Mom: a brief history and an update

The DIY queen.  Please note that she's wearing heels.

graduating from nursing school

Deb is a mother of three girls, Michelle, Carrie and Jackie (that's me!), and "Oma" of two, Jax and Celina. She was a registered nurse and then a stay-at-home mom to her three little Army brats. She spent several years working as a home health aid to hospice patients in New York before moving to Georgia in 2005 to take care of her elderly mother full-time.


Prior to 2011, Deb walked several miles each day with her dachschund, was known for her beautiful gardens, cooked everything from scratch, collaborated on DIYs and never hesitated to lend a hand to any neighbor in need.

Mom with Michelle and Carrie.  Her favorite job was raising kids.  I think she did a pretty good job ;)

Mom and Dad pumping iron on the beach.

 Early in 2010, Deb noticed that her right shoe was dragging while she was walking the dog.  She tried tightening the buckles, but had to transition to sneakers by summer.

She and her doctor speculated that it was a residual effect of a medication she had been taking.  When there was no change after discontinuing the prescription, they pursued other avenues.

Life was busy at the time - her mom was dealing with leukemia and advanced stages of Parkinsons and required almost constant care.  Deb had also begun a huge home improvement project, "I was in the midst of removing wallpaper and painting eight rooms and the hallway in the house," she said as she reflected on the difficulty she was having climbing the ten foot ladder.  Fall arrived and the fatigue was becoming more than just a nuisance.  She spent long stretches of the day laying down and catching up on television shows that she'd never had time to watch before.  Twenty minutes of Physical Therapy left her legs feeling rubbery and wiped her of energy for the day.

 As months passed and the symptoms worsened, her doctor decided to take a closer look. They tested for an array of diseases and disorders. She had an MRI of each section of her spinal cord and brain, Three EMG & NCVs (I'll spare you the details of these - they make me shudder). They drew multiple tubes of blood for testing and she had to have a spinal tap and a muscle biopsy.  They were testing to rule things out. Finally, in the spring of 2011, there was a diagnosis -- the gravity of which, a woman who had devoted years of her life to medicine was painfully aware of.

Me, Gran and Mom in September of 2010.

Carrie and Mom

 ALS, often referred to as Lou Gherig's Disease, is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of a person with ALS is two to five years from the time of diagnosis. There is no known cause to this disease and there is no cure. At present, there is only one treatment - a drug, Rilutek, that has been found to improve survival only to a modest extent.

Carrie flew in from California to accompany Deb to the Mayo Clinic in Jacksonville, Florida, where she would get a second opinion.  It was there that her diagnosis was confirmed and she was referred to an ALS clinic in Augusta - two hours from where she lives.

"I asked my ALS Clinic about what trials they were involved in when I had my initial visit," she said.  "They allowed me to begin the screening process that day."  They were beginning a trial that involved an antibiotic called Ceftriaxone and the trial had been difficult to fill, as it involved surgically implanting a Hickman Catheter into the patient's jugular vein.  From there, the patient would receive doses of the antibiotic or a placebo through twenty-minute IV infusions twice daily.  The trial required monthly visits to the clinic and a designated caregiver.  "The monthly visits could be a problem for some who lived farther away from the trial site.  I'll admit that the four hours in the car became more trying for me as my mobility declined."

Me getting ready to give Mom one of her two daily injections.

Still, Deb wanted to sign up.  "This is a horrible disease and places a tremendous financial, physical and emotional hardship on the families who have to care for and watch their PALS succumb to this 'creeping paralysis.' We need to find a way to to slow progression and a cure.  I was eligible and with Carrie's sacrifice to move cross country to sign up as my caregiver, we were able to be a part of that process."

Shortly after the start of the trial, her doctor took her off of Rilutek because of complications with her liver.  "You can live with ALS, you can't live without a liver," he told her.

She continued with the Ceftriaxone trial for ten months.  "I was supposed to participate for one year but had to drop out at ten months because of the side effects related to the antibiotic.  The study ended shortly afterwards because they weren't seeing the efficacy they had hoped for and the risk of infection for the placebo group was too high."

Mom being a beach babe.

Oma and Celina

Every 90 minutes a person in this country is diagnosed with ALS and every ninety minutes, another person will lose their battle against the disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries. Presently, there is no known cause of the disease, though support is bringing researchers closer to an answer. In the mean time, it costs an average of $200,000 annually to provide the care ALS patients need.

Deb lives in Georgia and Carrie provides full-time live-in care for her.  Michelle lives within a five minute drive, offering back-up care and entertainment by grandkids when needed, and I am racking up the frequent flier miles by visiting as often as I can.

 Mom can no longer walk and spends her days in her power wheelchair and in bed. Transferring without assistance has become impossible without the use of a transfer board: a long, smooth plank, to slide her from one to the other.  A Hoyer lift is waiting in the wings for when her trunk muscles grow too weak for them to safely use the board.  She has always been soft spoken, but the Speech Therapist at the clinic began noting that the force she's able to project her voice is declining at each visit.  Now her speech has some noticeable slurring, which is especially pronounced when she's tired.

ALS has taken so much physically and emotionally from my mom and from our family, but it hasn't taken everything.  My Grandma always told us "it's better to laugh than to cry," and we've maintained a sense of humor that she'd be proud of - I know I am.  More importantly, my family is incredibly close - closer than we've ever been.  Dealing with this disease puts things into a perspective that so often gets lost in today's world, and it's taught us all so much in addition to a wealth of medical knowledge and experience we never expected to have (how many photographers do you know who can flush out a Hickman's catheter?).  It's taught us about priorities and gratitude, family and friends.  And we're so grateful for all of you have sent love and support.

Mom, her girls and her grandkids, spring 2012.

Mom, me and our pups, Snoopy and Susie.

Here are three ways you can help:

1. Spread the word.  Whether it's linking to this post or another of the countless stories out there about people dealing with ALS, tell people about it.

2. Donate.  You can donate to your local ALSA chapter or donate to ALS Guardian Angels, who provide grants for people in need and provide direct help in getting critical equipment to those in need.

3. Walk.  The ALS Assocation sponsors fundraising walks all over.  On October 21st, I'll be attending the Hudson Valley's Walkway Over the Hudson with other local families and friends who have been affected by ALS and you're welcome to come! You can join here.

Positive energy, prayers, kind thoughts, good vibes and all that jazz don't hurt either :)

Team MotherPfeffer at 2011's Walk

If you're curious about what kind of person my Mom is (she's the best kind), this story describes her pretty accurately.

Walk to Defeat ALS: Highlands/Poughkeepsie, New York

The Hudson Valley's Walk to Defeat ALS was on Sunday and it was such a great experience.  There was live music, food, and almost a thousand people - which is so incredible, considering that there were only sixty participants at the first walk just three years ago.  I'm looking forward to helping that number grow even more over the coming years.

Thanks to the generous donations of friends, family, clients and colleagues (and one anonymous donor - thanks, anonymous!), our team contributed $1770 to the total $60,000 that was raised!  According to this article on the event in the Poughkeepsie Journal, the money will be used "to fund a program to lend patients equipment that may not be covered through their health insurance."

I'm so grateful to everyone who donated, spread the word and/or sent kind words and sweet thoughts our way!  I feel really lucky to know you all.

You can read more about Lou Gherig's disease and my family's experience with it here.
And here's a link to my mother's day post - our first encounter with ALS and one of the many reasons my mom rocks.

Walk to Defeat ALS: October 16, 2011 in Poughkeepsie

My mom and I a few months before her diagnosis.

It began in her left foot.  Her toes refused to lift toward the sky when she told them to.  Her doctor speculated that it was residual effects from a medication she was on and prescribed physical therapy.  As months passed and the symptoms worsened, he decided to take a closer look.  They tested for an array of diseases and disorders.  She went through CAT scans, biopsies, neurological exams, a spinal tap.  We're testing to rule things out, he said.  Then, a diagnosis -- the gravity of which, a woman who had devoted years of her life to medicine, was painfully aware of.

"Often referred to as Lou Gehrig's Disease, amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of an ALS patient averages 2 to 5 years from the time of diagnosis." (the ALS Association)

There is no known cause to this disease and there is no cure.  At present, there is only one treatment - a drug that has been found to improve survival only to a modest extent.

Since my mom was diagnosed with ALS this past spring, I've been doing a lot of hoping.  I hope that my mom will be provided with the best medical equipment available as the disease progresses and I hope that the incredible doctors and scientists who specialize in ALS will make great strides that will improve her prognosis and I hope that more people start taking an interest in defeating this disease.

On October 16th at the Hudson Valley's Walk to Defeat ALS event, I'll be walking to raise money for the ALS Association in honor of the woman who taught me how to walk, and your support would mean the world to me.

Walk. Donate. Spread the word.

"Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.

This crippling disease can strike anyone. Presently there is no known cause of the disease though support is bringing researchers closer to an answer. In the mean time it costs an average of $200,000 a year to provide the care ALS patients need. Help make a difference and donate or join a walk today." (the ALS Association)

A mother's day post about my first encounter with ALS and why my mom rocks.

My page on the ALS Association - more information or to make a donation.

Happy Mother's Day

Especially to mine.  I really lucked out in that department.

Love you, Mom!

Location: Berchtesgaden, Germany
Photo credit: my dad

I try to keep the posts on here predominantly visual (a picture's worth a thousand words or something), but in honor of mother's day I'm switching things up and sharing a story about my own incredible mom.

...

When I was in middle school, I had a friend named Clay.  Prior to our first meeting, I remember my mom maneuvering our family's black suburban around those windy upstate New York roads.  She told me that I'd meet Clay, that he loved the beach and that he used to make his living as an automechanic.  She told me that he lived alone, having divorced his wife years prior and that he had a son older than me that he didn't see too much.  She told me he'd need a lot of help with things when we were there.  She told me not to be nervous or afraid when I met him and then she told me about his disease.