chemotherapy

From MY LUNG CANCER ODYSSEY ...

... 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/

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

hidden symptoms of MS

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

The Hidden Symptoms of MS

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/

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

Paperwork of Living With Multiple Sclerosis-The Proverbial Weakest Link

In our US healthcare system, medical insurance makes or breaks way too much. As the health care reform at least rolls out the affordable care act is an enigma to most and to anyone impaired or ill there are potential catastrophic choices looming in options.

When we the people in the mid 1980’s through everything from federal legislation to divestment of stocks by colleges, towns, organizations and more of businesses supporting South Africa we the people were credited as pressuring the South African Government to embark on negotiations ultimately leading to the dismantling of the apartheid system .. no drones, no troops intervening. We the people simply did the right thing.

Now days it is not any particular  insurance company, nor any worker, nor any death squads – misery and death by insurance cancellation is all about your neighbors, friends, family and even the face in the mirror. 

IRA portfolios that include health insurance stocks are all about ‘your demand’ for profit. Profit from health insurance does not require me to explain the math.

Living with a chronic disease like MS is a hugemongous expensive. Too often like trying to dance through a mind field. Hope drives, neuros encourage, Big Pharm promises but with the dawn of MS cognitive impairment and you start to miss dotting some i’s and crossing some t’s you open the door to the profiteers.

Bean counters are not the bad guys, nor is the representative on the phone they are just doing their job. It’s you who demand the profit. Take a look in your IRA, your neighbors’s IRA, or your family and friends. Find health care companies or medical insurance company stock and you will find the enemy.

Of course this is 2013 and it’s all about money not what’s right. Yet divestment in portfolios including health insurance, health care, Big Phama, etc could have the same powerful impact on change to what is right! Profit exploits, profit has no conscience, profit, not people, cancels insurance. Look in the mirror.

As always I am thankful to MultipleSclerosis.net for inviting me to share the longer versions of our story and while our story is specific to MS, sooo many families face similar nightmares caring for special needs children, aging adults and more. 

“Paperwork of Living With Multiple Sclerosis-The Proverbial Weakest Link” Posted by Patrick Leer—May 15th, 2013

Patrick Leer

Health Activist:

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

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

what if? ... Multiple Sclerosis care facility era

Multiple Sclerosis affects each person so differently, I honestly do hesitate to share our story sometimes.

WHAT IF…THE CARE FACILITY ERA

By Patrick Leer for MultipleSclerosis.net

Scaring or depressing the newly diagnosed or those with mild MS is not my intent but on the other hand living with severe MS as a family can no longer be brushed under the rug.

My wife's quarter century imprisoned in her malfunctioning body by MS has meaning, as does her wish 'what if' something happened to me? Patti never ever ever ever wanted our daughter to sacrifice her young life as her caregiver 

I wonder if sometimes the fear of tomorrow is not more about concerns over family support and involvement as much as MS symptom progression. 

"How did you know when it was time for Patti to move to a care facility?" My thanks to MultipleSclerosis.net for sharing our longer stories.

Patrick Leer

Health Activist:

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

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

care facility multiple sclerosis caregiving

an outing with Magoo

After her flu related attended bed rest for the better part of 5 days it was time to pick up Patti from her care facility for a push and roll through the fresh air especially on a sunny 53°F (11.7°C) Saturday afternoon in January.

Push and rolls accompanied with Multiple Sclerosis dementia are never boring. Encountering this statue Patti wanted to know “why  the f#ck was this guy holding a pen?”

Seeing no one anywhere nearby necessitating parental guidance controls on language, I plunged in. Reading the print I explained to Patti “it was a statue of Benjamin Rush, a signer of the Declaration of Independence.”

Patti: “So what! Lots of people signed that f#cking thing. Most of them were forced to!”

Me: “Wow! Perhaps you should teach history here”

Patti: “I couldn’t teach history – I’m too honest. I tell it like it is!”

Laughing out loud I begin to wonder who has the touch of dementia.

Continuing our push and roll I must confess to a guilty pleasure of enjoying Patti conversing with talking cross walk polls. It’s like going for an outing with Mr. Magoo. Patti wants more than a ‘wait’ or ‘walk’ … she wants to know “why”.  While on the other hand, whoever programs them “for the visually impaired” seems to think that people with disabilities simply lockstep obey commands. 

Whatever … sunshine, fresh air and laughter is free, disease modifying medicine for whatever ails you and IMHO probably better than half the stuff Big Pharma overcharges you for.

Patrick Leer

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

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

care facility multiple sclerosis caregiving

Multiple Sclerosis and Dementia

A cortical variant of Multiple Sclerosis characterized by progressive dementia may be more prevalent than previously suspected and may be an important factor in nursing home admissions in this group of patients, or at least a Texas A&M University study back in 2005 concluded.

As one family living with MS for 23 years, “we don’t need no stinkin' studies.”

When I ‘just happened’ to return home shortly after leaving to find flames coming from the kitchen stove about 15 years ago while Patti sat oblivious at the kitchen table eating lunch – I needed no tests, scans, or neurologists … MS cognitive symptoms no matter how mild they are labeled by a neurologist are dangerous to a family’s health.

After 23 years, I better than anyone understand the fine line between hope and denial that is the life thread of living with Multiple Sclerosis as a family.  Who wouldn’t clutch at ‘MS brain fog’ instead of ‘MS dementia’? Except that one can kill you and those around you.

Reading a news story two mornings after Christmas about a local man who was found dead less than a football field from his home I could not help but remember the pivotal moment when home care ended for us.

In the tragic news the man was in the early stages of Alzheimer's disease and "unfortunately the weather conditions — the rain, the snow and the wind — were just factors that were against him."

In our story, eight winters ago … an artic chill throughout the house awoke me. Sitting in our wide open front door were our three cats staring at Patti outside in sub 0˚F (sub -17˚C) weather in her wheelchair dressed in just a nightgown. Her wheelchair had crashed to a halt in a bank of shoveled snow where our sidewalk turns. I have no idea how long she had been out there and when asked she responded something to the effect she needed to walk the cats. ???

Just suppose I had not returned home when I did, suppose the wind had blown the door shut?

Dementia is a scary word and we seem to go out of our way to invent diagnostic euphemisms.

I pray families can find the balance between hope and the safety of those they care about. 

Patrick Leer

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

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

care facility multiple sclerosis caregiving

Multiple Sclerosis Caregivers 2012

Last Fall MS caregivers throughout the US, including myself and readers of Caregivingly Yours, participated in a research study about Multiple Sclerosis caregiving.

The results of that study were published last month in a 62 page report available on line in PDF format at:

Multiple Sclerosis Caregivers March 2012

Conducted by National Alliance for Caregiving, National Multiple Sclerosis Society, Southeastern Institute of Research and supported by Sanofi US.

Block out some time, get yourself a cup of coffee (or favorite beverage) and discover statistically who we are, what we do and how we each stand in the new idea of normal. 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer 

We are … what we remember

Caregiving and Multiple Sclerosis can bump into semantic walls. Short term memory loss, cog fog, or dementia may be just words to some, but to others - them’s fightin’ words.

Yet MS symptoms can affect intellectual and social abilities. Sometimes this is easier to demonstrate as a caregiver through a thread of current events.

Patti surprised me Tuesday evening when I picked her up for an outing asking me about the Penn State scandal which I had read to her about on Monday. I try to make the time to read newspapers to her and ask her questions about the stories as an ongoing informal cognitive rehabilitation.

She never has recall over a day anymore, I was stunned. Yet before beginning a victory dance I realized that Patti is a Penn State alum and both long term and short term memory must be coming together in some kind of cognitive cauldron here.

Additionally ‘we’ had attended several football games together at Penn State's Beaver Stadium in the distant past. I am a U of Maryland alum and our respective universities had a football rivalry.

As a visitor I had always found Penn State a world unto itself. When 100,000+ people begin shouting in sync their signature shout and response cheer “We are … Penn State” it’s eerie.

Intuitively, now in 2011, I experimented with talk radio while driving. Needless to say the topic was the Penn State scandal.

Patti was so involved with the program I was captivated. Not only was she following it but remembering previous callers and periodically verbalizing her own two bits. Most impressive to me was her focus on the victims not the fall out. It was frustrating to see flashes of the person that was, yet discover she could not tell me what she had just had for dinner or where we were going.

Could this cauldron of long and short term memories keep breaking through? Picking her up after a 48 hr gap, Patti remembered nothing about it. It was all new to her.

We are … what we remember.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

Weird MS symptoms: cognitive falling

Watching Patti as she flails her arms, legs jerk and her wheelchair shutters from all the action I wonder if Patti is demon wrestling or I’m missing an earthquake.

Only seconds in duration and followed with an exclamation (some printable, some not), I steady her and ask – “you think you’re falling again, don’t you?”

Decades ago when Patti could still walk this weird MS symptom – cognitive falling (I THINK I’m falling therefore I WILL fall) - occurred more frequently and resulted in random falls from a standing position.

Vertigo? Hypnic Jerk? Inner Ear? Nystagmus? Myoclonic Jerk? Ataxia? Medication? All and more were considered, re-considered and dismissed.  Intermittent symptoms rarely ever fit all the criteria of diagnostic ‘billing’ codes.

I have never observed a pattern to any triggering activities neither then nor now except ‘intermittent and unexplained’. Frankly with the gap of decades unless you were me, you would not even notice the similarities.

Now in a wheelchair Patti is not at actual risk of falling from a standing position, though awareness is warranted. Even such a brief episode during assisted transfer or eating could certainly have at risk consequences.

And, of course, never does a weird MS symptom actually occur during a visit to a neurologist - well except just once decades ago when Patti could still stand.

Patti’s neurologist had just finished poopahing Patti’s recounting of cognitive falling. He was quite adamant that the human body does not fall because it “thinks it is going to fall”.

As he put Patti through her neurological exam (if you have never observed one, it borders on human pet tricks), Patti announced “It’s happening! I’m going to fall!” Her neuro calmly and professionally reassured her “No! You are not! Your legs are fine. There is no …” - Patti grabbed him for support and they both ended up on the floor.  

After I helped them both up, we at least learned that when a ‘weird MS symptom’ lands on top of a neurologist it becomes an “observed” unexplained intermittent symptom.  

Fortunately decades later, cognitive falling while weirder is at least safer.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

wheelchair friendly Open Stage of Harrisburg

While applause is traditionally reserved for performers, here I must applaud a theatre itself! Living with Multiple Sclerosis as a family will do that to you because accessibility is more than a concept.

The Angino Family Theatre / Open Stage of Harrisburg “had me at hello”, as a caregiver, when wheelchair seating easily displayed on their on-line ticketing screen. Upon arriving, when they removed the seat so Patti’s chair could just roll into the spot eliminating transfers they earned my highest label, “wheelchair welcoming”.

We chose to celebrate Mother’s Day by attending “August: Osage County”. What could be better than spending Mother’s Day with a “matriarch who careens back and forth between incoherency and sharp-tongued, foul-mouthed lucidity?” Theater review August Osage County

MS symptoms of dysarthia and Pseudobulbar affect which can cause Patti to abruptly and unintentionally interact with movie theatre dialogue had never been tested in live theatre. through MS 'symptom D' glasses

Plus Patti has evolved through MS changes into somewhat a practitioner of “foul mouthed lucidity” herself. cursing and swearing and Multiple Sclerosis, oh my!

Front row wheelchair seating was in such proximity visual impairment was erased, actors often performed within an arms reach, and referring to cigarettes as ‘ciggies’ (Patti’s favorite phrase) in the dialogue may as well have been an invitation.  

Shhhing Patti never works, best to just try and ‘reboot’ her with a touch redirecting her attention momentarily. I cannot even remember how many touch prompts it took to nip Patti’s inter-acting debut in the bud.

The play rocked, like riding a rollercoaster of dramatic and hilarious ups, downs, corkscrews, and loops. Minus the physical barriers it was all the more thrilling. Minus Patti’s cognitive barriers it was a whole new dimension. By the third act there I was with my hand poised above Patti’s arm and our daughter behind Patti with her hands poised above Patti’s shoulders, as if we were all reveling in the play while trying to keep her from periodically jumping into the play. J

No, it was not a Hallmark Mother’s Day moment, it was better.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

butterfly effect MS caregiving

Is there a butterfly effect between Multiple Sclerosis diagnosis and MS caregiving (and I suspect most caregiving situations)?

If so, then it is maddening.  You originally respond in your prime only to discover with long term care that while care needs increase your abilities and resources decline.  

I’m a big fan of visuals and simple, even at the risk of oversimplification. 

Obviously, progression of disability and care needs vary. Yet regardless of what your personal graph looks like - one side still goes up while the other side goes down.

Score and evaluate yourself with either the Zarit Caregiver Burden Interview or Caregiver Strain Index 

I’ve been at this for 21 years. Think about your answers not just for today but how did you feel 5 years ago, 10, 15, 20? Want to take a guess about next year or 5 years from now?

“Caregivers have been described as hidden patients … Financial strain, disease uncertainty, disrupted usual activities, and continuous caregiving … as many as half experience clinical depression … 61% of those providing at least 21 hours of care per week experiencing depression” Journal of Neuroscience Nursing 2008;40(1):Assessment of caregiver burden in families of persons with multiple sclerosis

“Impaired cognition is common in MS. Impaired memory and information processing speed may challenge both the caregivers' coping strategies and feelings, and may change the relationship from one of equal partners to one in which the caregiver is forced to adopt a parenting role” Caregiver Burden in Multiple Sclerosis 

Then there are always the ‘universals’ of caregiving -you will not get any younger. You are 2.5 times more likely to live in poverty than a non-caregiver (average lifetime loss of nearly $700,000 in reduced salary and retirement benefits). The toll on your health will shorten your life, up to 10 years less than a non-caregiver, and its quality.

It would be nice to insert some statistics or studies on the ‘tangible’ pluses here in the entry but there just aren’t any.

Caregiving is a choice, intangibles are always BYO.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer 

conversation MS and blarney

Riding and chatting in our wheelchair van can stretch the boundaries of whatever anyone thinks conversation means.

Outside of trying to talk with an infant or traveling to a foreign country I wonder if many of us actually give much thought to language.

Memory loss whether short term, long term or both blended with any stage of degenerative dementia symptoms is a land of words without frontiers.

Our story is Multiple Sclerosis specific so there is an additional layer of standard MS obstacles to speech and voice - slurring, scanning / pausing, volume control, and emotional lability plus pseudobulbar affect. Speech & Voice Multiple Sclerosis 

Patti, with challenged short term memory, suddenly sees something out the window and not only may the conversation abruptly change directions but change ‘when’ we are talking about as her memory may shift the conversation from now to then.

MS is all about short circuiting so it is also probable you could find yourself carrying on a seemingly rational lucid conversation with Patti and beginning to believe this entry is my hallucination. Weather is more predictable.

While professionals hopefully are trained for such communication, family and friends face not only obstacles but their own emotions. With a blink of an eye and a change in time, you may not exist. We all ‘look for’ and ‘need’ feedback or response in conversation. When we do not receive it - does it mean it is not there?

I majored in speech communication in college and all the “source => message => channel => receiver” models in the world are little preparation for communication without rules. 

45 years ago my Dad held my legs while I leaned down backwards between the battlements of Blarney Castle to kiss the Blarney Stone. Today, I know that the ‘gift of gab’ still means you have to bend over backwards if you care to make it work.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer