Wednesday, January 19, 2011

conversation MS and blarney

Riding and chatting in our wheelchair van can stretch the boundaries of whatever anyone thinks conversation means.

Outside of trying to talk with an infant or traveling to a foreign country I wonder if many of us actually give much thought to language.

Memory loss whether short term, long term or both blended with any stage of degenerative dementia symptoms is a land of words without frontiers.

Our story is Multiple Sclerosis specific so there is an additional layer of standard MS obstacles to speech and voice - slurring, scanning / pausing, volume control, and emotional lability plus pseudobulbar affect. Speech & Voice Multiple Sclerosis 

Patti, with challenged short term memory, suddenly sees something out the window and not only may the conversation abruptly change directions but change ‘when’ we are talking about as her memory may shift the conversation from now to then.

MS is all about short circuiting so it is also probable you could find yourself carrying on a seemingly rational lucid conversation with Patti and beginning to believe this entry is my hallucination. Weather is more predictable.

While professionals hopefully are trained for such communication, family and friends face not only obstacles but their own emotions. With a blink of an eye and a change in time, you may not exist. We all ‘look for’ and ‘need’ feedback or response in conversation. When we do not receive it - does it mean it is not there?

I majored in speech communication in college and all the “source => message => channel => receiver” models in the world are little preparation for communication without rules. 

45 years ago my Dad held my legs while I leaned down backwards between the battlements of Blarney Castle to kiss the Blarney Stone. Today, I know that the ‘gift of gab’ still means you have to bend over backwards if you care to make it work.

Caregivingly Yours, Patrick Leer 


  1. Good description, Patrick. Before he died, Scarecrow's dad had a closed head injury that left him with severely impaired short-term memory. It made conversations a real adventure in time travel!

  2. Oh my goodness! This is all so new to me.

    My husband (with MS) has problems with leg twitching and periphial vision. Lately he is experiencing memory loss and I feel like his brain is short circuiting, but I dare not say anything. He's so defensive. I've been blaming his irritability and personality change on him having a mid-life crisis, but maybe it is his MS?

    Multiple Sclerosis sucks!

  3. I think it takes talent to "go with the flow" on how a conversation may or may not go and if it shifts midstream to handle it with grace and dignity; all characteristics I believe you have adapted very well over the years, Patrick. With my MIL and her memory lapses with Parkinson's and the dementia associated with it, I have learned to accept her wherever she is at. If she is in Kentucky where she grew up, I'm there too. If she is visiting friends in New Mexico, I'm there too. So much more better than trying to correct her for something she really has no control over and making her feel sad.

    (I'm doing the dreaded "m" this week and next, so if you don't see me around, you'll know why :)



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