While pushing a laughing Patti in her wheelchair through our grocery store, her Multiple Sclerosis related Speech became stuck like a stylus on an old vinyl record “You’re a …” “You’re a …” “You’re a …”
Then in a volcanic explosion of decibels she shouts, “You’re a goober!” before dissolving into laughter.
Now a neurologist would charge you big bucks to tell you which Greek words apply above, dysarthrias, dysphasia, aphasia, dysphonia, or dysphagia.
I simply thanked Patti on the part of myself and everyone within hearing range.
What exactly is a goober? “How the f@ck should I know?” Patti offered.
MS Speech problems swing both ways, frustrating for the speaker, confusing for the listener.
MS Speech problems are all about short circuiting from myelin damage. Fatigue can affect and intermittent nature can make everyone nuts
People diagnosed with MS do not wear signs so ‘inquiring minds’ react from speculation to assumption as to why speech is challenged.
Listener assumptions can be as much of the problem as the speech challenges.
Slurred speech was the first speech symptom to appear in our story. Patti was ‘encouraged’ to go home from work one day decades ago in the dawn of living with Multiple Sclerosis as coworkers ‘assumed’ she was drunk.
Scanning speech / Long Pauses Do not ‘assume’ that someone has trouble understanding what you are saying or cannot find ‘the words’. This is about challenges with the physical process of speech.
Volume is particularly challenging for Patti. Appropriate levels can get interesting to say the least. (a church moment)
Volume is particularly challenging for Patti. Appropriate levels can get interesting to say the least. (a church moment)
Suggestions from two decades experience:
- Do not assume!
- Patience is support.
- Remember speaking can be frustrating and tiring.
- Be honest, not condescending, when you really have not understood something.
- Check ‘your’ self-conscious attitude at the door.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
I like your suggestions you've learned over the years, Patrick; I think the best one is to be honest without condescending if you can't figure out what someone is trying to say to express themselves.
ReplyDeleteI think a goober is a wonderful way for Patti to describe you :)
(I've changed my signature line/picture for comments; I figured you would figure who I was, but didn't want you to be too confused with who was coming to visit and leaving a comment on your blog :)
betty
I've noticed that BR's speech is getting more "pleading" in tone, adding a sense of urgency to just about everything he asks for. Each request requires a great deal of energy to process and prioritize. For the stuff that really isn't urgent, a simple "can that wait until I'm done with this?" usually works. But for the urgent stuff, the processing delay causes a lot of arguments.
ReplyDeleteI had a lot of speech issues in my first MS years, most discouraging at staff meetings. But often I look at my spouse and say, "WHAT did I just say?" I know it wasn't right but brain can't even tell me what went wrong! hahahaha
ReplyDeleteI found an interactive software which helps to improve speech delayed problems and help build vocabulary on toddlers, young children and adult. SeeMe SPEECH COACH has been very effective in the learning process of those that tried it. I hope you give it a try and share it with others too.
ReplyDeletewebsite: http://www.seemetutor.com/