Support Jennifer Edgell-Purdy's Fight Against ALS

Please, help with support of my Sister-In-Law, Jennifer Edgell-Purdy, age 52, as she battles ALS, Lou Gehrig’s Disease.

Jen and I met the summer between our 9th and 10 grade school year. The summer of 1989. What’s that, like 15, 16-ish years old? Instant besties. We loved the same bands (hair bands!!), hated the same classes (eww, math & science stuff), had equally big hair (thanks Aquanet!) and even bigger dreams.

OMG. We’ve seen some things! We’ve done some things! So many concerts! Cruising Dodge St. Living through cruising Dodge Street becoming illegal! Hanging out in South O on Bancroft Street till the wee hours of the morning. So much more. Great memories.

We both graduated from Omaha South High in 1992, and Jen & her boyfriend Ron married soon after in June of 1993. I was proud to have been her maid of honor, paired with Ron’s brother, Russ, his best man. 2 years later, Jen was a witness for Russ and my wedding at the courthouse! POOF…Besties now related!

Ron and Jen had three beautiful daughters, Bettijean, Alyssa and Madison, by 2001, then, with the help of family and friends, Jen was able to realize her dream and went back to school to become a nurse. It was difficult with three littles at home, slowly but surely Jen worked her ass off and graduated nursing school in May of 2012!

Jen worked in Neurology, then pre/post procedure in the Cardiac Cath Lab at Nebraska Medicine, and she fell in love with her work in the Cath Lab. She FOUND HER JAM!!! She had achieved her dream. How many of us truly have what it takes to get to do that??

Jen started noticing some physical problems beginning around February 2022. Her left leg wasn’t able to keep up when working the floor, walking around the zoo or just playing with her grandbabies, Emily & chunky baby Lucas. When she knelt, she had difficulties getting back up. She started seeing a doctor who ran tests and came up with no diagnosis. Some even thought she might be making the illness up. The difficulties quickly worsened, and she began to fall at work and home. As the result of increased falls, she sustained bodily injuries; broken bones, torn muscles, pulled tendons, bumps and bruises head to toe.

Jens 10-year nursing career ended soon thereafter. Heartbreaking that her body was turning against her with no known reason, Jen was moved to working from home, stuck behind at a computer, getting patients pre-registered for surgery. She was thankful she was still working, but sad that she was seen as a liability, and she didn’t have any answers as to why.

In September of 2022, Jen was attending her daughter, Alyssa’s, wedding and fell and broke her wrist in several places. She knew there was more to whatever was happening than just clumsiness or accidents. Finally, Jen was able to get an appointment at the Mayo Clinic in Rochester, MN.

The very last thing everyone wanted to hear, but this is when her diagnosis of ALS was confirmed.

What is ALS? Amyotrophic lateral sclerosis (a-my-o-TROE-fik LAT-ur-ul skluh-ROE-sis), known as ALS, is a nervous system disease that affects nerve cells in the brain and spinal cord. ALS causes loss of muscle control. The disease gets worse over time.

ALS is often called Lou Gehrig's disease after the baseball player who was diagnosed with it. The exact cause of the disease is still not known. A small number of cases are inherited.

ALS often begins with muscle twitching and weakness in an arm or leg, trouble swallowing or slurred speech. Eventually ALS affects control of the muscles needed to move, speak, eat and breathe. There is no cure for this fatal disease. (This is a very small synopsis of ALS. Please go to What Is ALS to find out more)

Where is Jen at now? Jen has continued to physically deteriorate.

• Jen is at home, with her husband, Ron, as her main caregiver. Her daughters help when they can.

• She no longer has the use of her legs. At all. No standing. No walking, even with ambulatory aides, that phase went really fast.

• Jen is unable to transfer herself. Meaning she can’t move herself from a chair to her wheelchair. She relies on the use of a hoyer lift

• Due to several injuries to her left shoulder from falls, Jen has extremely limited use of her left arm and hand.

• Most ADL’s (activities of daily living) bath/shower, toileting & continence, hygiene, mobility she is unable to do 100% on her own.

• She IS still able to feed herself, put her hair up, and work on limited arts and crafts for fun.

• She’s able to hold her two oldest grandchildren, Emily and Lucas, but can only hold the littlest, Little Miss Izzie, very little. She’s a WIGGLE WORM!!! Someone has to be in the same room, right next to Jen, as she just doesn’t have the strength to manage Izzie.

What are Jen’s needs right now?

• Jen’s current immediate need is in home health care aides when Ron is at work. Yes, he’s the main caretaker for Jen, but also the main breadwinner in the family. 3-4 12 hour shifts a week. The minimum cost is $30 an hour (the cheapest).And they will have to private pay.

• Jen’s retirement was drained to purchase a wheelchair accessible van.

• Home modifications are being made piece by piece, as money and assistance becomes available, which is at a halt right now.

• These needs will continue to change, as the disease further rips away Jen’s abilities and dignity.

Through the local ALS of the Heartland, Jen has participated in several trials, only to be removed because the medication either did nothing or sent her numbers spiraling out of control.

Can you imagine not being able to hold your grandbaby? Not being able to play with them? All they can do is sit on her lap and watch tv or play on an tablet.

Can you imagine being a physically fit woman, having a beautifully active life in all manners with your husband by your side, now not even being able to roll from one side to the other in bed by yourself?

Can you imagine working for 12 years to achieve your dream job, only to have it savagely taken away by an incurable disease?

Can you imagine going from caring for other people to being almost 100% dependent on people to take care of you?

Can you imagine being SO excited to live your life around all of your grandbabies, to watch yourself slowly fall into physical disrepair, knowing that this disease is fatal, and you will almost certainly not be around to see them grow up?

Every small movement that we take for granted is now an impossible or a terrible struggle for Jen. Sitting up in a chair. Sitting back in a chair. Getting a drink from a cup on the table. Getting a hug from a grand baby. Putting your socks and shoes on. Moving from one room to the other. Texting on your phone. Making a phone call. Moving your legs into a different position because of comfort. Moving your hair behind your ear to get it out of your face. Blowing your nose. Buttoning a shirt or pants. Painting your toenails. Coloring a picture with your grand baby. Cooking yourself or your family a meal.

Jen has always been family oriented. Wanted children from a very young age. Had 3 beautiful girls, and now 3 beautiful grandchildren, only to have ALS slowly rip any physical relationship away. And we all know the realization that it’s only going to get worse as the clock ticks away.

Jen is confined to wherever she is at that moment, if she is ever by herself. Her lift chair, her wheelchair, her bed, etc. They DO have insurance, but they are taking their sweet time on seeing if/what they will cover anything, and we’ve called many Health Care Companies, and they don’t accept the insurance that the family has. And, despite everything I’ve told you, she’s not nursing home level of care yet. And Jen wants to stay in her home as long as possible, but can no longer be alone. They will have to private pay.

Neither Jen nor us are blind to what the future holds for Jen. What we don’t know how much time she has left. We know that this disease is stealing her abilities and faculties fast. We just want to make what life Jen has left as dignified, respectable and easy as possible. We want Jen to be able to enjoy what she can still do for as long as she possibly can. We want to keep her self-respect and self-esteem intact for the remainder of her lifespan.

Please, consider donating and/or sharing this story and donation link for us.