Tagged: coping skills, dietary changes, dining out, eating issues, living with ALS, quality of life, resturants
- This topic has 3 replies, 3 voices, and was last updated 4 months ago by Jim Knepp.
November 15, 2022 at 1:01 am #23029Dagmar MunnKeymaster
My ALS affects my speech and swallowing. Something I never noticed before I had ALS, is how easily I could carry on a conversation while eating. Now, I have to make sure I’ve swallowed my food before attempting to speak, otherwise my dining partners would have to call 911. I’ve since learned to avoid potential disasters by ordering simple “finger food” and focusing more on the conversations – – often, I take my meal home in a box.
There are a few more adjustments I’ve made to my dining out experience, that I’ll add in the comments below. But first, let’s hear from our forum members and learn from their tips.
Do you change your eating habits when you’re out in public? If so, why? What helpful tips can you share with us?
November 16, 2022 at 11:35 am #23076JT TaylorParticipant
In the 2 1/2 years since my diagnosis, I have lost the use of my hands and my arms. I have had minimal swallowing issues. But our dining out experiences have changed dramatically since I cannot feed myself. My wife has to sit on my right hand side, preferably with me sitting at the end of the table and her sitting to my right on the side. So booths are out of the question. It’s a slow process for us because my food has to be cut up and then fed to me. We usually take turns, I have a bite, she has a bite. So when we go out with friends or family we are always the last ones eating.
We’ve had some comments from other tables that we have overheard -“must be newlyweds”, “isn’t that cute”. We’ve been married for 40 years so we get a chuckle out of that later. We try to ignore it, but sometimes the looks can be a little bit uncomfortable.
But the bottom line is we don’t really care what others think, what’s important is that we can enjoy the company of our friends or family while we can.
Keep smiling, do what you were able to do and enjoy yourself while doing it.
November 16, 2022 at 5:05 pm #23078Len JaxParticipant
Kudos to you for not caring what other diners think and enjoying your meal and the company of those you are with! I am in a wheelchair and cannot speak, but I can still feed myself. My motor control is somewhat compromised, so I often drop things and always get food on my shirt. I preemptively say I am sure I will be the first one to have a stained shirt. I bring my iPad to order and converse with whomever we are dining with.
Dagmar – I always check out the menu online beforehand; avoid thin soups and thin noodles/pasta because none would get in my mouth. If I order sandwiches, burgers, or any solid meat, I request that the chef cut them into bite-sized pieces that can be eaten with a fork. That way, my wife can enjoy her meal. I am always the last one to finish my meal and sometimes choose to end it by taking the rest home so I can visit using my iPad. And yes, we will probably do what JT and his wife do when it gets to that point. I do like your idea of ordering finger foods.
November 17, 2022 at 2:38 pm #23090Jim KneppParticipant
Len Jax: I thought that I had written your first paragraph, because it describes my situation perfectly.
When Joanne (my Wife) and I are alone, we tend to go out to eat at off hours – late lunches or early dinners – in order to avoid crowds. When we go out with friends, they are most often the same group of people. Larry will sit next to me and cut my food (he did that when his 6 kids were young [they are now in their 40’s and 50’s]) so Joanne has a chance to talk with others without having to tend to me. And I too am almost always the last to finish. We also tend to tip extra for the mess I make.
November 18, 2022 at 7:13 am #23097Brian StanfieldParticipant
ALS has certainly changed the way we eat. I struggle to find something ALS hasn’t changed in the 19.5 years since my dx. I still enjoy eating and drinking without the use of a feeding tube. My favorite- a thick cut, well marbled ribeye, medium rare with some sauteed mushrooms, and the soft buttery middle of french bread. A 10 oz steak is a 45 minute commitment that I look forward to a few times a month. I do pretty well with brunch (I don’t get up early enough for breakfast) eggs, pancakes, french toast, etc.
It takes 3-4 times longer to eat about half the amount of food I used to. I usually get tired of eating before I get full. I would always choke on my first bites – so now I’m extra deliberate – instead of 1/2 bites I take 1/4 bites – 30 chews not 20. I’ve gotta get warmed up before I really “go for it”. Talking and eating do not mix – no matter how funny you think your comment is – it aint worth it. We still go out to eat – not quite as often as pre-Covid -some restaurants are better than others when it comes to access to tables and seating. I am blessed – my wife is always there to help me – we got used to the stares and comments long ago…those are other people’s problems.
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