Life Lessons from Living with ALS

Deb Endress’ ALS symptoms began in the summer of 2022. She passed away 18 months later, in December of 2023. Despite her rapidly progressing disease, Deb maintained a strong spirit of determination and a wry sense of humor. To help her cope with her constantly changing ‘normal’, she chose to find the lessons and silver linings in the things that only someone with ALS would understand.

Deb’s husband Jim and their family have generously shared her insights and given us permission to share some with you. We are grateful to have had the opportunity to get to know this beautiful soul.

Stuck at the Lake

On a warm, sunny, summer day, I was very excited to have my friends take me to the lake. I love being on my pontoon boat. It’s the best therapy there is. When we arrived, Marie and Shauna both leaped out of the van to unbuckle the safety belts that secure my wheelchair when traveling. The ramp from the van unfolded and I was ready to go.

But, in my hurry to exit the vehicle, I didn’t take time to straighten my wheels and consequently the wheels became wedged halfway down the ramp and I could not go forward or backward. On the wheelchair control pad a brake error light, which I had never seen before, kept flashing.

I did have my wheelchair seat belt on, but that didn’t stop my friends from freaking out. They are both problem solvers and we found two helpful gentlemen to help us get unstuck.

ALS Lesson: So, if you get stuck on the ramp coming out of your van, be sure you are parked facing the lake instead of the parking lot. The view is much better.

The Branson Belle Bathroom

Determined to travel as long as I can, we decided to head to Branson because my best friend from high school had never been there. In my opinion, many of the Branson shows feature less-than-stellar performers, but we laughed our way through several. The very best show we saw was the talented singers and dancers on the Branson Belle Showboat. The food was awesome. It was great to be on the lake after the traffic and congestion in the downtown area. The show featured songs from the 80’s and 90’s, and the many costume changes added to the entertainment. And ladies, the gift shop was awesome.

Everything was great until… we entered the handicapped bathroom. The door opened in, which made it next to impossible to get the power wheelchair in – even after several attempts. My friend Amy Jo was straddling the toilet to make room for me and my powerchair. We finally got the powerchair in but soon realized that neither one of us could reach the door to shut it. With the chair taking up so much room, my friend could hardly begin to support me as I pivoted to reach the toilet. The handicap bars never seem to be placed in the right position for MY limited mobility. We were laughing so hard that the lady in the next stall asked us if we were having a party.

ALS Lesson: When you get stranded in the bathroom, don’t start to laugh because the results (leaking) are not desirable.

The Swimming Pool

One of the reasons we chose the hotel we stayed at in Branson was because it had a handicap-accessible, heated, saltwater swimming pool and hot tub. Anybody who knows me knows that I need to be IN the water. The players of the day were my friends Laurie and Steve, Amy Jo, and my husband, Jim. So, after the 15-minute struggle to get me into the swimming suit, we all paraded to the hotel’s heated, saltwater pool. The next difficult task was to get me from my powerchair onto the lift chair and get me safely buckled. This took ALL 4 players! As you can imagine, all of the other people around the swimming pool are pretending not to watch – when you know they are. My husband pressed the control buttons to swing me out over the pool, but… he could not get the chair to drop down IN the pool. After several attempts, he announced he was going to find a maintenance man. Meanwhile, I’m still hanging above the pool with everyone watching. I finally announced, “I am so glad that I could be your entertainment for the afternoon.” And Laurie chimed in, “There will be another show at 4:00 at the hot tub. Be sure to join us!” And then she walked over to the controls and pressed one single button – and lo and behold, I was lowered into the pool. Everyone applauded!

ALS Lesson: Be sure to check the controls BEFORE putting a handicapped person onto the lift chair.

My Hot Tub

Everyone who knows me knows that I love to be IN the water. My sons rigged up an inflatable hot tub in our garage. When the National Seating Mobility men came to hang the rails for our lift/sling, my son, Josh, talked them into putting an additional rail in the garage so that I could be lowered into the hot tub.

After several visits to the hot tub, we ran into a problem. My caregiver had me in the sling, up out of the water, and was ready to slide the sling over to my chair – but…the remote slipped out of her wet hand and fell into the water. When we fished it out, it no longer worked.

So, I’m hanging about 4 feet above the hot tub dripping wet. The sling will not go up or down. Being the problem solvers that we are, we used a blow dryer to dry out the wet remote and also placed a call to the National Seating Mobility company. You guessed it – the blow dryer didn’t work, but…we learned how to override the system.

ALS Lesson: Don’t drop the remote in the hot tub.

The Circle of Control

My friend Gary and I have taught stress management classes for many years. Using Stephen Covey’s model of the Circle of Concern, Circle of Influence, and Circle of Control, we have helped many teachers, parents, and students understand the choices they have to manage stress.

Shortly after my diagnosis of ALS, I went to visit a young, inexperienced counselor. While discussing coping tools, she asked if I was familiar with Stephen Covey’s Circles. I told her that I was. She asked me what circle I might be in. I told her I was in the Circle of WHAT THE F**K IS GOING ON! I soon found a different counselor.

ALS Lesson: Make sure your counselor can handle your anger.

On the Dock

To get me out of the house and still accomplish something that needed to be done, my friend Marie and my favorite sister-in-law Shauna were game to wipe down the boat seats to be ready for the summer season.

The drive to the lake was uneventful but as soon as we pulled into the parking lot the anticipation of being on the lake hit me full force. After being stuck on the van ramp, we assumed our adventures were done for the day. Little did we know they had only just begun.

To get to my boat I had to navigate the steep ramp down to the dock. I waited patiently on the dock by my boat while my support team cleaned the seats (FYI-Dollar General Mold and Mildew $1.50/bottle is better than all the other products out there for removing mold.)

All was going well until it was time to leave. That steep downhill trip now became a steep uphill trip. Because the lake was so low, there was a 4-inch gap between the dock and the bottom of the ramp. Every time I tried to get on the ramp my front wheels would hit the ramp and the whole power chair would jerk to the right, dangerously close to the water.

I told Marie and Shauna, “I’m just going to back up and gun it and we’ll see what happens.” My normally quiet sister-in-law quickly found her voice and stepped in front of me, blocking my path. She shouted, “No you’re not.” Being the problem solvers that we women are, we tried many things including finding a board to fill in the gap, using the 5-foot ramp (which was way too big) and considered many other options.

We finally decided to make the situation someone else’s problem. We called security and got a less-than-enthusiastic response from the security officer who told us it would take him at least 15 minutes to get to us. I told him, “I wasn’t going anywhere so we’ll wait.”

When he finally arrived, he too had difficulty coming up with a plan – no surprise there. Luckily, he was a big guy and actually lifted the front of the power chair with me in it onto the steep ramp and pushed until all six wheels were on it and I could drive myself. We then had a conversation about what needed to be done to make the ramp wheelchair safe for me.

ALS Lesson: Don’t be afraid to give someone else ownership of a problem to make your life easier.

Broken Chair Lift

After an hour drive to OT and PT, two hours at the clinic, and an hour to get back home, I was desperate to go to the bathroom. I exited the van, drove to the wheelchair lift to take me up to the ground floor of my home, and pressed the up arrow. When I was about 2 feet off the ground, the chair lift made a terrible sound and quit.

My husband is a great guy and very intelligent but…when faced with a crisis, he struggles coming up with options, as many of us do, especially related to my safety. After hitting the up arrow continually for a few minutes, I suggested to him that this was not working and we had to come up with another plan. My husband’s solution was to call the guy who sold us the chair lift. Of course, he was not in and we were told he would return the call but were given no timeline.

So, I texted my son who was working about 20 minutes away, and got no response. Next, I texted my neighbor because I knew he had a mechanic working with him and hoped they could solve the problem. I also texted my son-in-law and asked him to head to the lake to get the 5-foot aluminum ramp so I could at least get off the lift. A few minutes later I had eight men working on the problem. It was a bit overwhelming; not to mention I was sure I would pee my pants.

Then I called my friend Vicky to come over and provide reinforcement. I needed a friendly face and someone who could take pictures of yet another ALS adventure. Forty-five minutes later, I realized I only needed my son and son-in-law who calmly used the ramp to get me back down. They then took things apart and had our local fabrication shop make a new piece that was broken.

However, that’s not the end of the story. I had to drive my wheelchair over the bumpy, hilly lawn to get to the back of the house where the sliding glass door handles had to be removed and the aluminum ramp set up before I could even get in the house.

ALS Lesson: Make sure you have a brilliant son and son-in-law and a girlfriend to have your back when the going gets tough.

You Can’t Fix Stupid

To break up our trip to Florida, we spent the night in Nashville. We had reserved a handicapped-accessible room, explaining in advance my mobility issues. Upon check-in, we were given the keys to our 4th-floor room.

We unloaded the car, with me in my powerchair and all of my equipment in tow. We got on the elevator pressed the 4th floor button, the doors closed and nothing happened. My husband kept punching the button as if that would speed the process – he was determined to move the elevator. Still nothing happened, so we got off the elevator, went back to the lobby, and were told “Oh, that elevator isn’t working.”

I asked myself, who puts the mobility unit on the 4th floor? Did they think this would be a problem? We were told the elevator repairman would be there the next day. Does that help the person in the wheelchair to the 4th floor? Whose brilliant idea was it to put the handicapped-accessible units on the 4th floor? You really can’t make this stuff up.

ALS Lesson: You can’t fix stupid.

Maddie

After three physical therapists, we were sent to see Maddie. I truly believe that God can drop just the right person in your life and at just the very time you need them. Such is the case with Maddie.

From our very first meeting, I felt some special connection to her. She never had a plan for what we would accomplish during a session but rather asked me what issues I was facing and that is what we worked on first. She was compassionate and caring and always seemed to be positive even as my disease progressed. She took time to explain what she was doing and why she was doing it. She even came to our home to give my family and friends a tutorial on how to use the sling and lift. Her ability to read my mind and know what I needed was so important because that has happened very infrequently in treating this disease.

Maddie has been a true blessing in our lives and I can’t imagine traveling this journey without her.

ALS Lesson: Find yourself a Maddie!

The Beach Wheelchair

We chose Destin, Florida as the destination for a winter getaway because we were told Destin has three companies that rent beach wheelchairs. We called in advance to reserve a chair and were told they would deliver it to our hotel.

Anticipation and excitement were abundant as the day approached. The chair had huge wheels to travel on the sand and I was so excited to head to the beach. Imagine my dismay when I got to the boat, which was taking us to the beach, and found there was no way in hell that beach wheelchair was going through the little tiny opening to get on the boat.

No one at the beach wheelchair company or the hotel concierge gave us any inkling that it might be a problem. So, $250 down the drain! After several emails, they did reduce the fee to ½ price, and I sat in my transport wheelchair, stuck in the sand.

ALS Lesson: Ask all kinds of questions and still be prepared for things to go wrong.

Warren School

My colleague Gary and I were presenting at Warren School for a teacher in-service. Upon arrival, I asked where the closest handicapped-accessible restroom was. One of the teachers walked me down a hall to show me the restroom which, of course, was locked. He left to get the key and upon return let me in the restroom that opened in.

It is very difficult and requires a doctorate degree in maneuvering to get a power wheelchair in a tiny restroom and get the door (which opened in) closed. Somehow I achieved that goal and did my business.

However, the handicapped bar was on the right side of the toilet and my left arm didn’t work very well. Every time I tried to pull my pants up with my good right hand I lost my balance. I was getting very frustrated.

As I was gone a long time, Gary came to see if there was a problem. Through the bathroom door, I let Gary know he was going to have to come in and pull up my pants. But when he tried to enter, the door was locked. He had to find someone to once again unlock the door because I couldn’t crawl across my power chair to unlock the door with my pants down. You can’t make this s**t up.

ALS Lesson: Be prepared for all your traveling companions to have no problem pulling up your pants.

Social Media

ALS organizations have valuable posts on Facebook with resources and articles to help you learn how to best manage this disease. Following are just some of the adjectives mentioned in the comment section after each post: “devastating, horrifying, terrible, cruel, awful, debilitating, tragic, miserable, savage, inhuman, vicious, worst way to die.”

Knowledge is power and can help you be proactive in handling the symptoms, but… always focusing on worst-case scenarios and all the negatives robs you of many of the day-to-day moments that make your life better.

ALS Lesson: Don’t focus on the negative comments from ALS posts.

The Cup Half Full

My husband, Jim, is ready to give me my nighttime medication. He is used to dumping all the pills in my mouth at once (around five).

When he went to dump the pills in my mouth he also handed me my water cup to wash them down; however, it was filled to the brim with ice-cold water. When the water splashed on my chest, I quickly gasped. Consequently, I started choking on the pills in my mouth. All the pills plus the water came spewing out of my mouth.

Later that night, my caregiver, found two pills stuck to my butt. She did ask me if I wanted to take them.

ALS Lesson: In this case, the cup DOES need to be half-filled.

Blood Draw Blunder

As if having ALS isn’t enough of an inconvenience, I had to have a blood draw at the end of a very long day of appointments. It was closing in on 5:00 pm and the lab waiting room was empty. The lone technician called my name and I rolled back to the cubicle. After tying the elastic around my arm and feeling for the vein, the technician came at me with the needle. Just as she was ready to plunge the needle in my vein, her boobs hit the joystick on my power chair and lurched me sideways.

ALS Lesson: Remember to turn your chair off to avoid awkward and painful situations.

Good Things About ALS

• You don’t have to have a colonoscopy.
• You don’t have to wear a bra.
• You don’t have to have dental implants.
• You don’t have to have a mammogram.
• When someone calls to ask you if you can serve on a committee, you can say no, guilt-free.
• You don’t have to cook, do dishes, fold laundry…because you can’t move.
• Even if you can still talk, you can pretend you can’t. No one will know the difference.
• You can’t get a speeding ticket since you can’t move your arms or feet to operate a vehicle.
• You don’t have to mow the lawn, take out the garbage, or clean the garage.

Change Your Perspective

I am truly learning to change my perspective so I can still find joy in living.

• I can’t play the piano anymore, but I can still listen to great music.
• I can’t walk anymore, but I can still get around in my power wheelchair.
• I can’t feed myself anymore, but I can still enjoy great food.
• I can’t drive anymore, but I can still be a passenger and go places.
• I can’t do my hair anymore, but I can wear a cap to cover it up.
• I can’t type anymore, but I can make others type my dirty work for me.
• I can’t hold my cards anymore, but I can still play games using cardholders.
• I can’t drive my pontoon anymore but with the help of others, I can still be on the lake.
• I can’t travel alone anymore, but can still travel with my “posse” supporting me.

Wisconsin Rest Stop

When I travel, I have to be very strategic on planning my bathroom stops. Jim was my only traveling partner and we stopped at a rest stop in Wisconsin, on our way home from Door County.

I was in my power wheelchair and Jim was following with the sit-to-stand and the sling. I thought it was a good omen that there was a handicap button to open the door to the rest stop. Little did I know that there was still not room in any stall, including the handicap stall for me, the sit-to-stand, and my husband.

I had been holding it for six hours and was not happy. Jim went out to the van to bring the commode in and while he was digging it out from the bottom of all our gear…everything in the back of the van fell out all over the parking lot. Meanwhile, I am waiting inside squeezing my legs together, wondering what could be taking him so long. He finally arrived and brought the commode into the women’s restroom. However, he decided he needed to go to the bathroom more than me (even though he went at the restaurant and gas station before we left).

Do you know how hard it is to hold it when your husband is loudly peeing in the stall next to you? When he finally came out to help me we still had to get the sling on before I could go to the sit-to-stand, back up the wheelchair, and put the commode in place. Luckily, I made it in time.

ALS Lesson: Be strategic in our packing. Put the commode on top, so you can access it in a hurry.

S**t Show (Literally)

I had a humiliating and emotionally exhausting situation that arose at one of my appointments. After our two-hour drive and the first few visits from specialists at the MDC, I needed to use the restroom. Because of my mobility issues, I use a sit-to-stand in my home and when I travel. The sit-to-stand model used in the MDC is quite different from the more efficient one that I use at home. It took a long time and much discussion for the three CNAs helping me to figure out how to safely use the machine to move me from my wheelchair to the toilet. This did not instill confidence in me!

While the experts were figuring out how to proceed, my bathroom needs became more and more urgent. I explained the lack of range of motion that I have in my shoulders and the pain that is caused when my arms are lifted too high. The only way the sit-to-stand could get me out of my chair was to raise my arms to a level that was quite painful. Then the CNAs still had to get me through the narrow bathroom doorway into the supposedly handicapped-accessible restroom. The doorway was so narrow that my skin caught on the door frame and ripped open. It began to bleed all over. The toilet was not a raised toilet like you would expect in a handicapped-accessible bathroom which caused me even more pain.

By now the urgency was extreme. When they finally got me to the toilet, it was too late. Because it took so long and I just couldn’t hold it anymore I soiled my pants. I was hoping that they could just cut my underwear away and that everything would be contained inside my underwear. However, no one could find scissors, nor a band-aid for my bleeding hand, When they finally brought the scissors, my daughter cut the underwear away but because the toilet was so close to the wall and she was squeezed between the toilet and the wall, she accidentally hit the lever and flushed my underwear down the toilet (you can’t make this s**t up)!

We had to go to plan B to get me off of the toilet since the sit-to-stand was not an option due to the pain. This required the use of a gait belt but since the toilet was so close to the wall, it made it impossible for someone to be on both sides of me and in the front of me. A transfer board wouldn’t work since the toilet was so low and my wheelchair was so high and no one seemed to even know about a disc that helps people pivot while standing. I finally got wrestled back into my wheelchair and I was given a sheet to cover me since I had soiled my pants. I was taken to a room with a Hoyer lift where they helped me clean up.

So many medical facilities have totally unacceptable bathroom facilities for someone with my stage of the disease. I cannot be the only handicapped person that needs to have a bathroom big enough for a sit-to-stand, a power wheelchair, and a raised toilet far enough from the wall allowing caregivers to be on either side of me along with an extra wide doorway.

While everyone involved was respectful, compassionate, and caring, I still was embarrassed and very angry as I am trying to maintain as much independence as possible. I had so many people telling me they were sorry, but nobody was sorrier than me.

ALS Lesson: Sorry doesn’t fix the problem.

MDC

I have been dealing with ALS since January, 2023 and have been attending the Multidisciplinary Clinic (MDC) at UW Madison every few months since then. I have been very impressed with the communication, care, and compassion shown to me by everyone involved from the CNAs to the neurologists.

At the MDC, patients check into an examination room where they see all nine specialists, one after the other, without having to leave the room. This saves a tremendous amount of energy but is also physically and emotionally exhausting. The Neurologist, Palliative Care position, Communications Specialist, Occupational Therapist, Physical Therapist, Respiratory Therapist, Social Worker, Swallowing Specialist, Clinical Nutritionist, and Genetic Counselor all make appearances during this MDC visit.

It can be overwhelming, but it helps to have each specialist’s name listed and a place for us to take notes. We try to take a third person along for note-taking purposes so my husband and I can concentrate on the discussion during each visit. We also have found it helpful to submit our questions before the visit so everyone involved knows the challenges and issues we are facing as this disease progresses.

ALS Lesson: It takes a village to manage this disease.

Q&A for ALS

These are actual questions that I’ve been asked. While I believe people mean well and truly care, as my disease progresses, I find my “Window of Tolerance” is closing and sometimes is actually slammed shut. I didn’t actually verbalize these answers, but I was thinking them!

• What stage are you in? When I’m dead I’ll be in the end stage.
• Have you tried pickle juice? There is no scientific research or clinical studies to support the effectiveness of such idiotic cures.
• Have you lost your faith in God? My faith in God is what is seeing me through the progression of this disease.
• Are you sure it’s ALS? Let’s see, after 7 falls, 6 months of appointments, 5 MRI’s, 4 EMG’s, 3 neurology consults, 2 opinions from UW Madison and Mayo Clinic, and 1 body that doesn’t work. I’m pretty sure it is ALS.
• Can I come and see you? Depends on if you are being nosy or if you really care. In other words, if you haven’t talked to me in over a year – don’t bother coming.
• I’m so, so sorry. Sorry doesn’t fix it. No one is sorrier than me.
• What is your life expectancy? Longer than yours if you keep asking such stupid questions.
• Are you mad? You’re d**n right I am!
• How do you handle your anger? I throw screwdrivers as hard as I can against the wall. (Doug Purdy)

Higher Than a Kite

After several sleepless nights, I was exhausted. To top it off, the Guardian Angel that we pay to stay two nights a week canceled due to a family emergency. My son came to sleep with me at the last minute.

At 2:00 am, I was still tossing and turning and neither Josh nor I were getting any sleep. He said, “Mom, I have something that can help you”. He gave me a small chocolate bar laced with marijuana. I was willing to try anything to get some sleep, so I took it. Nothing happened. After another hour of tossing and him turning me, he gave me another bar.

My caregiver came in the morning to help me shower, and it always takes me a while to get going in the morning. As I was sitting on the shower chair, the whole room seemed to be spinning and I couldn’t sit up straight and ended up having to lean against the shower wall. I told my caregiver to go get my husband and she replied, “I can’t leave you here, you can’t even sit up!“

When my husband came in from chores, they got me back in bed and I told him to cancel my PT appointment, which I usually look forward to. I went back to sleep for 4 more hours and woke up hungry for Doritos – but feeling better.

ALS Lesson: Take it easy with “new” meds!

Laughter is the Best Medicine

My colleague is not a touchy-feely huggy kinda guy, but he found a great way to support me and boost my morale. Every few days he sends me a joke that never fails to make me chuckle…even on the worst days. Here are some of my favorites.

• I called animal control after finding a suitcase full of kittens in the road. They asked if they were moving… I said I don’t know, but that would explain the suitcase.
• My elderly obese parrot died. I’m really sad, but it’s a huge weight off my shoulders!
• The invisible man married the invisible woman and I am not sure what they saw in each other and their kids are nothing to look at either.
• Sometimes I read a text and think “this guy is nuts” and then I hit send.
• I asked the pharmacy clerk if they had shampoo and he said “aisle four.” I said my wife needs extra volume so he shouted “AISLE FOUR!”
• Did you know we eat more bananas than monkeys? Probably because monkeys don’t taste very good.
• The nurse handed me a cup and said “urinate” and I said “thanks, my wife thinks I am only a four’.
• Did you know that Jesus was going to be named Frank, until Mary stubbed her toe on the way to the manger?
• I heard that the key to building relationships is to ask personal questions…I tried it today, but apparently “What the h**l is your problem” is not what they were talking about.
• What did the elephant say to the naked man? “Cute… but can you pick up peanuts with it?”
• Maybe the best yet: “God invented childbirth so women could experience what it’s like when men get a cold.”

ALS Lesson: Laughter is good medicine.

Blue Butterflies

I am blessed to have six special “sisters” that have gone above and beyond to help me with every step of this journey. Amy Jo, Carol, Deb, Jolene, Shauna and Vicky have helped me travel, sleep with me to turn me over, and take care of all my needs. They made sure that I got to Kansas City twice to see my 91-year-old Dad and played Bingo and cards with him. They’ve cried with me and wiped my tears (and my butt!) and made all the challenges of this disease more doable. I love them.

I’ve always thought of butterflies as representing new life and these women share my faith and belief in heaven. I couldn’t think of anything to give them because all of us are at the stage in life where we are getting rid of stuff (and our kids don’t want it). My daughter-in-law suggested a piece of jewelry so after searching online she found a beautiful Pandora blue butterfly necklace. It was perfect. Subtle, small, and hopefully when they see each other wearing it, they will remember me and the strong connection we “sisters” have had for over thirty years.

ALS Lesson: You don’t have to be related to be family!

Battery Level

It was explained to me that we all have a battery that needs to be recharged. A person with ALS has a battery one-fifth the normal size and it depletes more rapidly. This was a very difficult lesson for me to learn and even more difficult for those around me. I was used to doing pretty much anything I wanted as often as I wanted and as long as I wanted. With ALS, if you have a “big day” planned, you have to take a day or two before the event and even a few days after the event to recharge your battery.

It’s important for the people around you to honor that request for periods of rest. A great help to me was when people asked the best time to come or made an appointment and didn’t surprise me with visits. It takes an ALS person a long time to get dressed and be ready for the day. So early morning is pretty much tied up with personal care and after that’s done, the battery needs to be recharged before going on with the rest of the day. Again, a difficult lesson for all of us… And this applies to caregivers as well.

ALS Lesson: Be sure to recharge your battery.