Tuesday, September 16, 2014

I Have Difficulty Eating – But I’m Not Going to Starve

In the last year I’ve experienced increased difficulty getting food from my plate to my mouth. In an ironic twist, my skills at getting food on my shirt, on my pants, or on the floor have greatly improved.

We’ve been implementing new eating strategies for a while. I have plates with high sides so that I can push my food up against the edge in order to get it on my utensil. Below are two examples.

I eat one-handed. My left hand is not involved in this process at all, as it doesn’t have any value to add. So, because I push food up against the side of the plate, I need something to keep my meal from sliding across the table. We’ve purchased several sticky items that, when placed between the plate and the table, help keep things stationary. See the two examples below.

We have also modified my utensils. I have no need for a knife. I don’t have the strength or dexterity to cut food. I’m increasingly ignoring my fork, as spearing food has become more difficult over time, even lettuce in a salad. I mostly use a soup spoon for everything because Kim has already cut my food for me. In order to help with my grip on utensils, we’ve added foam to each of the handles. But even then, I had difficulty manipulating the utensils properly, so I asked my friend Michael to bend my spoons and forks in a couple different directions. Now, they work much better. See below.

It’s difficult for me to lift bottles, cups, or glasses to my mouth, so I tend to use straws these days. We found some reusable straws that we can bend into the exact configuration that we want. But I must admit that neither wine nor beer taste as good through a straw. See photo below.

As I stated in the first paragraph, I tend to spill a lot of food on my chest, belly, and lap. So we finally broke down and bought two adult bibs. They have saved a lot of damage to my clothes. I use them at home, but I haven’t got the nerve up to use them at a restaurant yet. See below.

But even with all these accommodations, I know that in the not-too-distant future I will no longer be able to feed myself at all. Already, Kim feeds me once in a while, depending on the food and on my level of hand and arm fatigue.

From a practical standpoint, there are worse things that can happen to me (and probably will). I’m not going to starve. People will always be around to feed me. But from a psychological standpoint, for both Kim and me, this is a tough one. The problem won’t be private dining, but rather group dining. I hate feeling pitied, and I know there will be a heavy dose of that sentiment aimed at me when I’m no longer able to feed myself.

But it doesn’t have to be that way. We have no plans to stop inviting people over or to curtail our dining out. I intend to sit back and enjoy my meals with guests, just like I always have. I’ll make conversation. I’ll smile and laugh. I’ll bore my companions with long stories and off-the-wall opinions. In the end, this is just another adjustment in a long line of adjustments that Kim and I will have to make.

It’s not the end of the world – not even close.


  1. Mitch, I wish your attitude could be bottled and given away to others. Thank you for the positivity. And please remember that those that may pity seeing you being fed just don't know how truly a dynamic person they are watching!

  2. Mitch, thank you for letting us in to your difficult, but ultimately courageous journey. You lead by example of how to have a life well lived regardless of circumstance. Wishing you the best.

  3. Sharing your experiences and pictures of what works for you is helpful - thanks. What did you use on the handles of the silverware?

  4. Lew here. You're the man Mitch. I remember the one and only time I 'yelled at the skies' was after my CCSVI surgery and my neck was so screwed I could not crane it out to accept a bite. It was frustrating and I had to take my fork and push the food with my other hand into my mouth. Not what you are dealing with but I get it; one more 'basic' function that is not so basic anymore. Rock on Brother.

  5. Hi Mitch, your story is exactly mine, my left hand/arm is immobile so the right has to do all the heavy lifting so to speak. Straws and insulated, lidded tumblers are used for beverages and my OT provided a grippy mat and a clip-on ring to make using any plate easier. I found a chain w clips on the ends on amazon similar to what dentists use and my husband fastens it to bar mop cloths to fashion washable bibs for me. OT also provided the foam handle build up for utensils. I was going to purchase a fork and spoon w the angled handles but they are a bit pricey and I didn't know how I'd like them. Your idea of modifying your own utensils is genius so I'll have my husband work on that. I also tend to have difficulty swallowing. I had the swallow study and while the mechanics of the process work as it should, as the muscles fatigue they aren't as efficient moving the food along leading to the coughing fits I'm prone to. I eat more slowly and pace myself so as to not wind up coughing, tears streaming. One would think this would result in a smaller waist line, but unfortunately that's not the case. My husband occasionally feeds me which is a lengthy process due to the slow pace I have to take. Friends and family seems to take this all in stride as do I. My 12 mo. granddaughter is intrigued that we use similar paraphernalia to get through our meals! Thanks for sharing Mitch, I always learn something helpful from you. --Patricia

  6. I live with similar roadblocks -- for me, it's my right hand that went on strike. I use regular utensils, still, but I know I'll need some adaptations soon. We never discuss the inevitable, but my husband and I both know I may need him to feed me one day. For now, I'll continue to do it my way.

  7. Mary Ellen, thank you for your kind words. I have my mother to thank for my positive attitude, both genetically and because she demonstrated for me how to live a life as a disabled person with grace and dignity.

    Judy, thanks for stopping by and commenting. You are very kind.

    Climbingdownhill, you are very welcome. The foam handles for the silverware can be purchased at most medical supply stores. I also found it on Amazon.com by searching for "foam tubing."

    Lew, no, you are the man! I hope things are going well for you in southern Ohio. Randi says hello. We hang out with her and Al several times a year.

    Patricia, I haven't tried the insulated, lidded tumblers. The dentist bib idea is interesting too. Luckily, I've not had difficulty swallowing yet, but I expect that is in my future. It's difficult to have a smaller waistline when we burn almost no calories all day!

    Muffie, you bring up a good point, maybe something I'll blog about in the future. How much time should people spend talking about what awaits them in the future? If we never talk about it are we in denial? If we talk about it too much are we obsessing?