Bob's Mob is back for the 2023 ALS Walk. Please consider joining us for the Walk and donating to find a treatment and a cure for ALS. It's been almost 8 years since we lost Bob to ALS, there's not a day go by that I don't think of him and miss him. Bob will forever live on in our hearts!

 I was married to the most wonderful, loving and hardworking husband, Bob for a little over 28 years. 

Over 20 years ago, Bob started his own landscaping business, Accent Landscapes and was very successful with his business, doing everything from designs, estimates and installing all on his own.

We have 2 wonderful children Sydney is now 24 and Broc is 21.

In the fall of 2013, Bob noticed he was having troubles getting up from working on the ground and his toe would spasm and he started having trouble picking up his left foot when he walked. He finished out the fall season of landscaping and thought he had over done it on a couple of his jobs. As time went on, things didn’t get better, they in fact got worse!

Bob started going to the doctor to see what they could find out. Through lots of tests and more tests, nothing was showing up. Doctors were ruling out everything possible, which wasn’t leaving us with a lot of good feelings. At least we knew it wasn’t this or that, but what was it? We started seeing a local neurologist the first few days of 2014. He ran a gamete of tests and still we could rule out everything but nothing was coming up conclusive. Finally, the neurologist gave us a diagnoses of “Lower Motor Neuron” Disease, not ruling out ALS, but not conclusive either. So Bob wanted to go to Mayo to see what they would say, some birthday for Bob, we couldn’t get into Mayo until the end of March actually on Bob’s birthday. After the same tests were run there, they told us it was in fact ALS and at the time Bob had the lower motor neuron affected.

We came home to face our new life of ALS, by the end of May 2014, Bob was using a walker to walk and had voluntarily given up driving. We were doing okay, adjusting and making changes like moving our family room to the upstairs main floor living room. (Bob hated it.) By mid-July Bob was really struggling and we were having difficulty transferring Bob from manual wheelchair into the car and into bed. We began using a loaner power chair until we could get our own ordered and here.

In June of 2014 Bob went for a breathing test at the pulmonologist and they prescribed the trilogy machine for Bob, at first he was only using it at night, started using it more and more during the day. August 6, we wheeled into our ALS Clinic appointment, and ended up taking an ambulance ride from the Doctors Office Tower to UNMC across the parking lot. Bob ended up with saddle embolism blood clot and many more blood clots. This took quite the toll on his breathing and he began wearing the trilogy 24/7.

Most days Bob spent sitting in his power chair using his Tobii computer (thanks to the Steve Gleason Foundation) watching TV and visiting with friends on Facebook, text or in person, while I was working and kids were at work or at school. We had to have people come in and stay with Bob, between the times we could not be there. He hated it! He loved to talk and visit with people, but I know he felt like he was having a babysitter.

After the first part of July 2015 we started hospice to help with a lot of the issues that Bob was having related to his ALS. After about 3 weeks on hospice Bob passed away on July 24, 2015.

While we were at Mayo they recommended we start going to one of the top accredited ALS Clinics in the U.S. When we were trying to get hooked up with the ALS Clinic at UNMC, we started using the ALS Association Midamerica Chapter out of Omaha. They gave us a huge packet with videos and brochures and books all about ALS.

But the one thing they helped with was guiding us through this journey, on the little things to the big things. They asked questions, came into the house and suggested what things we need. The ALS Association has a “loaner closet” that has different equipment that we didn’t even know we needed. Equipment such as pullbars in the bathroom, shower stools, commodes. We were able to borrow a liftchair recliner that was easier for Bob to get in/out of. They loaned us a walker, manual wheelchair, we were able to get a loaner powerchair, when the time came. The ALS Loaner Closet has things that you don’t think of, because you are so wrapped up in what do we do next, where is this headed, there’s so much other things you are trying to process. You don’t think of these little everyday things, that end up making things easier for the tasks everyone takes for granted, but are very difficult for an ALS patient.

Another service ALS Association Midamerica Chapter they have monthly meetings for the ALS patient and caregiver. You are in a group, that everyone is in the same boat, going through similar problems, feelings and issues. You are there to get support and give support and get other ideas from other patients and caregivers.

They have a meeting that involves the ALS patient and also a separate meeting for the caregiver, adult family members and/or friends, which is very supportive.

 

I don’t what we would have done going through this journey without the ALS Association. They are very informed and knowledgeable about ALS.

Thank you for helping us reach our fundraising goal! Together we can make a difference in the lives of those affected by ALS. Our team is committed to raising money to support people in our community with ALS and spread awareness of the urgency to find treatments and a cure. Please consider joining our team in the Walk to Defeat ALS® or choose a team member from the list and donate to our cause. 

WHY WE NEED YOUR HELP 

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. 

That’s why we’re participating in the Walk to Defeat ALS. To bring hope. To raise awareness. To provide resources and services to families free of charge. To help unlock the mystery of ALS and find the key to treatments a cure. Will you join us? 

ABOUT ALS 

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 a person with ALS averages 2 to 5 years from the time of diagnosis. 

ALS can strike anyone. Presently there is no known cause of the disease, yet it still costs loved ones an average of $250,000 a year to provide the care people living with ALS and their families need. Join the movement to provide help and hope today!