luminaries, a lake and Multiple Sclerosis

As if a push and roll outing around a lake surrounded by 400 luminaries and a lighted floating Christmas Tree was not enough … 

“With the economy the way it is, and how things are going in the world today, we wanted to give back to our community.” … “Everything is free”

Christmas by the Lake at Children’s Lake in Boiling Springs, PA felt like falling into a Currier & Ives lithograph when members of a ‘town band’ arrived to play holiday music and a high school choir to sing Christmas carols. … all that was needed was snow!

Of course in our story everything revolves around Multiple Sclerosis.

MS related dysphagia restricts even a free menu of hot chocolate, coffee, hot dogs, homemade cookies, pumpkin bread and chestnuts roasted on an open fire. However with some teamwork and verbal cues we were able to enjoy hot chocolate and homemade cookies. I suspect I enjoyed the roasted chestnuts more than Patti. Ohhh how I once loved bags of roasted chestnuts on the streets of NY.

You may notice the mittens pictured on Patti. Chronic fidgeting has been, and is, one of the more frustrating of her MS cognitive symptoms. This long ago torpedoed the catheter era and continues to confound transporting her when she repeatedly disconnects her seat belt while I am driving and need to stop to reconnect.

Wearing her mittens usually keeps her from manipulating most objects and endlessly putting the mittens on and off it seems to satisfy her fidgeting.

Though having mittens on this balmy sunset, 48°F (8.9°C), was fortuitous as they were ideal for holding the hot chestnuts until they cooled enough to eat and for holding the pictured luminary for a creative photo op.

Accessibility in general can be a challenge especially after dark. Fortunately any time a town closes streets to traffic for a community event it exponentially increases its accessibility rating.

Did I mention “free” horse drawn carriage rides? Probably not, MS fatigue eventually trumps all … sooner than later all Patti really wanted to do was go to sleep. 

Patrick Leer

BLOGS:

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

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

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Health Activist Contests

To shill or not to shill, that is the question …

 “…someone in your community has taken the time to draw attention to your efforts during 2012 and wants to make sure you are recognized.     You have been nominated for the Advocating for Another Award in this year's WEGO Health Activist Awards!...”

Personally, I would bet a dollar that everyone who has a screen name received a similar notice. 

I always worry that such hoopla about who is best could deter that new caregiver or person in need from sitting down and sharing. In my opinion the blogosphere is not about ‘mavens’, self-appointed experts, ‘gurus’, or ‘gated communities’ but about people sharing their stories openly which in turn can be searched by others.

Admittedly I am just an old dude and I remember that near magical moment when someone like me, a Multiple Sclerosis spouse caregiver, appeared in a note in something called a Prodigy newsgroup bulletin board back in the primal goo of the genesis of something called the Internet. … OMG! I was not alone. It was empowering and neither of us cared who was 'better'. 

However let me also say - more power to the youngens with WEGO. Creating jobs for themselves in this economy is worth praise in itself!  … And don’t get me wrong, if their contest can connect a participating health blogger with a winning swag bag of free meds from Big Pharma and some cash – shout it loud! I will even give you an Amen! Incentives of travel to conferences, etc - well that's appealing to the young, beautiful and healthier but may not work for long term caregivers nor those with severe physical or cognitive challenges. 

So for me, at least in the moment, I will take the Shermanesque dodge here and say “I will not accept if nominated and will not serve if elected” J

I am just an old dude tryin' to make a livin' and doin' the best I can. Pushing Patti's wheelchair after 23 years of spouse caregiving apparently just was not enough … so this year we tossed in my own lung cancer odyssey.

Activism? Isn't that just another word for the wheelchair tread marks and footprints we leave behind.  

Patrick Leer

BLOGS:

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

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

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If it ain’t broke don’t fix it

While this phrase has certainly evolved into a down home cliché about sufficiency I personally have found that it does not translate well into advocacy in the care facility era.

Joint contractures are a good example of this challenge. Contractures are a preventable source of excessive disability but this is Multiple Sclerosis and muscles act weird, dysfunction begats dysfunction. Believe me not everyone, including myself, is on the same page for a boatload of reasons.  

Sometimes advocating is about trying to prevent things from worsening.

Sooooo it ‘ain’t been broke’ in so long I got curious and dropping by early to pick Patti up I found her in physical therapy room, strangely laughing while doing her assisted knee contracture exercise instead of cursing and swearing her traditional therapy language. Therapist shared her ‘numbers’ reflecting Patti’s improvement as I shared my anecdotal evidence that I could not even remember the last time she did not extend her legs when I transferred her.

In talking we discovered my own health issues had apparently played a beneficial though unintentional role. Just before my lung cancer surgery the time of day for Patti to wear her braces was changed to early evening. Laying in bed Patti was unable to tinker with braces making then ineffective as pictured to the left. So evening LPN’s began applying braces around 7 PM and removing each night at 11 PM when overnight shift arrived. Unencumbered overnight sleep was as important as the 'low-load, long duration stretch'.

Prior to my lung cancer surgery I would often return Patti later than earlier and was working on my average of 3-4 outings per week. The problem was that by doing so I was short changing the duration of ‘low-load, long-duration stretch’. When our daughter stepped in during my recovery from surgery to pick Patti up and bring her home for visits she improved two critical things. She reduced the outing equation to 3 and since she does not physically transfer Patti herself learned from staff that they usually transfer Patti to bed after dinner approximately 6:30 PM. A timetable which not only is MS fatigue friendly and Patti prefers but enabled a regular nightly schedule of 4 hrs of low-load, long duration stretch.  

Sometimes advocating is also about learning better ways to accomplish the same thing.

previous related entry: contractures Multiple Sclerosis

Patrick Leer

BLOGS:

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

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

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sometimes you have to turn it up to '11'

On a sunny 70°F (20.9°C) afternoon in December in South Central Pennsylvania I picked up Patti from her care facility for an outing, rolled down the windows and cranked up the radio to '11'. (As Nigel Tufnel taught us all in ‘This Is Spinal Tap’, sometimes 10 just won’t do.)

With Spring Fever in December we headed off in search of the legendary Red Devil. First stop, Dickinson Field alleged home of the Red Devils or at least that is what it says on a sign.

After a most enjoyable but futile push and roll Patti was laughingly remarking something to the effect “the damn little bastards probably can’t read and don’t know they are supposed to be here” when …. poof she was gone.

Being a super sleuth I followed her wheelchair tracks to the baseball dugout where I found her encaged in laughter and after all it certainly was baseball weather.

If not here then a graveyard was the next logical place to search for that Red Devil. I could not find either adjacent parking or an accessible way in - well, except for the hearse entrance. Hey, it was an ‘eleven’ day so in I drove, parked and deployed the ramp on what appeared to be unused ground.

Consulting first with the sculpture I have often admired driving by Patti decided she looked like a stone cold creepy thing and well, we got no more information from her.

Next we headed deeper into the oldest section where graves date into the 1700’s and the drooping branches of ancient evergreens trump Hollywood. Old grave markers were often as much about wit as dates and soon we were laughing along with 250+ yr old witticisms. … but no closer to finding the Red Devil though totally enjoying our outing.

Returning to the van I remarked to Patti “those look like muddy footprints going up the ramp! …”

“… and those annoying two were never heard from again.”

The End,

The Red Devil

BLOGS:

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

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

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first snow push and roll

Maybe it’s the combination of reading other Multiple Sclerosis related blogs and the dawn of the 23^rd year of our own story of living with MS but my heart goes out.

Maybe Guns N’ Roses was right, “... Nothin' lasts forever … and it's hard to hold a candle in the cold November rain …”

Others all seem like such youngens either chronologically or in terms of MS progression. I pray they all can stay forever young, stay forever mild. It sure doesn’t get any easier.

Whatever, as long as I can still push a wheelchair and the first snow falls it was time to get Patti out for a push and roll through the park adjacent to her care facility.

MS dementia symptoms are such cunning thieves. Patti enjoys the ‘now’ of the push and roll but she quickly forgets as she remembers her longer ago pre-MS times skiing.

Then it was home for dinner and back to my ongoing project to extend Patti’s self-feeding for as long as possible. Thanksgiving and Thanksgiving left overs are not exactly dysphagia friendly food and require me or someone to feed Patti along with verbal cues.

On the other with the flick of a switch our gas fireplace leaps to life as I hand Patti a bowl she can self-feed with cut up MorningStar Farms vegetarian buffalo wings, cut up mango spears, and grapes to enjoy in front of a fire after a push and roll through the season’s first snow. 

One way or another we all live 'in the now', some of us just remember it. 

Patrick Leer

BLOGS:

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

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

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What is your caregiving 'prime directive'?

Any Trekkies out there? Any ‘normals’ remember the Prime Directive, Starfleet’s General Order #1? (Trivia answer at the end)

The point here is that as spousal and/or family caregivers we each have our own Prime Directive ... and as National Caregivers Month 2012 comes to a close, why not share?

Mine has always been, is and I suspect always will be Patti’s ‘safety’.

Our story began so dramatically with Patti awakening on Thanksgiving morning 1989 suddenly unable to walk and barely about to see and talk with her first major Multiple Sclerosis exacerbation that I was baptized by fire into the world of caregiving and medical advocacy … while somehow juggling our 18 month old daughter in my arms.

Yes, Thanksgiving Day is a “tradition” for others but for me it’s become more like a minefield of challenges to my prime directive of Patti’s safety.

• ·      MS related dysphagia smothered in abundant food demands 200% of my attention, feeding Patti, monitoring, and verbal cueing to prevent choking while the discordant symphony of a large family dinner plays on.
• ·      Transferring and travel is always like spitting into the wind, do it on Thanksgiving Day and well you just up the ante. Should something go wrong able bodied people can just walk away, this is not an option for a non-ambulatory woman in a wheelchair inside a wheelchair accessible van requiring a ramp to exit and enter.
• ·      While guests use a restroom for us it’s more like a mutated Turkey Day “beat the clock” game. From the time I pick her up until we return it’s a gamble on incontinence. Patti’s only option would be me physically transferring her to and from a bed and changing her.

Bottom line – did Patti enjoy the time? ‘In the now’, yes!

Though MS related dementia erases each holiday moment as it happens, more like an etch-a-sketch Thanksgiving. Driving away when Patti cannot tell me what we just did, it does make me wonder about the equation of risk vs reward.

And for the first time in 23 years facing my own health issues, a lung cancer diagnosis, I realize I may not be able to be the linchpin in future caregiving equations and wondering what is more important traditions or prime directives?

Patrick Leer

BLOGS:

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

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

P.S. As promised for trivia buffs -  the Prime Directive dictates that there can be no interference with the internal development of alien civilizations. … Ooops, those original Pilgrims must have missed the memo from Starfleet. 

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Kiss Off M.S. 80's style

A friend sent me an old picture over the weekend which considering the whole significance of this Thanksgiving week … well, it’s kind of hard to look away … a whole lot of irony, what ifs and more.

Time traveling to the early mid 1980’s; pictured here we were participating in a “Kiss Off M.S.” promotion, a bar room version of the kissing booth. $5 donation to Multiple Sclerosis got you a kiss.

I’m quite sure I had no clue as to what M.S. was about. However standing behind a bar while women paid $5 to kiss me … come on now what’s not to like about a night like that.

Though we were dating, Patti and I would not be married for a couple years and likewise I doubt if Patti had ever heard of MS.

I find myself pausing to reflect on my coworkers flanking me for they would go on to live ‘normal’ lives. Yet today they both ‘rest in peace’ while I may be the only one left standing to hit this send button ... so I better not dawdle. 

Patrick Leer

BLOGS:

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

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

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ill spouse vs well spouse

Any time I ever try to explain this concept to Patti I find myself slipping into some mutation of “I is the IS and you is the WS as you are me and we are all together … I am the walrus, goo goo g'joob.” We just end up laughing and by then her Multiple Sclerosis dementia related symptoms have erased the conversation and we can simply start over again … or not.

Among the technologically too cool of modern social media, IS = ill spouse and WS = well spouse. Obviously we are out of sync perhaps that is because our story began in the last Century.

Thanksgiving morning will mark the beginning of my 23^rd year as my wife’s spouse caregiver.

Caregiving was consequential when it began for me.  Former First Lady Rosalynn Carter was about the only person making noise. And frankly some stigmas were making my life harder. Multiple Sclerosis was, and is, portrayed as mild. Anyone successfully juggling both caregiving for a spouse and basically single parenting had to be a woman.

Oh yeah and this thing you are using to read this was not around. We went to our neighborhood library for information.

I can still remember the first time years later that I discovered someone like me out there in this mysterious place called the Internet.

Today when I cruise by ‘on line’ support groups or pages they seem so adversarial to me, more about WS vs IS.

It’s OK to not like caregiving moments, Lord knows I get that.  Maybe it’s about too much access too soon. I know for me if I pause to take a deep breath then what I have to say comes out different.

Bottom line it’s always been about choice. Patti did not choose to be severely disabled with MS. I chose to give care.

If advice from an old dude is even germane anymore … as insane as caregiving moments have driven me over the decades, I have always tried to remember it is the MS I hate not the IS.

Patrick Leer

BLOGS:

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

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

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Not Your Friend’s MS Caregiving

Reading the latest issue of NMSS Momentum I was intrigued by their cover article “Not Your Friend’s MS”.

I found myself reflecting on how many Multiple Sclerosis spouse caregivers, family and or friends who actually provide care or one day may need to provide care are not affected similarly by the phenomena of “Not Your Friend’s MS Caregiving”?

Reflecting led to reminiscing …

Rosalynn Carter

Decades ago my Dad gave me a copy of “Helping Yourself Help Others” by former First Lady, Rosalynn Carter who first became a caregiver as a teenager helping her Mom as her Dad died of leukemia. I will always remember reading for the first time, "There are only four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers". … Decades later Rosalynn Carter remains involved as President of Board of Directors of the Rosalynn Carter Institute for Caregiving of Georgia Southwestern State University.

Mitchell Kowalski and Zane Kotker 

Around the same time, misfiled on a library shelf I found a copy of “Mainstay: for the Well Spouse of the Chronically Ill” written in hindsight by a MS spouse caregiver, Zane Kotker under the nom de plume, Maggie Strong. Most importantly to me at the time, she wrote about caregiving for severe and progressing MS until her husband’s death … ‘not your friend’s (mild) MS’ as portrayed everywhere else in MS publications of the time. Today Zane Kotker continues her writing career but as a fiction author under her own name living in the Pioneer Valley of Massachusetts. That original 80’s book “Mainstay” spawned what today is known as the Well Spouse Association.  

These two long ago, pre Internet advocates for caregivers back when I was starting are good examples of the range of philosophy of “not your friend’s caregiver”.

Neither is right or wrong! Yet in the beginning, who among us does not search for or want to be inspired by the ‘right plan’ for the future. That is until unpredictable twists and turns of fate leave us all … living the ‘best of possible’ lives.

Patrick Leer

BLOGS:

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

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

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November is awareness

Awareness sometimes is just reality biting you in the ass.

My Dad became my Mom’s caregiver spouse in 1987 when she suffered a massive stroke in ICU following carotid artery surgery. … I became Patti’s spouse caregiver when she awoke Thanksgiving morning 1989 unable to walk and barely able to see or talk and by afternoon was hospitalized with her first major Multiple Sclerosis exacerbation.

Thanksgiving was about ‘caregiver awareness’ for us before it was ever designated. In 1994, the National Family Caregivers Association began promoting the week of Thanksgiving to acknowledge family caregivers. Eventually the entire month of November would become National Family Caregiver’s Month. 

November is also designated Pancreatic Cancer Awareness Month. My Dad died of Pancreatic Cancer 15 years ago. I spent the longest night of my life holding him, talking with him and sharing “the time of angels” ... I have been there for the closing chapter of cancer. That’s the kind of awareness that just does not pigeonhole into a month.

My own lung cancer odyssey began with a 9 mm vague nodular density on a chest x-ray 10 months and 2 weeks ago. This will be my First Lung Cancer Awareness Month as someone surviving lung cancer. To me every day is Lung Cancer Awareness Day not just November.

It’s difficult not to notice the common denominators of long term spouse caregiving and cancer. Cause and effect? I seriously doubt it but then I’m left to pause and wonder if ‘the deadliest cancers я us’ isn’t becoming some macabre family tradition. More likely, spouse caregiving equals long term stress which does take a huge toll on the immune system.

To paraphrase Shakespeare from the Twelfth Night, ‘Be not afraid of awareness, some are born aware, some achieve awareness, and some have awareness thrust upon them.’

Patrick Leer

BLOGS:

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

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

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fun with accessible voting

Voting with us is not unlike the delicatessen scene from the movie “When Harry Met Sally” after Meg Ryan demonstrates a fake orgasm and the older woman customer remarks to the waiter “I’ll have what she’s having.”

Other voters look up from their computerized voting screen toward ours wondering why theirs is not so entertaining.

That’s because they are not assisting a voter with severe Multiple Sclerosis with symptoms including legally blind and severe short term memory loss at the top of her myriad of cognitive challenges.

Having just finished reviewing Presidential choices including third party candidates, I turn to Patti and quietly ask her who she would like to vote for. … In a booming voice one might normally reserve for yelling from the top of a football stadium (because MS frequently lacks volume control) Patti declares “I think they are all assholes!” … and dissolves into self-bemused laughter.

The guy next to us laughingly remarks to a poll worker “How come my machine doesn’t have that choice?”

Eventually and while having more fun than two people should in a polling station we do finish voting.

Yes we, or I should say I could cop out for us, and do a mail in ballot or any of the other accessibility options but Patti prefers to participate in voting at local polling places. Accessibility to us has always meant inclusion not exclusion. … and if it can be enjoyable along the way than all the better.

Patrick Leer

BLOGS:

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

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

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