one thing – – eat or talk not both at the same time. It strikes me as funny how when food is present and people begin to eat, conversations begin. Especially funny (ha..ha) that just when I have a mouthful of food, someone asks me a question (OK not funny). But I’ve learned to live with it and accommodate, rather than act like a monk at a silent r!
As for other accommodations, my friends and family know I need an accessible entrance, seating, and restroom – – they make arrangements accordingly.
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In a wheelchair – First you need to make sure there are no stairs, split levels, narrow doorways or tight corners to navigate. If there are one or two steps or an extremely high threshold, there are portable ramps that are relatively inexpensive. Check availability from a loan closet or support group. I’ve also had to traverse wet or snowy yards where my Permobil got stuck – and once I made it inside my chair was full of mud, which is difficult to clean from tires, floors and carpet.
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pt2 Once I make it inside the venue – the obstacles shift from physical to emotional, but yours could vary depending on where you are on your ALS journey. Inevitably there will be friends or acquaintances that you haven’t seen in a while, who could be surprised, shocked or saddened by your disease progression. I’m blessed to have my wife or son by my side to act as my translator. I find it best to avoid eating at social gatherings because it takes forever, looks gross, and nine times out of ten I end up choking. Parties can be incredibly awkward, but they can also be inspiring and uplifting for those who feel cut off and isolated.
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I don’t go…
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Ginny, do any of your family or close friends visit you at your home?
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I go to as many social events as I’m able. This prevents me from being afraid to show/share where I am in and on my ALS journey. Because my voice is impacted, I have my trusty Voice Amplifier🙂 this way I don’t have to work so hard to project my voice. I or my family checking on accessibility.
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