What was I saying again?

I lose words more than I lose my car keys…and they’re harder to find too. I think conversations with me are more like a game of charades than actual conversations. I’m sure it frustrates those I’m talking too as they try guessing the word I’m fumbling around in search of. It can become quite comical too as I point, make hand motions and slap my leg in an attempt to help the process along.

ME: Can you hand me…? [as I point across the room]

FRIEND: uhhh…a pen? a glass of water?

ME: No [as I tap my thumb to my finger in a pinching motion unable to even describe what I’m trying to say. I sit in silence making hand gestures in hopes it resonates with her.]

FRIEND: Nail clippers? Scissors? Paperclip?

Minutes pass and all I’m trying to say is “Can you hand me the TV remote?” Simple, right?

Not being able to communicate can be frustrating. I do much better in writing. There’s nothing worse than trying to get your point across or share a meaningful moment with someone while losing the thought you where trying to share. Sometimes my attempt in describing a word takes so long that I actually forget the thought I had in the first place. It takes skill to keep me on topic. A skill I’m not always very good at.

Yesterday, I could tell my words were getting stuck and mixed up more than usual. When that happens, I have a tendency to not speak as much. I just don’t want to frustrate people…or myself.

You know how people say to pick and choose the arguments you get in. Well, I pick and choose each conversation I have as well. So if I choose to share a thought with you, it’s going to mean something because I chose to break out of my silence in order to chance a good flow of words.

I have noticed that the more frustrated I get, the more my words get stuck. The trick for me is to stay calm and not allow my mind to wander. That may mean I talk slower, talk more direct, or use shorter sentences. But that’s just my way of coping and working with my disability. It keeps me from getting overwhelmed. I say what I have to say and move on.

When you find yourself getting lost in a world of words, know that it’s okay. You’re not going crazy and you definitely aren’t alone. There’s an entire population of us hand gesture, charade playing, word searching MSers out there. Take a deep breath and have some fun as you turn your conversations into a game of Guess What I’m Saying. Laughing always makes things better.

MS Gets on My NervesMS WarriorMS Superhero  

About the Author

Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

66 replies
  1. Tammy Denham
    Tammy Denham says:

    I lose words often. I do know sign language and many times even if I can’t think of the actual word I can use the sign. I guess it helps to know a second language for times when you simply can’t remember the English word you need.

  2. Annette Jolly
    Annette Jolly says:

    I don’t lose words exactly, I just say the wrong word which is usually similar to the one I meant to use – and then swiftly change hoping no one has noticed!

  3. Jane
    Jane says:

    My husband is getting better and better at figuring out what word I’m looking for. I had neuropsyche testing last year because I thought I was getting stupid. He told me, after testing, that getting stupid wasn’t what was going on. My brain was “buffering” just like a computer does. I get frustrated when that happens, too!

    What bugs me is when people dismiss it and say, “Oh, I forget things all the time.” It is NOT the same! I’ve stopped saying how I forget things because of people’s comments.

    I want a t-shirt with the buffering symbol on it saying “Buffering” so I can just point to it…

  4. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    I have used hand signals many times when at noisy pub to get a drink or some other message and that has helped in communication with others. Also using a different description for an article can help. Like a remote can also be something to turn the TV/lights/stereo etc of and on without touching it. This has also worked for me.

  5. Pamela Brockway
    Pamela Brockway says:

    Love this article! It just happened to me tonight as I was taking my car to auto shop to fix my tire with a flat, every question I was asked I couldn’t think of the words.. what’s your car? What tire is it? Is it on the wall? What year is it!?!..a few people in lobby had that look of amazement, wondering what is wrong with herI’m not stupid, I can really talk… long Monday’s at work and stressed about car tire.

  6. Lola Hale
    Lola Hale says:

    My mouth and brain disconnect a lot of the time now. I try not to let it frustrate me too much as that just makes it worse. I keep quiet a lot more than I used to. I was a right chatterbox before MS struck, now I seem to chat a lot less, especially with people I don’t know and get surprised daily with the array of strange words that tumble out of my mouth….

    • Pmdbio
      Pmdbio says:

      I think it’s natural for dogs to want to and try to understand us, because they can’t talk. Dogs have so much more patience than humans. If they could, they’d laugh right a long with us. What a blessing your service dog must be to have in your life!

  7. David Burnett
    David Burnett says:

    It’s very frustrating and can be kinda funny it makes me laugh. Some people like my daughter understand every word i say. You can’t get mad it only makes it worse

  8. Barbara Crawley Adams
    Barbara Crawley Adams says:

    I can’t have a normal conversation anymore. I don’t even try. I don’t even comment on FB anymore very often. I just can’t find my words. But usually my hands go numb in the middle of the conversation and I start shaking them and that changes the whole conversation… You know, just another day.

  9. Jeanette Ford Lujan
    Jeanette Ford Lujan says:

    If you think you’ve won an argument just because you know our weaknesses…okay, go ahead. You’re arguing with someone who is disabled in their brain. You only mixed us up, frustrate us and ultimately..you win? Hope people would just be kind and stop tripping MSers with words.

    • Pmdbio
      Pmdbio says:

      Wow… I’m so sorry this is being done to you on purpose. It seems to be a no win situation. Yet, the other person is showing such a low form of weakness… they’re the real loser.

  10. Theresa Rose Lake
    Theresa Rose Lake says:

    Happens to me on a daily basis! What is frustrating is when people don’t understand or they make fun of you. Better yet, it is frustrating when you are corrected for not saying the right words.

  11. Stephen
    Stephen says:

    I find this even happens when I write. I get lost trying to remember how to spell a word, or trying to find a letter on the keyboard. Writing, and texting, is so much easier than speaking or phoning. Add in my stress-triggered stutter and I’m a mess. And, like you, often just choose not to speak.

  12. Carole Galloway
    Carole Galloway says:

    I am having this happen more to me now. I will have to practice on my hand gestures, and it is true that the more frustration you have the worse it is. It also is good to see if the other person is really listening to you, as long as they are trying to guess what you are trying to say you know you have their attention, lol

    • Lola Hale
      Lola Hale says:

      With the idea of using hand gestures, I have learned sign language and taught the basics to my family so I can at least ask for a cup of coffee and show how I’m feeling when my mouth and brain fail to connect xx

  13. Henry Viger
    Henry Viger says:

    Love your blog and look forward to your articles each week. It seems even the neurologists don’t get it when we talk of our cognitive issues or at best, they minimize them. Sometimes, even I forget that MS has affected my cognition and just wonder if I’m just plain stupid. Your articles have encouraged me and for that I thank-you. You are a blessing to many of us.

    • Lola Hale
      Lola Hale says:

      Me too! Replying by messaging/text is so much easier as there is no pressure for a quick response with someone stood there in front of you waiting awkwardly for a reply to be given! Xx

  14. Kathy Hamilton
    Kathy Hamilton says:

    “I’m going to a….. oh, heck… you know…. when a bunch of people get together in the same place to learn about something they’re interested in that has to do with work!” ….. or substituting words that have the same number of syllables and the same first vowel sound: “As soon as I get home, I’m putting on my bananas!”

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