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/

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