“This chili is bangin’!” – MS and Speech

Every day is MS Awareness day in our story.

Enjoying some of my home made chili at home earlier this month, Patti blurts out “this chili is bangin’!” Laughing, I couldn’t help but wonder if ‘gangsta wannabees’ had taken over Patti’s care facility. Certainly none of us had ever introduced the slang into conventional dinner conversation. Is this the new jargon of care facility life in 2012?

More than likely just MS Speech. Not one to write technical entries our story of MS Speech for MS Awareness Week/Month is best told through trial and error memories we lived and laughed through to get here.

Speech & Voice Multiple Sclerosis October, 2009

"a church moment" March, 2006

... Patti cannot always control speaking volume and the more she tries the more opposite it can become

“Horton Hears A *&#!” March, 2008

... “The frontal lobes are very important in regulating our behaviour. … People … fail to inhibit their innermost thoughts and do not modify their comments according to the situation.” Cerebral Function Unit, Carer’s Support Group, Salford, UK

"Hello!You little brat!" December, 2008

... In a recent study of MS patients, … 62% reported speech and voice impairments

cursing and swearing and Multiple Sclerosis, oh my! July, 2009

... Cursing and swearing is different than language, activating the emotional centers in the right side of the brain, rather than the cerebral communication centers on the left.

Thou Shall Inspect What Thy Expect October, 2004

... From the National Multiple Sclerosis Society “Speech disorders are fairly common in MS. Lesions—damaged areas—in different parts of the brain can cause several types of changes in normal speech patterns. …Long Pauses … Words are Slurred … Swallowing Problems …”

Regardless of whether MS Speech is a disorder, an impairment, a symptom or whatever - after 22 years of spouse caregiving if Patti calls my chili bangin’, that’s a compliment in my book!

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

so they f*#cking say - Multiple Sclerosis speech

Arriving Easter morning to pick Patti up for an Easter Brunch outing, her care facility was overflowing with families and volunteers.

“He is risen!” rolled off tongues more frequently than hello or good morning.

Well until Multiple Sclerosis Speech turned the whole greeting and response thing upside down.

Patrick: “Hey! Patti.”

Patti: “Yeah!”

Patrick: “He is risen!”

Patti: “So they f*#cking say!” (and loud enough for ‘they’ and anyone and everyone to hear)

For the briefest of fractions of a second you could have heard a pin drop …

Then as Patti exploded in laughter the most joyous sound began as a contagious chorus of guffawing to giggling from residents and visitors echoed and rose up through the Easter morning.

I overheard more than a couple comments that they wanted to go where she goes to church. J Hallelujah!

Related entries Multiple Sclerosis Speech:

- Voting, cognition, and Multiple Sclerosis

- Speech & Voice Multiple Sclerosis 

- cursing and swearing and Multiple Sclerosis, oh my!  

- "Hello! You little brat!"

- Horton Hears A *&#!

- "a church moment"

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

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 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer 

 

the spy who … forgot

Pushing Patti by the staff break area in route to our van …

Patti: “Sometimes my hearing is too good. I can hear them talking about … (pause)”

Patrick: “Well super spy, talking about what?”

Patti: “I don’t know I forgot.”

What can you do but both start laughing.

Memory loss, impaired reasoning, and cognitive decline with Multiple Sclerosis, and I suspect any disease, spawns a range of emotions.

Loss of a self-directed life is just not something we teach. More likely we deny.

Of course then again Multiple Sclerosis is never predictable.  Laughing itself may trigger a perfect storm of MS symptoms from emotional lability, pseudobulbar affect, and scanning speech to dysphagia.

Driving along in the van we are listening to a CD by Flight of the Conchords. By the first refrain of their song “Mutha ‘Uckas” Patti is laughing so hard she starts crying then can’t even talk and then starts one of her I-know-I-am-not-choking-but-it-sure-feels-like-it episodes.

Ever try to calm or distract someone when dealing with hysterically infectious laughter? You both only end up laughing harder.

Living with Multiple Sclerosis and caregiving is serious business, there is no doubt about that. Too much time is mired in the details. The details, problems, and pressures can swallow you, or in other words … 

“Too many mutha uckas

Uckin' with my shi-

How many mutha uckas?

Too many to count”

 Maybe the best of possible things you can do is make the time to both start laughing.

Related entries

Speech & Voice Multiple Sclerosis

cursing and swearing and Multiple Sclerosis, oh my …

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/ 
videos: http://www.youtube.com/daddyleer

Voting, cognition, and Multiple Sclerosis

Oh, it is never boring voting with Patti. Her Multiple Sclerosis symptoms: legally blind, short term memory loss, cognitive impairment, and inability to modulate her voice volume can turn whispered assistance into … what I call ballot envy. Certainly “What the f#ck is a  prothonotary?” brought chuckles from way too many other voters.

coroner (vote for one)
Patti: “It’s a stupid idea.”
Patrick: “Stupid idea is not a choice, Democrat or Republican”
Patti: “Republican”
Patrick: “Why?”
Patti: (laughing) “They are probably better with dead people.”

Now way too many other voters are enjoying lingering and I am feeling like the straight man in a comedy routine.

Pennsylvania has no State Constitutional disqualification provision for citizens with cognitive or mental disabilities with or without assistance.

Sadly this is not true for citizens in half the United States. You can view your own State Laws Affecting the Voting Rights of People with Mental Disabilities

The National Network for Election Reform reports that beyond legal obstacles too often disabled voters encounter voting challenges, voting tests, and denial of effective assistance.

“Friends and fellow citizens: I stand before you tonight under indictment for the alleged crime of having voted.” Susan B Anthony

Poll workers often deny individuals the right to get assistance from a person of their choice and insist that an election worker(s) must assist the voter - so TRUE and our most uproarious and entertaining election memory. Voting & MS

Patti wants to vote at a polling station like everyone else, no absentee ballot alternative for her.

Pushing Patti toward the door we were surrounded by a dozen last minute campaign pitches and offered handshakes. One candidate simply opened the door for us, remarking “I thought you two might appreciate a hand.” … we thanked him with our two votes for school board.

Whether voting is a right, privilege, or responsibility or whether federal, state, or local it is what we do in spite of obstacles and enjoy!

By the way, Republican won Coroner, and door opener won School Board, so much for political science.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

Speech & Voice Multiple Sclerosis

Multiple Sclerosis speech problems impact social functioning, no ifs ands or buts.

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) 

MS related Emotional Lability plus Pseudobulbar Affect equals excessive emotional response plus anything might be said in any given situation. Patti for example becomes a ‘laugher’ at funerals.

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.

Urban Dictionary defines goober as a term of endearment, a kindhearted goofball.  … I’m honored!

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 

musings: Patrick Ponders ... 

cursing and swearing and Multiple Sclerosis, oh my!

Cursing and swearing has always been one of the oddest changes in Patti with Multiple Sclerosis progression.

“World-renowned expert in cursing”, Dr. Timothy Jay, Massachusetts College Of Liberal Arts offers:

“Swearing is like using the horn on your car, which can be used to signify a number of emotions …”

(“The utility and ubiquity of taboo words” Perspectives on Psychological Science, April 2009)

Dr. Richard Stephens of Keele University in England concludes

"I would advise people, if they hurt themselves, to swear."

(“Swearing as a response to pain” August 2009 NeuroReport)

Challenging economic times have obviously not affected academic funding for research.

Previously, in caregiving: “Hello! You little brat!” I discussed disinhibition, dysphasia, and dysarthia as factors in MS and speech challenges.

Cursing and swearing is different than language, activating the emotional centers in the right side of the brain, rather than the cerebral communication centers on the left.

While trying to watch “Brüno” at a theatre last night Patti experienced one of her ‘choking-like episodes’. Triggered by a scene Patti found hilarious, obviously too hilarious, communication between her brain and throat muscles went all out of MS whack.



When you factor in all the muscle miscommunication ‘not involved’ in swallowing due to MS related dysphagia and left vs right side who’s in charge here you can get an epic portrayal of choking except that Patti is not actually choking. Calming her, distracting her, ‘rebooting her brain’ are the best ways to resolve these episodes.

Coughing, hacking, and gasping for breath is punctuated with expletives that could turn any theatre into X-rated.

Shortly I found a well intended patron at our side offering to help, exiting into the hallway we were joined by theatre staff.

Patron: “Is she OK?”

Patti: “NO!” (gasp) “I am f@cking choking!” (cough)

Patrick: “Patti you are NOT choking!”

Patti: “Eat sh#t (hack) and die (gasp) muther f#cker!”

Staff: “Should I call an ambulance?”

Patti: “No! (cough) You as*hole. (belch) I need a cigarette.”

At least it is NEVER boring!

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

caregiving: "Hello! You little brat!"

In a recent study of MS patients, … 62% reported speech and voice impairments. Cognitive problems can be a barrier to communication. … 48% displayed cognitive dysfunction

While pushing Patti through the aisles Christmas shopping, a young girl wearing reindeer antlers and jingle bells was leaping about wishing Hello and Merry Christmas to all ...

… until she was stopped in her tracks by Patti’s, “Hello! You little brat.” Patti was NOT in a bad mood, her MS was preventing her from communicating appropriately.

These are the caregiver moments when I wish I had a big sign “MS Zone” or something. Then again what would that even mean to most people.

Dysarthia, in which the capability to understand, remember words and construct sentences is not lost but the ability to speak clearly becomes affected. Slurred speech, together with impaired mobility, can sometimes lead to accusations of drunkenness or decreased intelligence.

Dysphasia, in which there is a lack of understanding of what is being said and an inability to recall the vocabulary and grammar necessary to build a sentence, hesitant disjointed speech affects confidence and demands patience on the other end.

Disinhibition is one of the rarest behavioural symptoms of MS and linked to MS-related damage in the brain. People experiencing disinhibition may have little or no awareness of others' feelings regarding their actions. Making a hurtful or inappropriate comment is frankly the milder end of a loss of their sense of social rules.

Attempting to defuse the moment by introducing ourselves to the formerly happy child , I hoped that putting names to faces might help Patti.

“Patti, say hi to Laura”

“Hi Laura! You little brat!”

Realizing this was going nowhere, it was easier to offer the child a conspiratorial wink and a whispered aside, “Don’t let her bother you, she’s really the Grinch in disguise.” … Recovering with a giggle she bounced off happily.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

Caregiving: Horton Hears A *&#!

“Involvement of the frontal lobes in the disease course might provide an explanation for the great numbers of psychological, behavioral, and personality symptoms that are manifested in MS.”

Hester-Louise Henderson, “Living with Multiple Sclerosis” University of South Africa 2005

Legally blind from Multiple Sclerosis Patti could not see me enter the activity room yesterday where crafts volunteers where working with residents and patients decorating foam crosses for Easter.

Patti was chatting and laughing at a table with four other residents and a volunteer.

Alerted by one of her more hawk eyed table mates, Patti exclaims (well actually loud enough for the entire room), “Thank God! These f#cking crosses are making me nuts!”

Grabbing a foam cross from the nearest stunned ‘artist’ I did my best improv casting out of the tongue demon ritual to the amusement of an audience suddenly finding excitement in an arts & crafts hour.

“The frontal lobes are very important in regulating our behaviour.  Whereas we might think something internally, our frontal lobes are able to ‘stop’ us from saying it. People with frontotemporal dementia in particular are unable to do this.  They fail to inhibit their innermost thoughts and do not modify their comments according to the situation.”

Cerebral Function Unit, Carer’s Support Group, Salford, UK

Then we were off to the movies, “Horton Hears A Who”. No matter what age you are, 90 minutes spent with Dr. Seuss is just plain fun.

Fortunately we made it all the way through without disruption from MS dysphagia and related choking in spite of buttered popcorn, Junior Mints, and sodas.

Trying to engage Patti in a “what did you think about the movie?” conversation afterwards I offered – maybe it was a parable about compassionate Republican government (the elephant) protecting individual rights (the Who’s) against the thought police Democrats. (Hey now! That’s topical, and atypical.)

Patti stares at me and responds, “It was about a f#cking elephant.”

<SIGH> Obviously the casting out of the tongue demon failed. I have got to work on that.

Caregivingly Yours, J Patrick Leer 

videos: http://www.youtube.com/daddyleer

Tags: Multiple Sclerosis, spouse caregiver, caregiving, care facility, Cerebral Function Unit, Carer’s Support Group, frontal lobes, Dr. Seuss, Horton Hears A Who, foam cross, Hester-Louise Henderson

Caregiving: a cheese epiphany

     Multiple Sclerosis symptoms are defined clinically but when subjected to interaction can range from odd to phenomenal but always interesting. Outings, I believe, are important for Patti because reality is rich in the stimuli of unknowns. 

     Sunday we made a quick stop at the grocery store. Patti thoroughly enjoys going to the grocery store. It’s never an errand to her, it’s an outing.

    Symptom: visual impairment - Patti is “legally blind”. There is a clinical definition about visual distance, and if you only observed her watching TV you would see her sit within 2 – 3 ft of a 36” diagonal TV screen in order to see it. Yet ‘MS vision’ as I understand it is more like looking through a three dimensional stain glass window with half the pieces missing. Depending on circumstances glimpses from certain range and depth plus the missing pieces filled in by memory can create apparent ‘vision’.

     Taking that symptom out of the clinical and into reality at the grocery store … Deciding that she wants a bag of chips I roll her down the chip aisle reading off the countless options. Suddenly she points and tells me she wants “that bag of UTZ’s potato chips with the wrinkles.” In disbelief, I pace off the distance of 15 feet to the bag of chips she is pointing at. 5X the range of her vision. Handing it to her she holds it about 6 inches from her face while looking at it to make sure it is an UTZ potato chip bag. <grin> Spooky, isn’t it?

     Symptom combo: Dysphagia and Emotional Lability. Dysphagia usually is associated with problems in swallowing and the threat of choking but can also cause speech problems. Inability to control volume is always the most interesting of these. Emotional Lability basically means you never quite know what to expect.  

     … In the dairy aisle I hand Patti the Velveeta cheese that we had come specifically to buy for grilled cheese sandwiches to put in the basket in her lap. Patti appears to ponder it then boomingly announces to me and every other shopper in the dairy aisle that “Velveeta cheese SUCKS!” <grin> With shoppers in the dairy aisle frozen in place by the outburst, Patti continues her cheese epiphany sharing how she always has to eat the stupid Velveeta because everyone else likes it, and it’s not even really cheese. I notice a couple carts starting to quietly inch away and suspect they probably possess some of the evil Velveeta and are trying to escape this cheese Nazi in a wheel chair. <grin> Such symptoms tend to be brief in duration and soon we are back to finishing our errand, minus the Velveeta. <grin>

[Editor's Note: In the quarter century I've known Patti I've never heard her express any feelings about cheese.]

     Where a quick stop at the grocery store on a Sunday afternoon should have been typical almost boring; instead it became a more colorful and interesting moment in time.

Caregiving: "a church moment"

     Yesterday was Sunday and I couldn’t help but reflect on how caregiving + Sunday + church + cognitive symptoms = some interesting experiences.

     One of my favorite such ‘church moments’ was several years ago and involved an intermittent episode of Multiple Sclerosis cognitive symptoms, in particular mental confusion.

     At the offering collection, a teen age girl came up our aisle with a beautiful silver plate which she dutifully handed to the person on the end of each pew who passed it along. Coming to our pew, she handed the plate to Patti, seated on the end.

     Startled and in grateful surprise Patti loudly exclaimed, “THANK YOU, THIS IS VERY NICE OF YOU”. Loudly is an understatement, yelled would be better. Patti cannot always control speaking volume and the more she tries the more opposite it can become.

     Patti balancing the plate on her lap begins going through her “gift” like an excited child might sort through a Halloween candy bag. The young volunteer is flabbergasted and turning red with embarrassment. She politely tries to whisper to Patti that the plate is supposed to be passed along to the next person. Unknown to the poor girl reasoning and such will have no effect on such symptoms.

     Trying to avoid laughing, I pried the plate away from Patti, “the cognitive pirate”, and continued its passage down the pew. I dismissed Patti’s glare of shocked incredulity with a shake of the head and a simple “No, it is not for you!”

     I suspect that young lady “wondered” for quite a while IF the next person she handed an offering plate to would pass it along. <grin>