There’s probably a funny side to dysarthria

(https://www.theguardian.com/books/2020/feb/15/marina-lewycka-dysarthria-illness-rely-kindness-strangers)

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Very misleading heading for the article. It’s not funny at all and that’s what got me to read it. The article is awesome and is exactly appropriate for my Ataxia and my symptoms as well. A great read for those who don’t get too upset by the title. :heart:

:slightly_smiling_face: The author says ‘ there’s probably a funny side to dysarthria, but she hasn’t found it yet’. :thinking: Maybe I should have included that in the title…

gREGS One cannot get upset, it is what it is, shyte, yes, but liveable shyte.if one look after himself/herself WELL. A lot of exercise, walking, god home cooked food all sorts of supplements.I buried my late husband, after a short spell of big C, lymphatic system affected…Found it late, bone marrow affected. The life with ataxia is DIFFERENT, JUST DIFFERENT. one has to pace herself/himself, rest more often, CLEAN, COOK AS LONG AS POSSIBLE…the life is hard, but even harder if one cannot see funny side of it, observational funny it can affect any age, for whatever reason…like Marina L.I am in my 40s, inherited., others acquired in 70s, even older…

While I remain positive throughout the course of this ailment and the referenced article puts her version of ‘funny’ onto her situation, I personally have not observed the spontaneous kindness referred to. I have experienced plenty of professional kindness whereas a neuro may support me during a closed-eye rhomberg evaluation, or a nurse may lend an arm when I step onto a 2 inch high platform scale. I ask myself ‘is it that obvious’.?

I guess it must be! With many of my projects I have chosen to keep myself busy I will start my day with great expectations to complete something which requires a trip to the builder center for supplies,crossing a parking lot or drive, only to hear: “get out of the road you drunk” (multiple occurrences)… At this point I do not use any mechanical aids however a cane may help with foot positioning and assurance that the ground is solid.

Workwise has been such that personnel dept would call me in based on anonymous comments that something is the matter with him and subsequent drug and alcohol testing only to be let go after half a dozen negatives.

This has been a very slow progression over 13 years however when you see a friend or relative every several years, they don’t get it. Its not like I wake up and find myself unable to do something I was able to yesterday. So subtle to me or my wife that I don’t feel explanation is necessary. Really, know-one ever asks.

Regarding speaking, I do not detect an issue, however, I recently asked my wife to inquire why the kids don’t call much and the response she received was ‘he sounds impaired 9 out of ten calls.’. I’m sure my conversations are literally correct, however slow and monotone.

Neighbors: 60 plus year olds,summer vacation home community, many snowbirds which I have resolved must have greater issues than myself.

Law enforcement: We live in a state with a reward for anonymously turning in a drunk driver. Ask any ataxan if they could pass the heel-to-toe walk… Four pull-overs based upon anonymous untrained observer emergency calls following trips to the grocery and autopart stores. I was informed calls came because of my unsteady gait. Each case I displayed my National Ataxia Foundation card describing ataxia and was told anyone can get one of those. One case dismissed at scene, three trials by jury, 3 not guilty.

Otherwise speaking, I look athletic, facially young for 60’s and perfectly normal standing still!