How I find a Word in my head? Oops! Pam fell down!

Thought I’d try to catch up a little bit today.

Overall, Pam has been doing a little bit better. The pain specialist has been working for over a year to find the right combination of meds for her. Finally, I think we have something. He’s managed to narrow it down to two meds. She has several conditions which we’ve managed to get a grip on over the last 4-6 months of evaluation. Each condition seems to have its own type of pain. Some of the types of pain she suffers from is neuropathic pain, radiculopathy and fibromyalgia all of which are relieved with Topiramate (brand name Topamax). He also needs to use a narcotic agent (unfortunately) to manage some of the other types of pain.

So, overall, we see some mild improvement. But, low and behold! After much protesting from me, last week she decided to go outside to get the mail. Yep, she slipped on the snow and ice in the driveway and fell on her knee! Gosh! How could I turn around and say, "I told you so." Well, I did, but only several days later when the time was right. Smile, smile.

Because of her osteoporosis, she has a 5-6X risk of bone fractures. I saw her go down and immediately pictured in my head of having to call an ambulance. Fortunately, she was able to get up. Needless to say, she is sore and bruised all over with a big ‘egg’ on her knee! I did take her for evaluation and no fractures!! But it sure doesn’t help deal with Mr. Arthur in her knee which many of us also have.

Some of my latest thoughts and insights have to do with language difficulty — expression and word finding.

  • difficulty finding the right words. I can remember a long medical terminology word but can’t always retrieve a simple word such as sofa, fork, etc.
  • I tend to use descriptions in place of words “that thing behind the house you sit on" instead of “patio or back porch”). Recently I couldn’t remember the word "fork" so I resorted to saying, "You know, that thing you stab into food."
  • occasionally have difficulty with some pronunciation; familiar words don’t sound right
  • sentences don’t sound right or are phrased incorrectly (don’t make sense)
  • have difficulty explaining a thought or idea
  • I rely on Pam and Chad to guess at the meaning of what I am trying to say
  • very frustrating when I have trouble say what I mean
  • Now I have a lot of trouble talking on the telephone unless it’s someone I know very well or from many years ago. I think part of it is that there are visual cues over the telephone.

One of the descriptions I was able to use with Pam recently was this. At times, whenever a word won’t come, it’s as though I can picture a long tunnel starting at the front of my head progressing to the back of my head. The tunnel gets more narrow and blacker as it goes to the back. At the back, sometimes there is nothing there, thus no word.

At other times, there is a vague dot or small object or small word which is incomprehensible. Sometimes I can visualize it slowly coming to the front of the tunnel. How far it comes up seems to determine whether I get the ‘word.’ Sometimes, I literally pause and wait for "it" to come forth. Sometimes, it will only come half way and then stops. This is actually more frustrating than if it is just totally blocked. Other times, it all comes forward with the right word but in "slow motion." That’s when I find myself talking and literally saying, "wait a minute." I just need some time for it to crawl up.

It seems very hard to describe all this. If someone can’t follow what I just said, I totally understand.

Enough for today. Just thought I’d share my perspective on word finding.



11 Responses

  1. Dear David, some stroke victims who suffer from aphasia can produce words when singing. Perhaps it could work for you as well?

    From a caregivers point of view, best advice I ever got was to listen to the emotions behind the words, and try to respond to the feeling.

    wishing you and yours all the best,

  2. Dear David,
    You described the word retrieval issues very very well! Thank you for sharing that with us – it helps so much when we try to figure out what is going on with our own loved ones. I hope Pam’s knee is better real quick!
    Many regards,
    Helene in NY

  3. David,
    So Sorry that Pam fell. I also have fibromyalgia (diagnosed in 1993).

    You & I have the same problems with language expression.I also have trouble with decision making and attention. My symptoms started in 1997 & continue, only more extreme than they were originally. They became better when I was on Aricept and worse since being taken off of Aricept.

    Blessings, Sharon

  4. A big warm hello from Texas. I am more sorry than you can know about both of your health problems. Poor Pam, you have to be in agony. And, David, you described perfectly just the way I am about finding words. I have been doing this for years. Not just once in a while, but quite often. I also have trouble figuring out how to spell a simple word.
    Sometimes I am appalled at what I have written. Sometimes a completely different word is in the place of the one I intended.
    So yes I understood you very well. And I have enough pain of my own to really feel bad for Pam.

    Continue your love and devotion to each other, as that is a great sustainer when the chips are down. It sure has been for us.

    My thoughts and heart got out to both of you,

  5. Hope Pam’s knee is improving.
    I know what you mean about the tunnel for the words – mine is a circular tram route – the word is there at the back but only delivered to the front a while later!
    All good wishes freda

  6. David, thank you for sharing your difficulty with word finding. I am seeing that happen with my husband and was wondering what was going on with him but I guess it’s all part of the LBD and we both have to learn to cope with it. It doesn’t happen all the time – just occasionally so I guess that’s a good thing. Phyllis

  7. David, thank you so much for posting this. It’s such a helpful perspective in understanding how my Mom previously spoke and how it’s that much more difficult for her now. I am very grateful for all that you post here. I thank you for your courage, your persistence, your caring, and your helpfulness. I also wish you wonderful thoughts and days.
    Warmly, Norma

  8. Dear David

    I so understand from the viewpoint of communicating with my late husband who did have Diffuse Lewy Body Dementia and Bract 1 Alzheimers (confirmed by brain autopsy). He would also ask me to “wait a minute” and would tell me he was having trouble getting the words out.

    Thank you for sharing your thoughts, as it does help those of us who are still puzzling over this disease.

    God bless you and Pam!


  9. Thanks for writing this post David. I explained your word finding issue with my mom who has the same trouble and she agreed with your description wholeheartedly.

    The subliminal hypnosis recording that I had made for my mom 6 days ago (she listens to it every day) appears to be helping her to retrieve words more easily. She still has trouble but nothing like it had become for her.

    Maybe hypnosis will help you too?

  10. Thank you. That is a fine piece of writing. I don’t know how much effort it took you to write it, but few people I know could have produce anything that eloquent, however much effort they put in, and without any form of dementia let alone two!

    I met an elderly lady recently. I had been warned that she had slight dementia and I was quite apprehensive about meeting her. What would we talk about? Would she be able to understand me? We had a brief conversation which went absolutely fine. She bought some drinks and all I could think was, “Should I let her? Can she manage? Will she be able to carry the drinks?” I wish now we had chatted for longer but my fears – not her illness – got in the way. I wish I hadn’t been told she had dementia before we met. People like me need to know it’s perfectly possible to have very enjoyable conversations with people with a diagnosis of dementia. You, like English author Terry Pratchett, are doing an excellent job of educating us.

    Look after yourself, and please keep writing!

  11. David,
    Sometimes I have said, “That thing I usually eat with.” lol

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