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