Saturday, July 28, 2012

caring and the culinary arts III

Trying to be as scientific as the culinary arts and caregiving can be I expanded my experiments with finger food fruit bowl dinning to include those notorious chicken tenders and even boneless buffalo wings.

Whereas fried chicken tenders had caused chipmunking when eaten as an entrée they had no such effect when mixed into a finger food fruit bowl of cut up peaches, cut up strawberries, and grapes. Likewise when I cut up boneless buffalo wings again no chipmunking.

Yes, peaches have been the foundation of all these bowls. That is because peaches are Patti’s favorite, and when sliced up into bite sized pieces create a wonderful variety of shapes.

My vigilance in monitoring Patti’s eating, if anything, is increasing with these experiments; however what is extraordinary is that finger food fruit bowl dinning is dramatically reducing the need for verbal cuing.

Conventional wisdom and people with alphabet soup after their names would advise you with cookie cutter solutions of “minced food”, “feed the patient” or “puree”. I myself previously would never leave Patti with such freedom to self feed. … but for some reason it is working to extend this ability just a little bit longer.

I can only conclude:
  1. To hell with table manners - finger food gives Patti’s one remaining able hand a sense of ability vs struggling with a utensil 
  2. The combination of senses empower, touch and taste compliment sight which is impaired. 
  3. Fruit has built in liquid improving swallow-ability 
  4. Somehow the brain recognizing and processing the variety of shapes and textures in addition to the changing tastes must affect dysphagia in a positive way, almost as if putting it on hold.
At this point it’s time to enjoy what works. Pull up a bowl and get out your fingers. Welcome to Chef Patrick’s finger lickin’ good 'Multiple Sclerosis friendly' summer kitchen!
fried chicken tenders cut up in bowl of cut up peaches, cut up strawberries, and white grapes
related entries

by Patrick Leer
Caregivingly Yours, MS Caregiver @

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Friday, July 27, 2012

Multiple Sclerosis comparing apples to oranges

Reading about or hearing about others with Multiple Sclerosis may be best described as comparing apples to oranges. The diversity of symptoms and progression is that dramatic.

Wednesday pulling into Patti’s care facility to pick her up for a dinner outing, I notice her parent’s car leaving the parking lot. In just the minutes it takes to walk into her room and greet her I ask, “Who were you just visiting with?”

Patti: “My hubby I think.”
Me: “Then who are you visiting with now?”
Patti: (laughs) “I don’t know my memory sucks.”

And so does her visual impairment as I am standing right in front of her wheelchair. Multiple Sclerosis – it never gets any easier to understand.

Earlier that day I had read on a Facebook friend’s wall an anniversary wish:
♥ Happy 25th Anniversary!!! I love you! ♥

Except it was not a typical wish, it was from one spouse with MS (and a similar EDSS >8.5 scale score to Patti) to their caregiver spouse.

How can this be? Progressions of Patti’s MS physical and cognitive symptoms have prevented her from ever using the Internet, email, or social media. By the early 1990’s Patti’s MS speech and memory issues absolutely confounded the earliest voice programs.

Where the technology age has empowered many caregivers and extended homecare by enabling communication it has isolated Patti because of her MS symptoms. Patti can no longer even successfully use a telephone.

still life painting of apples and oranges by Paul Cézanne a French artist and Post-Impressionist painter (1839–1906)
MS progression is no more predictable than it is standardized. With the diversity of MS symptoms and varying progression and equally important the range in abilities and resources of MS caregivers, I can only hope that those new to Multiple Sclerosis and/or MS caregiving never make the mistake of faulting an apple for not being a good orange.

by Patrick Leer
Caregivingly Yours, MS Caregiver @

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Tuesday, July 24, 2012

caring and culinary arts II

Between bowls and bowl games and the NCAA channeling memory loss by erasing 14 years of football victories as part of its sanctions against Penn State University football, it was worth rummaging through storage for this 25 year old poster, “The Few … The Proud … The Lions”.  Patti is a Penn State alum.
Penn State National Championship poster Fiesta Bowl 1987
Multiple Sclerosis visually impaired, my fellow holder got laughing so hard at my improvised description of the poster in my best sportscaster affected voice that I had to use her lap to support her end of the 1987 Fiesta Bowl victory poster. 

Of course to us the preeminent bowl is the bowl I use for my continuing experiments with caring and the culinary arts. Recently we tried reverting to a more conventional self-feed meal where food bites are similar, such as chicken tenders as the main entre.

Sure enough Patti reverted immediately to what I call ‘chipmunking’ her food. She just keeps putting pieces in her mouth forgetting either to chew or swallow. Unmonitored this can quickly create a choking danger. And this is why in the care facility era she has progressed to being fed in the assisted dining room rather than allowed to try and self-feed.

peaches, strawberries, black grapes, raspberries, chicken breast grilled in Italian dressing
Soooo all the more I wanted to try reverting back to using varying shapes, textures, tastes and color of food pieces to try and keep her mouth rebooting (for the lack of a better word) with each piece and extending her ability to self-feed just a little longer. It worked like a champ just as it had last week. Today’s bowl featured Patti’s favorite cut peaches, black grapes, cut up strawberries, raspberries, and cut up chicken breast grilled in Italian dressing. No chipmunking! No choking! I wish I understood why.

With my own attention and time increasingly consumed by living with lung cancer, my lung cancer odyssey, I’m discovering that keeping all the balls in the air is a bit more challenging when suddenly I am one of those balls … and yeah it’s just a bit harder when Patti cannot remember. 

by Patrick Leer
Caregivingly Yours, MS Caregiver @

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Monday, July 23, 2012

My Towering Slim Geek Sidekick

Happy 10th birthday to my Dell 8200 Dimension!

10 years old is more than half the time I have stared into the Internet. When you are old enough to remember standing out with all the neighbors staring up into that October Sky as Sputnik moved across what used to be called the heavens, “The Internet” still seems a novelty.

Part muse, part machine, even part friend … my Dell 8200 Dimension has been my trusty side kick through every one of these blog entries.

Delivered in July 2002 it was my only cyber side kick until late 2011 when it went into semi-retirement, now sharing duties with a young Dell Inspiron 570 purchased off the floor at Best Buy.

I’ve embraced no smart phone, nor tablet, nor even lap top. Beyond my Dell Desktops, I’m happy to have a simple cell phone that flips open, hoping that one day Scotty will beam me up.

Eventually it’s ancient speed further slowed by anti-virus programs and more just made slow motion more like stop action.

WARNING GEEK ALERT: It’s a Pentium 4 at 2.26 Ghz with 256 MB of RAM

Nearly got whip lash the first time I took the Dell Inspiron 570 out for a drive on the Internet over our Verizon FIOS connection.

Semi-retired now the Dell 8200 Dimension serves primarily as data back up, and I run it off line for some older programs I am found of.
“In a word: Wow! The Dell Dimension 8200 contains almost everything you'd want in a PC.” PC Magazine May 7, 2002
Over the decade it surfed the Internet, was shared with a high school aged teen ager, stored financial records, filed taxes, stored and shared digital pictures, created and uploaded movies, scanned created and stored a decade of medical records not only simplifying but empowering Multiple Sclerosis spouse caregiving, composed eulogies and birth and wedding congratulations, sent and received email, downloaded music both legal and sometimes not exactly … and never complained.

Normally I would tell anyone you cannot believe reviews but 10 years later, in a word: Wow!

Patrick Leer
Caregivingly Yours, MS Caregiver @

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Saturday, July 21, 2012

27th wedding anniversary

A Contemporary 27th anniversary gift has a theme of Sculpture. While we could waste pages arguing the art and function of the visual arts, what could be more apropos than the plastic pole blocking people from parking in hash marks next to wheelchair accessible van parking at Hollywood Casino?

Barrier free makes Hollywood Casino accessible but when some one is as visually impaired as Patti a Super Jackpot Party slot machine cranking out an endless stream of disco music and frequent amusing interactive bonus rounds makes it downright entertaining? You only have one 27th Anniversary.

When a couple hours of play cost us a whopping $2 in total gambling losses, what’s not to like.

by Patrick 
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Saturday, July 14, 2012

unrequited caring

“Melancholy hearts flutter with unrequited care”
Restless by C Rossi-Kenyon

While caring may be unrequited the most important thing I must remember (because I can) is that for Patti it’s not a choice.

Progression of Multiple Sclerosis cognitive symptoms, including dementia like symptoms including memory loss, prevents her from dependable awareness, much less concern, about my health and well-being or anyone’s.

Progression of MS physical symptoms prevents her from physically caring for anyone (much less herself). 

Unrequited ‘love’, now there is something we all know about, but is love the same as caring. Who amongst us cannot tap that emotional reservoir of unrequited love? It can get crowded drinking from that keg of emotions sharing with yourself, Charlie Brown, and most of history’s romantic poets.

But what about unrequited caring?

What about caring but being physically unable to help? Trapped inside your body unable to help.

What about caring but being cognitively unable to help? MS is not the only disease with progressive memory loss. The Alzheimer’s Association estimates that there are 500,000 Americans younger than 65 with Alzheimer’s and other dementias. One out of eight people age 65 and older (13 percent) has Alzheimer’s disease.

picture of caregiver tebowing behind wheelchair
My own diagnosis this year of lung cancer, surgery, and recovery rather dramatically accentuated all this. Yes, I find myself “tebowing” in gratitude for the care facility era of living with MS because unless reminded, including a brief refresher version, Patti remains oblivious in the now of the recent then. Patti was safe and unworried through my struggles – the way it should be.

Unrequited love? We can all rally around an anthem of she/he done him/her wrong. … Unrequited care? We can only imagine the care robbed by failing abilities of those who cannot remember what or who they care about.  

I may not be a smart man but it seems to me song writers and poets may have had it easier before modern medical science discovered it could prolong life but not the quality of living … and ‘somebody that I used to know’ was a choice and not progression of a medical diagnosis. 

Caregivingly Yours, Patrick Leer 

Wednesday, July 11, 2012

midget albino cannibals of Boonton

   (I am not sure what this says about the Internet and Googling but the original entry was viewed for over the 1,000th time some time today in this blog about Multiple Sclerosis caregiving. ... P.T. Barnum, I imagine, would have loved the Internet.)
----- Reposted from November 19, 2007
midget albino cannibals vs pilgrims and indians

Spending Thanksgiving with the Pilgrims and Indians? Personally, I’m adventuring to Boonton, NJ, the home of “midget albino cannibals” as reported in "WEIRD NJ".    
A few years back a friend's mother was driving down a back road with her two kids in her car. ..
While Patti and our daughter Megan, who will be acting as primary caregiver, will be safely spending Thanksgiving with Patti’s parents and family in Pennsylvania, I will be charging off to visit relatives on my annual quixotic drive through the fabled people and places of New Jersey. 

Caregivingly Yours, Patrick Leer 


hugsdoodlewacky said...
(((((((((((((((((HUGSTOYOU))))))))))))))))))))I hope you all have a nice Happy Thanksgiving.
jckfrstross said...
have fun:)

bamawmn46 said...
Well... enjoy your trip, but watch out for those cannibals!! <grin> Keep  your doors locked!
bgilmore725 said...
It sounds very dangerous! bea
analeighia said...
.....good trip to take and good medicine for you!
dancinginlife13 said...
I been living in boonton for years. There are no albino midgets. I go in the woods all the time. Boonton is an old town if you want to go look for them go ahead.

Sunday, July 08, 2012

caring and the culinary arts

We once dined in restaurants like any other couple. We once did a lot of things before Multiple Sclerosis began stealing Patti’s abilities.

That was decades ago, this is now. Patti primarily eats or more accurately is fed at her care facility.

It’s no longer about fine dining it’s about safety as trained feeding assistants help Patti through meals in assisted dinning. The kitchen also stacks the deck preparing easier to swallow meals including mincing entries.

Progression of MS symptoms not only confounds her ability to chew and swallow (dysphagia) but see her food (visual impairment). Her failing ability to control her hands and arms makes getting food to her mouth with utensils an exercise in futility.  

While their teamwork is extraordinary, it seems to me that every once in a while texture diets and feeding guidelines can use some one man showmanship in the kitchen. Interestingly the care facility era ever challenges me to become better.

So I found myself inspired on the hottest day of the year to create a summer finger food entree specifically for Patti to try and enjoy at home. One handed finger food I should say, only her right arm works.
finger food bowl of grilled boneless chicken breast cut into squares with cut up peaches, grapes, and blackberries

Why not grilled boneless chicken breast with a bowl of cut up fresh peaches, blackberries, and white grapes? My thinking was the mixture of berries and fresh fruit would provide an array of textures and shapes to stimulate her sense of touch over failing vision. The kaleidoscope of flavors I hoped would keep refreshing her cognition and attention. To prevent the chicken from seeming bland in contrast but not dominating as in BBQ, I grilled with a citrus stir-fried sauce (orange, pineapple, and grape) before briefly chilling and cutting up into bite sized squares.

The secret ingredient is verbal cueing … if you were nearby you would have heard “bite” … “chew” … “swallow” … interspersed with “now here take a sip of your drink to wash it down”. Verbally cueing Patti as she eats I sound more like a coxswain coordinating rowers as a rowing shell knifes through the water.

“Bangin’!” reported Patti as she safely finished her self-fed, one-armed, finger-food dinner bowl.

Caregivingly Yours, Patrick Leer 

Friday, July 06, 2012

cat shit cazy

Arriving to pick Patti up early on the morning of July 4th from her care facility I was struck by the apparent contradiction of a laughing gregarious Patti and the progression of Multiple Sclerosis short term memory loss symptoms which had repeatedly erased repeated staff explanations for why she is up, changed, and dressed for an outing. “You’re all wingnuts!” according to Patti.

In route, experimenting with a question or two about my own diagnosis of lung cancer and surgery three months ago reveals she has no memory and/or resulting worry or concern.

Briefly I ponder the concept of memory loss and unrequited caring but decide that’s for psychobabblists over lattes.

Instead I decided to entertain Patti by sharing a recent revelation -  the secret to approaching the quarter century club as a MS spouse caregiver is … (dramatic pause)… I’m cat shit crazy.

I began my ramble by explaining that I have been reading about Toxoplasma Gondii in news headlines and found myself reminiscing …

road side marker "Shadow Of Death" the name applied to this locality by Conrad Weiser and other travellers on the Frankstown Path in the mid-18th century. It's local significance is now unknown.
I first heard of T. Gondii in 1987 when Patti was pregnant. Her OB/GYN raised the concern that some parasite thingamajig could transfer from cat feces to Patti to fetus (now known as our daughter Megan).  … With visions of the thingamajig from the movie Alien popping out of Patti’s stomach dancing in my head I had no problem assuming exclusive cat litter duty.

I just never realized that apparently the offer never ends kind of like offering to send peace keepers to Afghanistan.

Then after Patti was hospitalized with her first Multiple Sclerosis exacerbation in 1989 her neurologist also raised concerns about ol’ T. Gondii lurking in the cat litter because MS is an autoimmune disorder.

Bottom line I have heroically thrown myself on that grenade of the litter box over 9,000 times over the spouse caregiving decades and now apparently I am medically and certifiably cat shit crazy. – Explains everything!

“Explains everything … and more!”, Patti emphatically adds after catching her breath from laughing.

Curiously laughter seemed to reduce short term memory loss. Why not millions to study that instead of litter boxes? 

Caregivingly Yours, Patrick Leer 

Wednesday, July 04, 2012

when tradition is not accessible

How we celebrate holidays are traditions. I mean there is no law about how one is to celebrate the 4th of July for example. Yet unquestionably there are pressures.

Holidays like most things are biased toward able bodied able minded celebrations. When that is not your life we adapt.

First and foremost heat and humidity is synonymous with the 4th of July and also public enemy #1 for Multiple Sclerosis, something has to give here. We adapt making the 4th of July more MS friendly by turning it into a morning holiday.

Parked in the shade of a weeping willow tree Patti was close enough to see and interact with crafts and contestants in Anything Floats race in Boiling Springs, PA … while the temperature was still only 78˚F (25.5 ˚C). Later as the temp neared 100˚F (37.7˚C) Patti was already enjoying her air conditioned siesta!
Anything Floats July 4 Boiling Springs 38sec

In this care facility era we are blessed with teamwork getting ready. Having help with Patti who is not only non-ambulatory but unable to assist with any of her activities of daily living is a godsend. Arriving to find Patti up, changed, dressed, and transferred from her bed to her wheelchair is immeasurable in the effort and stress it saves me and empowers our outing.

Progression of MS symptoms has unquestionably affected outings over the years.

Duration for example is affected by bowel and bladder incontinence. With progression, it’s not about finding an accessible commode but about leaving to find a bed to transfer Patti to and change her Depends and clothing.

Even sitting upright in her wheelchair for long periods of time is ‘complicated’.

Dysphagia puts her at increased risk of choking. Holidays and the hospitality of food seem to go hand and hand. Large loud gatherings with food are not fun as my vigilance must be undivided.

Blend in heat and each and every symptom above only worsens.

Sooooo why even get out of bed? Simple to go where no one has gone before.  Some follow traditions, we create new ones.

Caregivingly Yours, Patrick Leer 

Tuesday, July 03, 2012

no one deserves to die

“1 in 14 Americans will be diagnosed with lung cancer this year that is 12 of the average Facebook user's 172 friends. Of which only 2 will survive more than 5 years.”

I am one of those 1 in 14 Americans.

Will I be one of the few to survive more than 5 years?

“Many people believe that if you have lung cancer you did something to deserve it...”

The Lung Cancer Alliance recently launched a bold awareness campaign ... NO ONE DESERVES TO DIE
Help spread the word 

Patrick Leer
Caregivingly Yours, MS Caregiver @

Monday, July 02, 2012

script writer caregiving

As a spouse caregiver of a quarter century, I find myself jumping up out of my chair sometimes over the fictional portrayal that romanticizes the choice of caregiving.

There is nothing romantic about spousal caregiving. Nor should anyone be demonized for not wanting the challenge.

But what do I know; I’m not making the big bucks writing what millions ‘want to’ see and believe. I just try to live it. 

A blog I enjoy, Kaleidoscope Muff, wrote recently that watching the closing minutes of Rizzoli and Isles ‘Welcome to the Dollhouse’ episode on Turner Network Television (TNT) last week she was “reminded how I feel sometimes. I see that look of pity on someone’s face, and I want to smack them”.

Curiously I had seen the same closing scene and saw it totally differently (good writers craft scenes to play to all audiences) I saw a lack of willingness on the part of the injured veteran to trust Rizzoli to care and support. Rather than pity I saw Rizzoli (as possible caregiver spouse) hurt by the lack of trust by her friend and lover.

Then in yet another blog I enjoy, A Bench With A View, I found a book review of 'Travelers Rest' by Ann Tatlock another story involving a character returning injured from war and another character “determined to honor her commitment”.

I just pray the real women and men returning from war with injuries and their families and friends are not being trivialized and stereotyped by what readers or viewers ‘want to see’.   

Here in the real world …

With Friday afternoon temperatures of 99°F (37.7°FC) and a heat index 109.9°F (43.3°C) or beyond ‘MS unfriendly’ levels sometimes escaping into fiction plus real air conditioning actually can be the best of possible worlds.

Decades ago before Multiple Sclerosis Patti enjoyed watching the original Dallas on Friday evenings. ‘Dallas 2012’ airs nowadays after her MS bedtime but through Verizon FIOS TV ‘on demand’ we can control time.

JR Ewing (still portrayed by Larry Hagman) using his long term care facility room to plot revenge for control of Southfork  … priceless!!! 

Caregivingly Yours, Patrick Leer 

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