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 

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.

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 

videos: www.youtube.com/daddyleer

cat shit cazy

Arriving to pick Patti up early on the morning of July 4^th 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 …

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 

videos: www.youtube.com/daddyleer

when tradition is not accessible

How we celebrate holidays are traditions. I mean there is no law about how one is to celebrate the 4^th 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 4^th of July and also public enemy #1 for Multiple Sclerosis, something has to give here. We adapt making the 4^th 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 

videos: www.youtube.com/daddyleer

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

BLOGS:

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

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

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 

videos: www.youtube.com/daddyleer

when an adult child has Multiple Sclerosis

Without premonition, I swear, my last entry shared a Multiple Sclerosis journal I had found written by an adult child about her Mother’s diagnosis with MS, entitled MS Recess.

Then suddenly screaming out from the cover of the latest People Magazine is the story of a Mother facing her adult child’s diagnosis of MS, “I Won’t Let My Son Die”.

All these different perspectives have been long overdue. 

Living with MS has been our life for almost the last quarter century. Were we really ‘living with MS’ as a family or rather the ‘collateral damage’ of MS, all along? 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

when a parent has multiple sclerosis

“Because life did not give me a manual when it gave my Mom MS” … This banner from a blog entitled MS Recess captured my attention as I began reading the thoughts and experiences of a young woman sharing the changes to a family.

Not only is it powerful but rather unique in that her Mom was diagnosed relatively recently, 3 years ago, and at a later age of 56. So the entire family dynamic is almost two decades older than ours at the geneses of living with Multiple Sclerosis.

The blog author was 25 when MS joined their family; our daughter was 18 months when Patti was hospitalized with her first MS exacerbation 22 years ago.

Our daughter has never known her Mom as an able bodied person.

The blog author refers to her Mom as a best friend and how hard it is to watch the changes.

The blogosphere can offer limitless views of living with Multiple Sclerosis. Yet no mirror in the universe reflects quite like children (of any age) and not enough is heard from them.

I encourage you to drop in for some MS Recess …

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

nonambulatory vs bedridden Multiple Sclerosis

“Bed patient”, “nonambulatory” or “bedridden” are words not only associated with but that define the more advanced stages of Multiple Sclerosis.

Back in the 1950’s, Dr. John F Kurtzke developed the Disability Status Scale for people with Multiple Sclerosis. Scores range from 0 = normal neurological exam to 10 = death due to MS.

Using the terminology of the Expanded Disability Status Scale (EDSS) revised by Kurtzke in 1983, we can see how much “bed” essentially dominates scores  …

  8.0 “Essentially restricted to bed or chair or perambulated in wheelchair…

  8.5 “Essentially restricted to bed much of day…”

  9.0 “Helpless bed patient …

  9.5 “Totally helpless bed patient …”

10.0 “Death due to MS …”

OK that was health care jargon circa 1983 but what about today?

The most current distinctions I could find were in The Health and Safety Code of the State of California amended in 2010 to address nonambulatory vs bedridden.

The specific difference has to do with ability to reposition in bed:

“residents/clients who need assistance in transferring to and from bed (but who do not need assistance in turning or repositioning in bed), shall be considered nonambulatory … Bedridden means persons who do need assistance to turn or reposition in bed”.

Patti cannot transfer unassisted to and from bed nor turn or reposition in bed. Additionally challenged to effectively swallow/eat … on paper she might appear to almost top the charts. Yet with the teamwork, technology and attention of 24/7 care facility era, Patti is far from a “helpless bed patient”.

I cannot help but wonder how much the availability, level, and commitment to care and support plays a role in the most advanced stages of MS?

‘Helpless’ denotes a patient’s physical abilities or lack thereof from progression of MS.

God help us all if Kurtzke ever tried to quantify the caring choices of family and friends of those with MS.

related entry
MS Caregiving - reframe your idea of normal

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

making noise for lung cancer

Lung cancer is the number one cancer killer in America … this one reoccurring fact kept leaping out of the screen as I researched myths and facts about lung cancer.

Yet despite claiming more lives than any other cancer, lung cancer receives comparatively little research funding or even attention.

Lung cancer kills more women each year than breast, ovarian, and uterine cancers combined. But unless you live under a rock how can you miss the shelves of pink product packaging during breast cancer awareness month.

The American Cancer Society’s defensiveness over their silence and underfunding of lung cancer only seems to add to the incongruity.

Is it the stigma of smoking? … anyone even non-smokers can develop lung cancer. Lung cancer in ‘never-smokers’ is now considered the 6th most common cause of cancer deaths in the United States.

Firefighters and emergency responders are at increased risk of lung cancer. 


Sitting in traffic puts you at risk. World Health Organization reports that "diesel exhaust IS a cause of lung cancer" and gasoline exhaust is "probably carcinogenic to humans."

Is it an age thing? … lung cancer can strike people of any age including children.

So why is lung cancer overlooked and underfunded? … too much whistling past the graveyard and too little research  … or are too many advocates simply silenced by the low survival rate?

Our family is one of almost a quarter of a million families that will receive a lung cancer diagnosis this year.

160,000 Americans will die this year of lung cancer.

Lung Cancer Awareness (1 min 48 sec)

It’s time “to drag lung cancer out of the shadows and focus public attention on this cruel and unrelenting killer”  Leaders of the Lung Cancer Free World

related entry:

when caregivers get sick - lung cancer

Patrick Leer

BLOGS:

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

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

Multiple Sclerosis: public service announcements 1990's

Images of barbed wire and chain or a voiced over question asking who would be there to pick up the pieces of your life shattered by Multiple Sclerosis … it was a different image of MS projected in advertising two decades ago.

These two 'vintage TV' 30 second Public Service Announcements (PSA) show a frightening portrayal of MS …

USA ... MS Society (1994) “Pray”

UK ... MS Society (1990) “A Hope in Hell”

Patti was diagnosed in 1985 with ‘probable MS’. Not only did we watch that US PSA when originally aired but it was already true for Patti.  

The word “cure” dominated early fundraising slogans, e.g. walk for a cure, cure MS, fight for a cure, read for a cure, etc.

Changing slogans and advertising over the decades seems a bit like lowering the bar.

Certainly the advent of “progression slowing” medications for the newly diagnosed justified changes yet at what level does the bigger picture risk leaving behind those more progressed.

Then again communication challenges increase with progression and the voices of the more advanced stages fade away … unless others speak up, not unlike the haunting unanswered question through time “who will be there to pick up the pieces?”

It was a fair question then, is a fair question now, and always will be a fair question ... until the cure is found.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

Dr. Troy Moritz, DO

To paraphrase the most interesting man in the world "I don't always have surgery, but when I do, I prefer Troy Moritz, DO. Stay healthy, my friends."

Previously in this journal I have written about my successful lung cancer surgery and recovery. Yet to call it mine is to leave out the major player in the story, the thoracic surgeon Troy A. Moritz, DO, PinnacleHealth Cardiovascular and Thoracic Surgery.

What impressed me the most about this man were his people skills. He took the time to know me before he cut which I believe better enabled me to return to who I was by using minimally invasive procedures.

Surgery is scary and maybe more so to those in the waiting room because the unknown is even scarier. Dr. Moritz made the time when I was unconsciously oblivious to keep our daughter more than informed almost feeling involved. While I remember nothing, she got to see pictures of his hand in my lung. J

Enough of me, how about I let you hear and see him speak for himself in his 2 minute You Tube video:

Patrick Leer

BLOGS:

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

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

Ann Romney, World Multiple Sclerosis Day Video

For World Multiple Sclerosis Day, Ann Romney and her family share their thoughts on her struggle with the disease in this 90 second video

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer