summertime and memory is melting

“There ain’t no cure for the summertime blues” especially when living with Multiple Sclerosis. Research reports that memory and cognition melt in summer and not even air conditioning can help.

“cognitive scores were 70 percent lower among MS patients on warmer days — those with an average temperature of 66° F (18.9°C) — than on days when the mercury hit a mean of only 33°F (0.5°C)”

For MS Patients, Memory Melts in Warm Weather

Research was done by the Kessler Foundation in West Orange, NJ, “where reseach and program centers are linking science and grantsmanship leading to discoveries that are changing the lives of people with disabilities”.

While Jersey Shore tourism must be wondering how the Kessler Foundation missed the memo about ‘promoting’ summer, anecdotally our worst attempts over two decades to create MS family outings have involved hot weather.  Of course, in those earliest days the only research available to us was ‘trial and error’.

While MS changes everything, surviving is about adapting to change.

Walking, pushing, and rolling through the cool of a summer morning is not unlike enjoying an ice cream cone before it starts to melt.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

short term memory Multiple Sclerosis

“Problems with short-term memory” is one of those phrases that people from professionals to friends & family nod at or make murmuring sounds of consensus that it’s “common with MS”. Yet does anyone have a clue as to what exactly is short term memory, much less problems? Psychoscientists and psychobabbleists fill books on the conscious mind, short-term vs long-term memory, and primary vs active memory. Brits even offer a category of “dottiness” (amiably eccentric).

Long story made short, lesions in multiple areas of the brain, atrophy of damaged brain tissue, and short circuiting of nerves within the brain transmitting memories all can contribute to and confound memory problems associated with Multiple Sclerosis.

Recently I had the pleasure of sitting in on a memory therapy session at Patti’s care facility. Even when the session began with the set back of Patti being unable to remember the therapist’s name, they stayed with the friendly routine of memory exercises, often interrupted with laughter. Conceding the obstacles of MS and memory, the therapist remarked that while Patti is not her most successful patient she is her most enjoyable.

There is no cookie cutter MS patient and recommended encouragement in mentally stimulating activities like crossword puzzles, word games, and regular exercise are obviously thwarted by Patti’s other MS related challenges of visual impairment (legally blind), non-ambulatory and dependency on others. As are most low tech and high tech tips and tricks for helping short term memory.

Observing therapy it reinforced my years of intuitive involvement of Patti in outings of the minutiae of life, from errands to family to fun. I always believed that even though dependent it should not preclude her from remaining engaged. Though I concede this is caregiver time demanding.

Not unlike physical exercise the brain needs a work out routine. Memory in MS is so much more than forgetting why you walked into a room. It ripples into self-mage, concentration, reasoning, word finding, conversation, and safety.

When it comes to memory, maybe it’s less about Freud and more about RuPaul:

“You better work it, girl ... Work, Sashay! Shante!” 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

WE laugh in the NOW. I remember for us both.

Pondering the dichotomy of change and caregiving over morning coffee a robin alighted on the snow outside my window. Omens are too weird over the first cup of coffee. I left Stardust to monitor nature’s contradictions while I took my head for a walk.

A month ago I shared in an entry, Whac-a-problem, about a change in Patti’s room assignment at her care facility.

While the change was a week of angst for me, Patti on the other hand summed up the transition, “What room?”

Why does it rub me wrong when a friend shares how much insight they have gained into cognitive decline of a 50 something woman from a fictional novel? Is fiction more ‘understandable’ than real life? Maybe it is.

We have been living a battle with cognitive decline, memory loss, and dementia-like symptoms of Multiple Sclerosis for almost 10 years. Real life is not only exhausting but long, slow and filled with wildcards. It is not as easy to gleam information from.

I think when she cannot. This role I do not enjoy. You pressure yourself so much more when required to think for another.

As a caregiver I replace and keep replacing that which is lost. Is it sad if Patti cannot remember some outing or activity shortly after it happened? I cannot answer for her. I simply conjure up another ‘now’.

‘We’ laugh in the NOW. I remember for us ‘both’.

Tell me grasshopper which is more important, the life we live or the life we remember? 

 Caregiver's Perspective: Multiple Sclerosis and Cognition 

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

cognitive function multiple sclerosis

“It’s one of the most sensitive topics among people with MS—we’re talking about how MS affects your mind, about cognitive function …”

“Cognitive changes are thought to affect about half of those who have MS ….”

MS and the mind: The latest research on cognitive function 

Reading through the above article in National Multiple Sclerosis Society MOMENTUM magazine, winter ’09-’10, I had mixed feelings. Certainly I was glad to read of 4 pages of current and pending research yet I was baffled as to why the ‘major players’ have been so slow in coming around.

Last winter the Multiple Sclerosis Foundation invited me to write an entry for their MS FOCUS magazine entitled A CAREGIVER’S PERSPECTIVE, MS AND COGNITION
   “…We were swamped in physical adaptations, and in the early and mid-1990s, cognitive problems associated with MS were simply not mentioned very often…”

In the NMSS Momentum article under “treating cognitive change” they mention looking at drugs used to treat Alzheimer’s disease. A study of donepezil (Aricept) is recruiting people with all types of MS.

Six years ago Patti’s nurse practitioner suggested trying Aricept. Her neurologist hemmed and hawed about lack of research but acquiesced. Not only has Aricept slowed cognitive progression to the eye of the observer but it has demonstrated through MRIs a slowing of rate of cerebral atrophy.

The frustration with cognitive function is that the person affected is the last to be aware. Family, friends, and medical contacts have to find a way to cross this line. I am not sure that patience is a virtue in fighting this symptom of Multiple Sclerosis.

“Of all the things I've lost, I miss my mind the most” Mark Twain

video: Multiple Sclerosis cognitive challenges (3:23)

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 ...

MS and Cognition: a caregiver's perspective

Thank You, to the Multiple Sclerosis Foundation for including “our story” in their Winter 2009 issue of MSFocus Magazine. View “A Caregiver’s Perspective: MS and Cognition” in MSFocus on line, pages 36 and 37.


Or view the article below:

Our then elementary-school-age daughter discovered the first clue: Her mom laughed hysterically at the word “brick.” Then came the day I opened our monthly credit card bill to find $2,000 in charges from a home shopping network.

Homecare agencies cancelled our aides due to incidents involving my wife, Patti’s, verbal and physical outbursts. Finally, I returned home one afternoon to discover our stove top on fire while Patti sat unconcerned or unaware at the kitchen table.

Looking back, were there earlier clues that my wife’s MS symptoms might not stop with the physical? Yes, but who knew to look? We were still reeling from the physical symptoms of Patti’s diagnosis and trying to learn to live with MS as a family. In a few short years, my wife had become wheelchair-bound. We were swamped in physical adaptations, and in the early and mid-1990s, cognitive problems associated with MS were simply not mentioned very often.

Now researchers tell us that MS can, in some cases, cause permanent cognitive problems. In Patti’s case, those problems are profound. (click to continue …)

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: multiple sclerosis and cognition

Special thanks to the Multiple Sclerosis Foundation for enabling our story to bridge from the blogosphere to print media.

"A Caregiver’s Perspective: MS and Cognition" will appear in their Winter 2009 edition of MSFocus Magazine. Below is an excerpt:

"Our then elementary-age daughter discovered the first clue: Her mom laughed hysterically at the word “brick.” Then came the day I opened our monthly credit card bill to find $2,000 in charges from a home shopping network. Homecare agencies cancelled our aides due
to incidents involving my wife, Patti’s, verbal and physical outbursts. Finally, I returned home one afternoon to discover our stove top on fire while Patti sat unconcerned or unaware at the kitchen table.

Looking back, were there earlier clues that my wife’s MS symptoms might not stop with the physical? Yes, but who knew to look? We were still reeling from the physical symptoms of Patti’s diagnosis and trying to learn to live with MS as a family. In a few short years, my wife had become wheelchair-bound. We were swamped in physical adaptations, and in the early and mid- 90s, cognitive problems associated with MS were simply not mentioned very often..."

After years of journaling it was fascinating to work with a different medium including submitting copy, editors, revision, and such.

This journal / blog began, in part, four years ago because the challenges of people with progressive and severe MS, their caregivers, and families were invisible to mainstream MS publications.

Thank you, Multiple Sclerosis Foundation for this opportunity.

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