the curious case of a lawnmower on Mars

Sometimes even after nearly a quarter century I still find myself sitting at the same table with other people but as a MS Spouse Caregiver my chair seems to be in a parallel universe.

I stared speechless as people with mounting enthusiasm babbled on over the ‘how and what’ of NASA landing some new lawnmower on Mars.

Not just any lawnmower but a $2.6 billion dollar mower named Curiosity. Well the only 'curiosity' germane to the conversation IMHO was here Patti was sitting in a wheelchair because of a disease she has had since 1985 named Multiple Sclerosis.

I was told NASA people are a different kind of scientist, they couldn’t cure a disease if it fell on them. OK then what about the wheelchair that has not basically been redesigned in almost 100 years. If I wanted to send it to Mars they certainly could improve it; however they do not perform science on earth.

Anyway more money, $5 billion a month or so, is wasted in Afghanistan far more than the $2.6 billion NASA wasted on Mars. Go harass the military industrial complex. Fine with me, we have no business occupying either place. So now I basically have $62.6 billion for a year (minus unemployment for space workers and some graft for politicians) left to spend on curing MS. Works for me!

Of course that’s my problem I’m stuck in this parallel universe. In the other universe, the real one, since Sylvia Lawry founded NMSS in 1946 after 70 years of fundraising they have managed to raise and invested only $600 million in research and have no cure to show for it. (Wow, that’s less than 1% of the pile of money in my universe).

Before you say I’m being greedy about MS (a rare disease) and am not thinking about the future of everyone. … I have considered what our bright young people might aspire to if we stop invading Mars and Afghanistan. - OMG they might aspire to cure disease on earth!!!!

I for one would gladly start with just one cured disease over all the lawnmowers on Mars.

by Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

multiple sclerosis

young lady with a parasol

Pushing Patti and her wheelchair around a park near her care facility yesterday we both stared as a 20 something young lady with a sun parasol strolled by us.

It felt like two eras of time passing each other, it was kind of cool.

With a few days of rare Fall weather in late August I could actually include Patti in my training for Free To Breath Lung Cancer 5K Run/Walk Harrisburg this Saturday. Believe me after years of MS Walks it is certainly weird to be involved in an event about my own health.

Monday while cool temperatures was unfortunately rainy so training adjourned to that indoor park, Walmart. Tuesday was a stunningly gorgeous sunny and Multiple Sclerosis friendly afternoon.

Our outing/training even had it’s own unique version of the Boston Marathon’s Heartbreak Hill as the sidewalk from park back to Patti’s care facility is a block straight up pushing an occupied wheelchair  … the only way to finish!

by Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

multiple sclerosis care facility

more caring and the culinary arts

This abnormally Multiple Sclerosis unfriendly hot summer has kept ‘outings’ from Patti’s care facility indoors and while trying to make the best of the situation has in part driven my recent experiments with caring and the culinary arts.

In turn I have been reinvigorated to rejoin the teamwork involved in feeding Patti at her care facility, increasing my visits during dinner and help with feeding. Which by the way are never boring. Just last night Patti practically jumped out of her chair when startled by a spoonful of jiggling jello. "That (blankety-blank) was wobbling right in front of my face. It startled me!"  Now laughing and trying to feed her, believe me that jello was doing a whole lot more jiggling.

Bottom line it’s been a refresher course in Patti’s abilities or lack thereof. Which raised the question – was finger food as a function of adaptive self-feeding really ever given much consideration in developing Patti’s care plan?

Anyway I was thrilled to learn that both occupational therapy and speech therapy staff have decided to reevaluate Patti and depending, possibly start to work with Patti again on adaptive self-feeding, in particular finger-food.  

Chatting with the therapists was a treat and sharing my experiments on visits at home on caring and the culinary arts and my conclusions is what the teamwork of the care facility is all about.

Eating must be first and foremost safe with Patti's level of MS progression regardless of who is preparing her meal and feeding her. Evaluating and testing an ability and an idea is critical. As any long term caregiver knows there are endless ‘tricks of the trade’ that work just fine one-on-one for you but often do not translate. 

related entries:

caring and the culinary arts III  July 28, 2012

caring and culinary arts II July 24, 2012

caring and the culinary arts July 08, 2012 

-- 
Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Technorati Tags: multiple sclerosis, caregiver, dysphagia, culinary arts,

18 Outstanding Family Care Resources

Previously I shared in warts and all picture of living with Multiple Sclerosis about an email and UK description of Caregivingly Yours.

Actually that email was all about 18 Outstanding Family Care Resources of which Caregivingly Yours was voted one.

Yes it is a portal sponsored by KwikMed however none of the selected blogs have any relationship. In fact I discovered some new caregiving sites while surfing through my fellow 18.

Normally I might feel slighted about being number 18 out of 18 except that I prefer that number, it is my birth date! And the higher ranked are websites staffed by more than just little ol' me.

Since my own diagnosis of lung cancer I have found searching and/or surfing the Internet increasingly cluttered and noisy. Personally I appreciate it whenever I stumble on such portals as these where someone has bothered to not only check out and confirm that blogs or web sites are even active much filtered for quality of content.

Also IMHO these are an interesting collection of web sites/blogs raging in appeal to the age of caregiver from young to senior and the nature of care from home care to facility care and frankly a unique and wider view of care from both us USA 'caregivers' to our fellow 'carers' across both the pond. 

by Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

caregiver

warts and all picture of living with Multiple Sclerosis

This morning I got one of those emails about “I am pleased to inform you that Caregivingly Yours, has been recognised for excellence …”

Anyway this is less about patting myself on the back or anything but more about George Bernard Shaw’s quote, “England and America are two countries separated by a common language.”

The spelling of ‘recognised’ which I have to fight with Microsoft Word spell check to keep was the giveaway, however  opening the email was an absolute treasure as there was a British description of my blog. 

“A personal journal following the experiences of the spouse of an MS sufferer and their move from home-care to a care-facility. The blog is updated regularly and the author prides himself on presenting a ‘warts and all’ picture of living with MS.”

While “MS sufferer” is an uncommon use in America, it is ‘spot on’ for many. However, I absolutely love the description of me priding myself on presenting a “warts and all” picture of living with MS.  

I liked it so much I added it to my blog header. J God Save the Queen!

Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Technorati Tags: multiple sclerosis, caregiver

channelling Hercule Poirot

With such recent success at home caring and the culinary arts, I thought I would drop in for a surprise visit with the ‘feeding professionals’ at Patti’s care facility Friday and help them feeding Patti dinner.

Passing Patti’s nurses’ station they greeted me and said they had seen Patti go by earlier to the dining room. Entering the assisted dining room, the staff greeted me with “Isn’t Patti with you?”

Having the overview of timetable and Patti’s abilities I know she has not left the building so I dust off my french accent and my impression of Agatha Christie's fictional detective Hecule Peroit and begin my detective work.

Retracing my investigation to her room, courtyard, social and meeting rooms along the way interrogating all the usual suspects I locate Patti in the lobby.

Patti just happily sitting there in 'her now' is startled by my, “Aha! Mon ami – What are you doing here?”

She not only wants to know why am I talking like Pepe Le Pew but throws her parents under the bus, claiming they were just playing Trivial Pursuit with her and left her there.

I continue, “Excuse me! My accent is clearly Hecule Peroit and not Pepe Le Pew and your parents have not been here today. Therefore mon ami you are guilty of zee Multiple Sclerosis - your memory sucks!!!”

Now Patti is laughing too hard to talk, so I push her to the dining room.

Settling her in, getting her tray and sitting down next to her while waving off offers to help from staff  I can appreciate the impossibility of trying to extend self-feeding for any one resident in a facility setting where you have to prepare meals for many.

I fed her spoonful by spoonful a dinner of minced steak, mashed potatoes, and succotash with carrot cake for dessert along with ginger ale, apple/grape juice, and decaf coffee for beverages. Sampling each for myself it was quite good, or “bangin’” as Patti chose to describe dinner.

Yep, our current version of TGIF. 

Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Technorati Tags: multiple, sclerosis,, care, facility

voices never shared Multiple Sclerosis

Some mornings surfing through the news over a cup of coffee I am struck by the imbalance of Multiple Sclerosis awareness, at least to me, … even a recent comment to this blog raised this paradox in social media of what do we know about severe MS unless the caregiver speaks out.

Screaming from magazine racks in convenience stores and grocery store checkout aisles the world learned in late June that an old classic rocker’s son was recently diagnosed with MS and his Mom “won’t let my son die”.

Yet how many noticed a MS Survivor Celebrates 70th Birthday in the headlines of the Daily Local News of Chester County, Pennsylvania.

“For the past 47 years, Frederick Ray Jr. has been nothing but an inspiration to his family and friends. Diagnosed with multiple sclerosis in 1965, Ray celebrated his 70th birthday Sunday at the West Chester Senior Center, a testament to perseverance and triumph against all odds…”

I also can’t help but wonder if it’s because he like my wife is both in a wheelchair and a care facility that the milestone gets no mention by local MS organizations.

Then over on the left coast I read in the Sacramento Press of the closing run of a play, Voice of Good Hope in its Final Run about the life and times of US Congresswoman Barbara Jordan (1936-1996), who at the highest levels of power and riveting oratory on the National stage concealed her MS.

Jordan began to experience MS symptoms in 1973 …eventually requiring a wheelchair. She kept the state of her health out of the press so well that … President Bill Clinton stated that he wanted to nominate Jordan for the United States Supreme Court, but Jordan's health problems prevented him.

“Cruel physical decline” is how theatre critics describe the portrayal of Multiple Sclerosis.

So back to the original thought unless a caregiver, or playwright, speaks up what do we know about those with severe symptoms of MS? 

“…People writing songs that voices never share

And no one dared

Disturb the sound of silence …”

Sounds Of Silence by Simon & Garfunkel

Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Technorati Tags: multiple sclerosis, caregiver

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!

related entries

caring and the culinary arts II July 24, 2012

caring and the culinary arts July 8, 2012

by Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Technorati Tags: multiple sclerosis, caregiver, dysphagia, culinary arts,

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.

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

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Technorati Tags: multiple sclerosis, caregiver

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.

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.

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

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Technorati Tags: "Mulitple, Sclerosis", caregiving, "Penn, State", NCAA

My Towering Slim Geek Sidekick

Happy 10^th 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

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Technorati Tags: Dell, computers, caregiving

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 27^th Anniversary.

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

by Patrick 

Caregivingly Yours, @ http://caregivinglyyours.blogspot.com/

Lung Cancer Survivor @ http://lung-cancer-survivor.blogspot.com/

Technorati Tags: multiple, sclerosis, MS, caregiver,

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.

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 

videos: www.youtube.com/daddyleer

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".    

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 

videos: www.youtube.com/daddyleer

6 comments:

hugsdoodlewacky said...

(((((((((((((((((HUGSTOYOU))))))))))))))))))))I hope you all have a nice Happy Thanksgiving.

Monday, November 19, 2007 4:02:00 PM EST 

jckfrstross said...

have fun:)

Deb

Monday, November 19, 2007 5:06:00 PM EST 

bamawmn46 said...

Well... enjoy your trip, but watch out for those cannibals!! <grin> Keep  your doors locked!
Jackie

Monday, November 19, 2007 5:33:00 PM EST 

bgilmore725 said...

It sounds very dangerous! bea

Monday, November 19, 2007 5:33:00 PM EST 

analeighia said...

.....good trip to take and good medicine for you!

Tuesday, November 20, 2007 8:01:00 PM EST 

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 27, 2008 5:24:00 PM EDT