Tuesday, October 22, 2013

Update about updates

Still Megan posting, but dad wanted to let you all know that small updates will be posted periodically at his facebook page until he can get to a full screen computer and post these himself.

Tuesday, October 08, 2013

Caregivers Make the Worst Caregivees

First thing's first, this is not Patrick writing any of this! I asked my father for permission to update his blogs for him while he's temporarily unable to.

As regular readers are aware, he's been going through some aggressive chemotherapy for his lung cancer. After the fifth round he managed to catch pneumonia from somewhere, and had to be taken to the hospital when he was too weak to lift himself out of a chair. Something like that is scary enough for a regular person, but maybe more so for a long time caregiver. 

It was a rough couple of days, but the antibiotics finally began working and his body is still fighting off the infection now, on top of the chemo and the cancer. The main concern is that he has become very weak, and needs help doing nearly everything.

He's said since the start that parts of cancer and chemo have helped him better understand parts of my mom's disease, and I can only imagine that's even more true now. But I wouldn't want to speculate too much and end up stealing away a future post my dad would prefer to make himself!

When he'll be able to do that is up in the air. The hospital wants to discharge him to a facility equipped to handle inpatient physical therapy with the goal of returning home. And my mom's care facility happens to have such facilities! 

Now, whether or not our insurance will approve of that has yet to be seen, and whether it would even be the best fit for the kind of physical therapy he needs, I have to admit my fingers are crossed for him to spend a little vacation time there. Potentially being able to see my mom daily again could be interesting for the both of them.

I promise to read all comments to him while he's out of action, spambots included, so don't be shy.


Monday, August 26, 2013

The end of an era – accessible transportation

Facing an estimate of $1,500 in repairs to pass Pennsylvania inspection … our personal wheelchair accessible van era may end this week and it's not just the money … 

… Since beginning 'aggressive chemotherapy' almost 12 weeks ago, I can no longer lift or transfer Patti due to fatigue from chemotherapy to combat Stage 4 Lung Cancer. (My Lung Cancer Odyssey)… NO more ‘off road’ wheelchair pushing through accessible trails. … basically no more ‘physical caregiving’ on my part ... take physical caregiving out of the equation and is an 11 yr old van with 160,000 miles worth it?
Last week sitting in the chemo lounge I watched a couple use ‘the hug’ – one person unassisted transfer from recliner to wheelchair with healthy spouse transferring chemo fatigued spouse … how many times have I done that through the decades … hundreds? … thousands?  … the key word here is ‘healthy’ spouse ... and I can no longer qualify as the healthy spouse.

When operating a wheelchair accessible van one must still need to be able to lift or transfer your passenger as a failsafe. … Even my visits to Patti’s care facility have been seriously impaired by my chemo reduced immune system.

Visiting is down almost 2/3 for me … 

Does fighting to outlive Stage 4 Lung Cancer trump a quarter century priority for spouse caregiving for Multiple Sclerosis?  … Most days I awake to find myself so conflicted that I am alive and fighting to outlive lung cancer … yet ‘hands on’ involvement with Patti’s care declines.

 … her MS related dementia impairs her awareness of any of these changes … she rarely remembers I even have lung cancer much less am fighting to outlive it.

Patti did not choose Multiple Sclerosis any more than I chose Lung Cancer … however a quarter century ago I chose to juggle spouse caregiving and basically single parenting ... now we enter a yet another new era in living with MS as a Family…

A dear friend sent me a note of encouragement from the poet Audre Lorde …
“I have come to believe that caring for myself is not self-indulgent.  
Caring for myself is an act of survival.”

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Wednesday, August 14, 2013

Mammograms vs Thermograms

“Sitting in the waiting room I listened as Patti reinvented the boundaries of cursing, swearing and yelling even with her own daughter trying to help before another mammogram bit the dust ..."

FEATURE Posted by Patrick Leer - August 13th, 2013

Thank you http://multiplesclerosis.net/ for the  opportunity to share our story. 

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Saturday, August 10, 2013

Palliative Care, Hospice, and MS

"Palliative Care does not leap out as something associated with MS. 

Yet in reality ‘palliative care’ is medical care provided by physicians, nurses and social workers that specializes in the relief of the pain, symptoms, and stress of serious illness ….”

Posted by Patrick Leer—August 8th, 2013

"... Obviously there will come a point when you will need to have conversations one way or another about palliative care, hospice, and dying regardless of what your diagnosis is.

As a caregiver this might be the one surprise you are not prepared for, after all MS is not considered a fatal disease! And your spouse has mild MS or is using disease modifying drugs….  Don’t let yours become intimidated by stigmas or wait too long. Get the facts in your State.

As a caregiver you are no more guaranteed tomorrow than the MS person you care for.”
Thank you http://multiplesclerosis.net/ for the opportunity to share our story of living with MS as a family. 
Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Wednesday, August 07, 2013

Caregiving Yours ... newsworthy?

Increasingly "My Lung Cancer Odyssey" and "Caregivingly Yours" cross over ...

From “The Sentinel” Newspaper …

“MECHANICSBURG — For the past 24 years of his life, Patrick Leer’s own health concerns were of little consequence in the face of his wife’s multiple sclerosis …“


Thank you Christen Croley and “The Sentinel” for promoting awareness of Lung Cancer, Muliple Sclerosis and upcoming Pennsylvania Lung Cancer Partnership’s Free To Breathe 5K Run/Walk on City Island on August 24th.

I also blog for multiplesclerosis.net

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Saturday, August 03, 2013

“You’re cane looks stupid!”

Breezy, partly sunny and 74˚F (23.3˚C) … it was not only a perfect Multiple Sclerosis afternoon but my first chance to push Patti’s wheelchair since chemotherapy for my lung cancer began 8 weeks ago

After a couple blocks I yielded to Megan and walking next to Patti she notices my cane …

Patti: “You’re cane looks stupid!”

Patrick: “My cane looks stupid? … This from someone in a wheelchair … isn't that somewhat like the pot calling the kettle black” 

The banter of laughter is a wonderful aperitif before dinner at Helena’s Chocolate Café & Crêperie in Carlisle, PA 

Patti and Megan split a 'Nutella and Strawberry Crepe', I ‘chemo sampled’ a Breakfast Crepe featuring egg, ham and gruyère cheese 

…‘chemo sampled’ meaning I ate about half because of chemo suppressed appetite … I have learned to order foods that can easily be reheated at home as often appetite returns … or in this case I hope for ‘breakfast’ tomorrow.

Washed down by Nantucket Nectars Lemonade, we finished by splitting a fruit (blueberry, raspberry, and kiwi) tort. 

Admittedly the assistive devices seem to be multiplying and since chemo Megan has taken over the assisted feeding of Patti ... 

We have been living with Multiple Sclerosis as a family for 24 years … since chemo we push, roll, and now limp forward ... making the time for the banter of playful laughter ... We Are Family!!!
Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Saturday, July 27, 2013

slap that tech

(Sometimes Caregiving Yours intertwines with My Lung Cancer Odyssey)

Meeting with my oncologist to discuss my CT Scan of neck, chest, abdomen and pelvis …

... in ‘lay speak’ … after 6 weeks of chemotherapy two of the three tumors in right lung have shrunk and one has not grown … !!!!!!!!!

… hugging and/or hi-fiving anyone and everyone … it was time to pick up Patti for her annual mammogram …

‘family assistance’ was requested because Patti can be a most uncooperative patient, last year even slapping the tech ending the unsuccessful session.

Not much different this year except no one got hit …. Patti simply reinvented boundaries of cursing, swearing and yelling even with her own daughter trying to help before another mammogram bit the dust … 

A little time with the ducks, Papa John’s Pizza and Misto Shakes from Rita’s was next on the list  …

Picture collage captures me “preparing” in waiting lounge for my meeting over lung cancer scan and our post unsuccessful mammogram picnic in the park.

“We я Scans”
Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Thursday, July 25, 2013

VOWS “What do words got to do with it?”

“…Saturday was Patti and my 28th wedding anniversary … while certainly considering all that has happened living with Multiple Sclerosis as a family and since Dec 2011 my lung cancer diagnosis … yeah it is a long time … but each year we hear all these platitudes about ‘a guy who keeps his vows’ … bottom line WE have no vows between us nor ever have …”

Perhaps in the expanded writing format of MultipleSclerosis.net ... a little back story can elucidate 
Posted by Patrick Leer—July 25th, 2013

“The measure of a man lies not in what he says but what he does” 
Grant Morrison’s “Superman”

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Monday, July 22, 2013

Plan Now For Changing Care Needs

Wow! There is nothing like a lung cancer DX to erase whatever I was doing  ...

I had just written an article for MSFocus magazine on ironically 'plan now for changing care needs' when lung cancer entered my world in Dec 2011 and I forgot to even share the article from their Winter 2012 issue ... that is until I was recently cleaning up. 

"...More importantly, the plus is that Patti is secure, safe, nearby, and has 24/7 care the rest of her life. Some days, I have to keep reminding myself of that positive outcome. And when you add it up. it is an extraordinary safety net."
Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Wednesday, July 17, 2013

MS independence takes support

“Noticing I’m wearing an old MS Walk shirt that exclaims “Every hour SOMEONE LEARNS they have MS!”… OK so how often does someone learn they are a MS caregiver?

We are never really diagnosed … to paraphrase Shakespeare from ‘Twelfth Night’ … “Some are born MS Caregivers, some achieve MS Caregiver and others have MS Caregiving thrust upon them.”

For MultipleSclerosis.net …
Posted by Patrick Leer—July 17th, 2013

"Living with MS as a family and dependence can be a contradiction in care. With MS symptom progression, my role as caregiver became increasingly necessary because bottom line … ‘Independence’ takes support.”

“It's my job as MS caregiver to help every family member remain as independent as possible (and oh yeah, kind of like Santa please don’t let anyone see you do it).” 

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/
My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/  

Sunday, July 14, 2013

the straw that stirs the drink

Living with Multiple Sclerosis as a family I used to feel was a parallel universe … and frankly it still is but when changes in other family members occur it becomes more like a benevolent maelstrom … swirling together Patti’s MS, my lung cancer DX, and the death of Patti’s father.

Through Patti’s eyes (MS dementia and cognitive impairments) I have no lung cancer, her Dad’s in heaven and an afternoon of family fun is just that … fun and laughter. She is practically the straw that stirs the drink.

Empowered by our daughter boldly facing the unimaginable herself … listening to their banter driving … I sit in awe.

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Thursday, July 11, 2013



... Time with Patti has been a constant frustration through this past month of chemo … down from at least 3 outings/visits a week we have been lucky to have one … ‘focusing on my cancer’ the absence of caregiving time gets in my head like negative energy.

Our daughter has been a godsend somehow creating opportunity between everything else going on … we had a fun afternoon Wednesday snacking on popcorn and popsicles in front of TV and catching some sun on the back patio … all the time with ‘no lung cancer’ since Patti’s MS dementia and cognitive problems prevent her from remembering.
Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Tuesday, June 25, 2013

death dying and MS dementia

A niece of Patti’s notified me Saturday that Patti’s father (Harold Decker) had died earlier Saturday. Speaking for, to, or whatever for dementia was never a role I wanted.

Yet the die was cast and frankly I do have the most experience.

Humbled by two weeks of Chemo Fatigue and on guard from others getting inside my failing immune system, our daughter and I concocted a plan.

We arranged with care facility to set up a sleeping pill for the evening, just in case. Then after completing my saline drip or the day we returned home for phase II

Feeding Patti a comfort food dinner, I began with, “Patti your father died” … “what!!! Harold Decker is dead?”

Shifting to logistics … “My Dad is in heaven … why would he give a shit?”

Letting Patti run with the agenda we zoomed in and out of ‘remembering’

I don’t know what Patti will or will not remember but I pray it is memories of life and laughter from long ago …
... and by our daughter to keep her Mom connected and engaged through My Lung Cancer Odyssey she has empowered father daughter time including this now iconic photo of Harold and, Patti in front of grave of George Decker from Memorial Day Weekend at New Freedom Cemetery.
Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Thursday, June 13, 2013

Unicorn Trapped In A Cage

MultipleSclerosis.net brings such inovation and dialogue to the MS community, sometimes I feel like a tribal elder.

And if this tribal elder can toss in his two bits you learn to find and remember to treasure the fun moments living with Multiple Sclerosis as family, because Patti inside the MS is still there even a quarter century later – A unicorn trapped in a cage.

Posted by Patrick Leer—June 13th, 2013

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Monday, June 10, 2013

miscarriage and Multiple Sclerosis

Somewhere I Recently saw an article or discussion that there is ‘no evidence’ of MS having a higher rate of miscarriage.

Yet, Patti miscarriaged twice between 1985 and 1990. Frankly that is more than ‘evidence’ in our story of living with MS as a family.

First was in first trimester, the second following an amniocentesis procedure … essentially bookending the successful birth of our one daughter in 1988.

Back in those days, there was even some neuro mumbo jumbo  that pregnancy may help and/or slow MS progression.

Patti’s second miscarriage resulted from our failing belief in ourselves.  MS erodes more than the physical.

A week following an amniocentesis procedure, the fetus was found dead on ultrasound. Patti underwent her second surgery for dilation and curettage (D&C Procedure), both miscarriaged fetuses were female.

In those days, miscarriage was considered a rare risk yet it happened. Did MS increase the risk?  … In a handful of months Patti would be hospitalized for her first major MS exacerbation. Was this linked?

Back in ’88 the New York Times published “Study Finds 31% Rate of Miscarriage”. I did not even have to take my shoes off to calculate Patti’s rate was 66%. Why double the norm? MS?

Lacking a National Health Service we build a health system not on numbers or facts but on shared conjecture.

Except that a miscarriage is never a statistic, it is the death of a dream. How do you bury a dream? How to you mourn a dream? How do you not abhor Multiple Sclerosis, this murderer of dreams?

When I have paused through the quarter century of juggling MS Spouse Caregiving and basically single parenting our daughter and pondered if three daughters would have been harder or easier … I just hate Multiple Sclerosis more.
Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Friday, June 07, 2013

MS is about playing Russian roulette every morning

“In our first 10 years of living with MS as a family, Patti would refer to waking up with MS as if waking up and playing Russian roulette every morning. She would lay there with her eyes closed taking an inventory of what worked and didn’t work today…”

Posted by Patrick Leer—June 5th, 2013

When I wrote this for the folks at pioneering MultipleSclerosis.net, I shared that from my experiences as a MS spouse caregiver and family we must be equally passionate. We need to wake each day to a ‘pragmatic check list’ of how can we make the day better for our spouse and our family.

Shortly after writing this my world collapsed into an earthquake as my cancer staging soared from Stage 1 to Stage 3 to Stage 4 with brain metastasis. ... whoompa whoompa headaches = metastasis

I know it sounds nuts but through these recent weeks of brain radiation treatment to arrest and/or reverse brain metastasis making sure outings with Patti are part of each week have been stabilizing for me and frankly fun because in Patti’s smiling MS dementia I have no lung cancer. 
--Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Wednesday, June 05, 2013

Multiple Sclerosis home improvements for accessiblity

Sitting down to write an article for MultipleSclerosis.net with all its modern cyber features and connections, I can never forget the pre-Internet dawn when I discovered I was not alone!

Less I digress, God bless technology but MS caregiving is, was, and always will be about ‘hands on’. Social Media will never pick anyone off the floor and that IMHO is the ghost in the machine.

As the spouse or family member without MS you must be the balance between supporting a hope driven life with MS and pragmatically anticipating and preparing for change.

by Patrick Leer—June 3rd, 2013

A little back story not in the article … We bought our original home in College Park, MD. Built in 1904 and restored in 1968 it began life as a farm house surrounded by farm land in the early 20th Century.

The sellers seemed  almost a mirror image … yet while we shopped the asking price plummeted. … the Dad had come down with a "disabling pulmonary condition" from his asphalt business and shackled with the 20%+ mortgage rates of the Carter era they were bleeding out and overwhelmed by the advent of disabling disease into their family of three.

Patti, then a buyer for Stanford Paper, pounced and fueled with the 8% mortgage of the Regan era ‘signed sealed and delivered’ our first home.. 

…Within just a couple years a DX of Multiple Sclerosis entered our lives increasingly making our home unsafe for Patti. I was surprised to find this old picture of Patti ‘standing’ in front of the house on the brick steps.

Patti’s refusal to ever let the house appear to have an accessible entrance unquestionably complicated adapting. Excuse me patting myself on the back but I built a 400 ft long boardwalk from our driveway wrapping around the house and ending in what appears to be an oversized deck, yet is basically a 'disguised from street view' wheelchair accessibility ramp ... soon our daughter and her friends were skateboarding, roller blading and bicycling along with Patti's scooter from door to street.
As these clips from real estate flyer demonstrate our house became accessibility marketable over the time we lived there. Bought by a landlord investor he quickly sub-divided it  into three 'accessible apartments.'

Never underestimate the role of extended family. Patti was, is, and will always be Harold Decker’s 'little girl' and when Dad is a tile contractor well each visit brought the loving touch of power tools to keep pace with physical progression.
Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Sunday, June 02, 2013

not just your everyday Saturday afternoon

"Pack Up Your Troubles in Your Old Kit-Bag, and Smile, Smile, Smile"

Saturday was not a MS friendly afternoon with temps sweltering at 94°F (34.4°C) and we had been invited to a graduation party by Patti’s niece and her boyfriend’s family.

First let me give a shout out to the Heckendorn family, your accessible home and hospitality ‘in our world’ was so much more than appreciated.

Uhthoff's Phenomenon seemed suspended as Patti was unaffected for almost 3 hours outdoors. Yes, her NMSS keck cooler helped plus the fan someone positioned near our table blowing gently across Patti  … frankly sometimes I gawked in disbelief.

Over the years these rare brief suspension of MS symptoms always create a MS time travel moment. Nothing changes Patti’s physical dependence but an ‘ascendant’ Patti engaged and enjoyed the party.

Even when feeding her I noticed MS dysphagia symptoms were asleep and not affecting chewing or swallowing.

When ‘MS speech’ finally broke through jumping into a pause in her brother’s toast … it was a sweet remark to make.

Personally finding a bowl of  'atomic fireballs' on the desert table was the pièce de résistance. 

Sometimes when lung cancer pushes multiple sclerosis up a hill, there is a smile waiting at the top.
Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Thursday, May 30, 2013

hidden symptoms of MS

MSAA (Multiple Sclerosis Association of America) has IMHO an excellent article in their Winter/Spring 2013 "The Motivator

Managing the symptoms that those around 
you may not easily see or understand

Along with stories on Pain with MS, Coping With Fatigue, Sleep Issues, Cognitive Changes and Visual Problems. MSAA Winter/Spring 2013 is one of the best I’ve read

In our story, hidden or ‘invisible’ symptoms were not really a factor except to isolate from the beginning any kind of support groups for Patti because others with MS were about as different as those without MS.

I appears if you do not receive their twice annual magazine then you can download a PDF version from the MSAA 'Motivator' web site.

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Wednesday, May 29, 2013

World MS Day is ALSO about MS caregivers, families, and friends

The fear of being left all alone with a disabling illness such as Multiple Sclerosis to cope in a hard and scary world I imagine is more than universal.

Then on the other side is debate over sacrificing your own life as a caregiver. Some argue morality is a code of life not death. Your first moral duty is to take care of yourself.

Believe me after a quarter century no one gets both. IMHO it has nothing to do with philosophy or fears; there really is no right or wrong answer. … It’s about what you are made of. The person diagnosed with MS has no choice. Caregiver, friends, and family on the other hand is all about choice.

Today is World MS Day 2013TWO million people around the world are living with Multiple Sclerosis. Add in their caregivers, families, and friends = mind boggling numbers.

Christ’s cry from the cross, "My God, My God, why have You forsaken Me?" has kept men and women of faith busy for centuries. … While those of us with feet of clay simply try to live with chronic illnesses like Multiple Sclerosis as family and create the best of possible lives.

Some will walk away, some will drift inside themselves and some may actually make things worse by staying with their negativity. I cannot fault any person when medical science itself has left MS in the dust of the laboratory floor.

I’m no believer in deep thinking over intuition, vows, promises or whatever. To my knowledge Patti's first huband has never even cared and hell's bells those two were in love. Marrying before God and man to all the right vows, love and all the bells and whistles only to have domestic violence end their marriage. Evil does not always masquearde as a disease.

We have no vows nor promises between us only a belief in the words of the Prophet "Give your hearts, but not into each other's keeping. For only the hand of Life can contain your hearts. Stand together, yet not too near together: For the pillars of the temple stand apart, and the oak tree and the cypress grow not in each other's shadow.”

I honestly believe it comes down to caring. MS caregiving will become physical care with lifting transferring and more. Do I have true grit?

As always my thanks to MultipleSclerosis.net …
by Patrick Leer—May 27th, 2013

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

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