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/

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 2013, TWO 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 …

The few,the proud, the MS Spouse Caregivers

by Patrick Leer—May 27th, 2013

Patrick Leer

Health Activist:

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

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

veterans our trancendental caregivers

151 years ago a succesful farmer named George R Decker simply did the right thing. Riding 50 miles north from his farm near the Mason Dixon line dividing northern and southern states, union vs confederate, or slave states from free states to join the 17^th Pennsylvania Calvary for the duration of the US Civil War charging through most of the battles of the Eastern war including defending their home State at Gettysburg. . 

Living with Multiple Sclerosis as a family may not always be associated with saying thank you; however we are really no different. 

It’s Memorial Day and we honor and give thanks to the men and women who are IMHO the transcendental caregivers.

This picture holds some powerful DNA for both survival and caring. While none is mine, it was my honor to reunite 3 generations of his descendants where he and his wife’s remains rest in New Freedom Cemetery, New Freedom, PA on this Memorial Day 2013.

No one ever promised a perfect world but our veterans guarantee us a free world. 

Local veteran groups pesented an inpirational small town American Memorial Day. 

Patrick Leer

Health Activist:

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

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

8 milestones of a caring life

Since my own My Lung Cancer Odyssey leapt from Stage 1 to Stage 4 recently, I am finding each morning more like looking at a surreal gate.

Which may or may not have to do with the life fact that I have cared for my wife’s severe Multiple Sclerosis for a quarter century and my own lung cancer for only 17 months.

Oddly this morning reflected in the dawn showers I found myself back in the summer of 1988. Our world as a young family starting out was 13 months from exploding. Patti had been diagnosed with ‘probable MS’ in 1985 but the minor symptoms were receded and forgotten.

We were sharing a vacation house with Patti’s brother and sister in law and their daughter at Nag’s Head, NC. 

My brain was stabbed awake just before dawn and I gave up on sleep. Unlike migraines, with my Cluster Headaches light, motion, and activity always helped soothe.

Soooo why not carry our daughter down to learn to greet dawn at the beach. 5 months old is never too young.

I also found myself wondering about parents? I cannot even imagine what it would feel to be a parent when your adult child’s life explodes from a monstrous diagnosis like MS to a dependent life which you cannot fix - just hold and soothe. Life really is told in minutes of care.

Patti’s Mom, Gloria Decker celebrated her 80^th birthday today. Patti safe, secure, and attended was in the care facility. How aware or even wanting to participate with her siblings was doubtful. MS has a way of flipping life with age. Young adults cannot remember, cannot participate.

Gloria has been a mainstay for Patti, always visiting always encouraging, loving unequivocally.

We wanted to do something special that even Patti could see and enjoy. …. and putting our heads together we decide to try and create  a ‘milestone picture’ featuring 8 firework fountains for each milestone year of 80 years of a caring life. 

Living with MS as a family creates a special kind of family.

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/

"D'oh!"

Voting with Patti is always entertaining. MS symptoms from visual impairment to memory to disinhibition,  IMHO revolutionizes voting at a polling place.

NO she will not use ‘accessible’ mail-in ballots. She wants to vote.

Today was primary elections for local government. 

Our family if anything is NEVER lockstep. With one Republican, one Democrat, and one Independent – the Independent voter was not eligible to vote in the primary and that would be Patti.

My brain fahrt! However a poll worker sat and talked with Patti (they likewise have enjoyed her from previous elections) while I voted.

Can you believe they even now have a talking voting machine for visually impaired?

Of course, always enjoying the way Patti argues with talking crosswalk poles and grocery store self-check machines … I could only imagine what today could have been.

Regardless we enjoyed finger food in the backyard on a sunny afternoon while a gentle breeze scented the air with lilac.

Watered flowers are frowned at in Patti’s care facility as frankly they demand to much attention for staff … so I cut Patti a bunch of lilac and sent it back in a basket kind of like fresh lilac potpourri.

Megan did actually let me drive Patti literally around the corner to the polling station before taking over and driving her back – in Patti’s words, “I just want to go to sleep”. 

Living with severe MS as a family can sometimes teter between frustration and somewhat incomparable time together. 

Patrick Leer

Health Activist:

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

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

Sunday family fun and finger food fest

As my wife’s MS spouse caregiver I have always been in charge for the last quarter century, sometimes even accused of being a ‘control freak’.

Nothing ever prepared me for people helping me. It is a quantum change that frankly has humbled me.

Since my single and brief episode of syncope last week my daughter restricts my driving. While medical science may not totally back her restrictions, she did after all witness her Dad go from standing and talking in one moment to laying on the floor the next.

A common sense return to driving was the approach advocated by my neurologist, as lung cancer metastatic lesions in the brain can trigger dizziness, falls, etc. Meds and of course radiation therapy are in theory shrinking metastasis with each treatment and as a result reducing pressure on brain functions.

She did let me drive to Loew’s Saturday morning. I was beyond impressed as somehow she arranged a simulation exercise in their parking lot. As I pulled into the parking lot an outdoor forklift bolted out of the blue spilling a couple dozen large bags of mulch immediately in front of me. I stopped on a dime and frankly sat there smiling like the cat that ate the canary watching them work.

Sooo it was not only our Sunday family tradition but a treat when my daughter offered to pick Patti up from her care facility for a finger food fest at home featuring mozzarella sticks, fried pickles, shrimp basket, chicken tenders and breaded mushrooms from JoJo’s Pizza.

Finger foods of varying shapes and textures somehow empower Patti to self-feed and safely feel a bit more independent.

Somehow we just have to stop watching NBC’s “Hannibal” on FIOS Demand with dinner. Tonight a guy driven by brain metastasis becomes a psycho serial killer while Hannibal ponders if eating someone with lung cancer is ethical even sensitive. Personally I was getting more than concerned about Patti and Megan’s rapt attention to the show.  :) The camera caught Patti's focus and believe me she rarely has such laser beam focus from decades of MS visual impairment and cognitve symptoms. Then again Hannibal Lechter in any incarnation is someone you keep track of. :)

Whatever … it was family time, we laughed, enjoyed ourselves on a georgeous 64°F (17.7°C) perfect MS friendly late afternoon and had fun … that is what family should be all about even when I cannot be the catalyst.

“Our prime purpose in this life is to help others.” Dalai Lama XIV

Patrick Leer

Health Activist:

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

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

vegetarian chili, carnivores, and cannibals

With almost a quarter century of living as a family centered on caring we find things to celebrate. Today was my first day of radiation therapy for my Stage 4 lung cancer metastasis to the brain.

Safely residing in her care facility with Multiple Sclerosis dementia erasing Patti’s awareness of my health issues we decided to have a family dinner at home. Our daughter is a vegetarian but has been craving a chili dog, with my newly radiated brain I offered to create a vegetarian chili dog.

Megan retrieved Patti while I did the cooking. Using a South Beach Diet Vegetarian chili recipe I made the chili from scratch which also gave me an excuse to test that my fine motor skills, memory, and such were still functioning.

Using Morningstar Farms Meal Starters Grillers Recipe Crumbles for the ground beef alternative and Morning Star Farms Veggie Dogs for the hot dogs … abracadabra you have a chili dog with a whole lot less fat that could fool any carnivore.

The laughs are because we were watching a NBC TV Show “Hannibal” which raised the bigger question ‘OK so I can fool a carnivore but could I fool a cannibal?’

Patrick Leer

Health Activist:

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

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

Wheels Of Freedom And Independence

Fielding a question over on MultipleSclerosis.net, “How do you make the move to a mobility aid like a scooter or wheelchair? I still haven’t gotten used to the stares when I use my cane, you know, I look so good….”, I found myself reminiscing over that transition era when personal vehicles whether her Rascal Scooter or wheelchairs were about Patti’s independence and freedom in a dependent world. 

Wheels Of Freedom And Independence

Posted by Patrick Leer—May 7th, 2013

Living with MS or any chronic illness or disease “as a family” takes wanting to share and adaptability. Amplified by metastasis of my lung cancer and falling risk - it seemed all the more important to hug a memory.

Thanks again to MultipleSclerosis.net for inviting me to share longer versions of our story and sure wishing something like this existed in the late 1980’s.

Patrick Leer

Health Activist:

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

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

Mother's Day with Multiple Sclerosis 1994

Hallmark Holidays are a pain in the ass. Now there is an idea for a sentiment for a card. However my job as MS spouse caregiver is simply to make it happen for those who cannot.

I even confess to a chip on my shoulder at times since 1989 I have been basically raising Megan as a single parent and I have played roles of both Mother and Father to Megan. PLUS I would have to serve as Patti’s surrogate in acquiring cards, gifts etc for her Mom.

My own Mom died in 1997 from complications following a massive stroke a decade earlier.

In the early 1990’s Patti was taking immune system suppressant meds for MS. Needless to say any and every germ our daughter brought home from Pre-School, Kindergarten and Elementary school latched onto Patti’s suppressed immune system. We experimented with a healthier routine of Patti alternating months staying in Pennsylvania with her parents and in Maryland with us.

The week before Mother’s Day 1994, Megan asked me if she could make video card for Mom on a video drawing thingamajig she enjoyed playing with explaining that if I videotaped her making the card we could mail it to Mom who could watch it on a big screen TV at her parents.

As she had only turned 6 two weeks earlier I stared in disbelief before realizing the idea could work …

Without further background please join us for 90 seconds from the week before Mother’s Day 1994.

Drawn, narrated, and directed entirely by Megan it was difficult to video tape the original 10 minute version through eyes tearing up with pride and love.

For the record Megan never walked across the street hand in hand with her Mom. In retrospect when you grow up with a parent disabled with MS, I guess kids do more pretending then we realize.

Patrick Leer

Health Activist:

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

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

Time warp Monday with Multiple Sclerosis

Frankly I was feeling a touch guilty as I drove to pick Patti up for an outing today. Yeah I was more than a little busy last week, How do you measure a week, livingwith lung cancer?, but two outings a week just seemed too few.

Trying to apologize she tells me her memory sucks and she did not notice. I can hear our daughter smiling “I told you so”

Sooooo I drive around stopping to get her some of her favorite finger foods, she laughs heartedly at the audio book we are listening to, and bring her home where she can enjoy her ciggies on our back patio and position her bowl/plate on her lap.

After about a handful of bites she wants me to take the plate because she’s tired and just wants to go to bed. .. sigh! 

MS caregiving can be confounding no matter how long you have been doing it. Weather was too cool for Uthoff’s Phenomena to be in play. I stall her for a couple more minutes as she devours a Popsicle and then we are off.

Later Monday evening I read on Facebook “Patrick shares the most challenging MS symptoms from a caregiver's perspective: http://multiplesclerosis.net/?p=796”

As always I am thankful to MultipleSclerosis.net for inviting me to share the longer versions of our story 

Caregiving: The Most Challenging MS Symptoms, 

Posted by Patrick Leer—May 6th, 2013

in this case reading the time warp entry reminds me of what I am grateful for. The care facility era of living with MS as a family is less physically demanding on the spouse caregiver. Less stressful and more assistance for Patti. … and most of all as Patti once raised herself “what if” something happened to me she never ever wanted our daughter to give up her life to be her caregiver.

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

Uthoff’s Phenomena and summer fun with MS

As a caregiver it can be hard to shake the feeling that the person you care for is always better off when you are around.

Earlier this week I arrived at Patti’s care facility to take her for a push and roll and some dinner. Instead I was surprised to find her sleeping.

Reflectively I put my hand to her forehead to check for a fever. Her eyes blinked open, “I am trying to sleep because I feel like shit - I do not have a fever, you idiot man”. … Hi there and nice to see you too Patti!

Laughing I go get her a cup of ice and ginger ale with a flexible straw. Playing around with bed adjustments we settled in to watch the end of “Ellin” followed by “The Simpsons”.

Glancing above her bed I noticed the oversized room thermometer is near 80˚F(27˚C).  May is the time of year Uthoff’s Phenomena annually rears its pain in the butt head.

Opening her windows, her room cools rapidly toward 70˚F(21 ˚C), assisted dinning staff detours her tray to her room and I become her personal room service waiter as she enjoys eating dinner to the “The Simpsons.”

Living with MS as a family it’s not always about putting my hand on Patti’s forehead but checking the room and outside temperature.

Again, I would like to thank MultipleSclerosis.net for inviting me to share longer versions of our story: 

Uthoff’s Phenomena and summer fun with MS

Patrick Leer

Health Activist:

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

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

caregiving care giving care facility