Does ALS Hurt?

 

Does ALS hurt, is one of the most commonly asked questions I receive. So, lets find out.

ALS damages and then kills the nerves that send messages to our muscles. For most people, that means a gradual weakening of the muscles and loss of strength.

 

Direct pain in ALS is not common. In other words, it does not hurt as the nerves begin to die. But it is important to be aware that pain can be caused by issues associated with the disease, such as lack of joint mobility and muscle cramping.

 

When looking at pain and ALS, it is important to understand that loss of functioning in the muscles and other body parts can have numerous effects.

 

Common issues experienced by ALS patients include:

 

• Joint pain because of lack of movement. Whilst ALS does not cause pain itself, lack of movement over a long period can have an impact on joint mobility and lead to discomfort.
• Muscle spasticity, cramping, twitching, and muscle contractions are not unusual in ALS, and this can also lead to pain because of cramping.
• Weakness in one area can also put stress on other muscle groups. ALS pain can result in muscles having to overcompensate for others who have lost their strength because of nerve degeneration.
• As nerve damage becomes more widespread, immobility can also lead to issues such as pressure sores.
• Constipation can also be an issue as the disease progresses and can be particularly uncomfortable for those with later-stage ALS.
  

 

Pain and discomfort generally become more prevalent as the disease progresses. Difficulty breathing can be challenging for patients, and medical interventions such as putting in a feeding tube can also cause secondary pain issues.

 

ALS affects everyone differently; thus, pain and discomfort are objective. As you learned from above, the actual biological process of nerve death does not hurt, but there is something this article failed to mention.

 

Let me start with my initial symptoms and work to the present day. One of my first symptoms was twitching in my right tricep, which was more annoying than painful. As my symptoms began to spread down my arms into my hands, I started to experience discomfort. The discomfort steamed from my muscles dying, atrophy, causing severe cramps in my forearms and hands.

 

The sensation felt like I wrote Moby Dick by hand. In addition to forearm cramps, I was experiencing cramps in the meaty part of my thumb. The muscle atrophied to the bone. The next symptom I experienced caused extreme discomfort to the point where I would throw up. I would experience severe cramps under my chin down to my throat. I would yawn, and my throat would spasm. The discomfort felt like a knife stabbing me in my throat. I would try to clear my throat, but the only thing that soothed the discomfort was to puke.

 

As ALS slowly ravaged my upper body, my legs remained untouched until late 2017. I started to notice a consistent cramp in my right calf, and my balance was the first symptom to cause concern. Over the next three years, I would have twenty-two falls in or around my house. Out of those falls, I ended up with two broken bones and a grade 3 concussion.

 

The first fall happened a few days after Christmas 2017. Erika gave me a custom fire pit with my last name, Poling, cut into the sides. I was on my back porch burning Christmas boxes when I was blinded by the flames. I accidentally stepped off the side of the porch, and I fell to the ground. I did not get my hands out to break my fall. I landed on my right shoulder. I knew something was wrong, and I was right. I broke my right clavicle.

 

I recovered from my first fall just in time for my first childs birth in April 2018, I was having trouble using my arms and hands, which made being a new father extremely difficult. I was downstairs with Liam, trying to let Erika rest. I decided to go to bed, so l carried Liam upstairs. I reached the fifth to last stair, and Liam started to slip from my trembling grasp. I freaked out and screamed for Erika. Mere seconds later, I slid down the stairs as Erika took Liam from me. Ugh, that was too close.

 

A few weeks later, I was getting ready to go to the Post Office with my hands full. I tried to open the door to my truck when my hand slipped off the door, and I fell straight into our flower bed. I heard the mail truck pulling up to our mailbox, so I tried to pop back up to save the embarrassment, but when I tried to get up, I fell again. I attempted to save face, but I face-planted in my muddy front yard right in front of my mailman. Thankfully, he helped me to my feet.

 

In my defense, my driveway is steep, but I fell a few weeks later doing the same thing. My next fall happened a few weeks later. I came downstairs with a basket full of laundry when I saw a nice whitetail buck outside my back window. I neglected to see Liam's bouncer in the middle of the floor. I smashed my toe off the bouncer, and down I went. I hit my head on the coffee table and landed on my right hand. I broke my wrist and thumb. 

 

Given my recent track record, I was careful not to fall again. Unfortunately, ALS had other plans. I fell again when I was standing to pee in my bathroom. I sneezed which caused me to fall backward and crush Liam in his walker. Thankfully, no one was hurt. I fell again a few weeks later during a transfer with my mom. We both hit the ground hard, but my mom broke my fall.

 

The next fall was the fall heard around West Virginia. A group of high school teammates, the Gauley River Boys 501c nonprofit, hosted an elimination dinner for me. Erika and I arrived in the parking lot and headed inside when I saw my favorite teacher from middle school. We embraced each other with a big hug. Upon releasing each other from the warm embrace, I felt my equilibrium shift, and I fell to the asphalt parking lot like a giant sequoia fell to the ax in the 1800s.

 

I remember falling and getting out E-R -I - K… before I smashed the back of my head. The lights went OUT. I was unconscious for a minute, but it felt like an hour. I woke up to an increasing number of onlookers. I heard the faint sounds of emergency services coming to my aid. I was so embarrassed, not because everyone saw me so vulnerable, but because I did not get to step foot in the event to see everyone there for me. 

 

EMS took me to St. Joseph Hospital, a half mile away. The Emergency Department feared a brain bleed, so they recommended I be transferred to Ruby Memorial Hospital, an hour away by EMS. I was nauseous, in a C-Collar, speech slurred before the fall, concussed, and trying not to puke in my oxygen mask. After four hours, ten hours after the fall, I was okay except for a Grade 3 concussion, two black eyes, and a small gash on the back of my head. 

 

It took a month for me to recover from the concussion, but my ALS relentlessly progressed. We learned a valuable lesson from that incident; I needed to put my stubborn attitude aside and use my power chair in public. My balance and the fear of unknown obstacles made the decision easy. However, it did not make the loss of independence less hurtful.

 

I had several minor falls over the next few months. Then something happened to me that changed my life as I knew it. I was working from home, as usual, except now I worked on the first floor since stairs were no longer an option. I stood up from our dining room table to see why my dog was barking. I sneezed and overcompensated causing me to stumble back into the table.

 

It was a relatively soft landing, so I tried to pop back up and continue my day. Okay, 3-2-1 roll over. Um, I can not roll over. What is going on? Let me try again. 3-2-1; nothing. Okay, I needed leverage to get up, so I pushed myself to the coffee table and couch. I rolled over and got to my knees in the fetal position, but my arms were so weak I could not get to my feet. I tried for an hour. After accepting defeat, I went into survival mode.

 

I needed to call for help. One problem my phone was on the armrest of my La-Z-Boy recliner on the opposite side of the house. I pushed myself on my back through two rooms, a hallway, and the kitchen to the living room. I kicked my phone off the armrest on the floor. My hands and arms were all but useless, so I unlocked and dialed Erika with my nose. She answered to hear me crying hysterically. 

She deciphered my gibberish, and her dad came to my rescue. Tim, my father-in-law, came inside and lifted me to my feet. We both cried because I lost my independence at that moment.

 

Erika installed cameras in every room to monitor me during the day. At the time, we only had a caregiver coming three days a week for a one-hour hygiene session. It was not long until the camera's paid off. 

 

A few weeks later, I sent Erika a text message saying I was getting up to pee; I lost my balance and fell. I was stuck on my back again. I pushed myself into the hallway from my bedroom towards my phone. Suddenly, I heard my angel say, Seth, are you okay? I am on my way home. Erika came home and got me up. I fell a few days later during a transfer with Erika, but I was so weak Erika could not get me up, even with the assistance of a transfer belt and bed sheet.

 

I forgot to mention Erika was eight months pregnant. Erika called her dad to come to help us. A few weeks later, I opened our sliding glass door to let my dog outside when my hand slipped off the door handle. I fell straight into the toy chest and hit my head on the corner. I laid on the floor for a while before Erika got home. Unfortunately, the camera disconnected, and we decided I needed supervision during the day when Erika was at work. I agreed to stay in my power chair 100% of the time I was out of bed. 

In addition to my twenty-three falls, I have had three life-extending surgeries. I had a intervenes port placed to receive a newly approved medical infusion. A few months later, I had a feeding tube placed since I could barely eat by mouth. Those surgeries caused mild discomfort, but nothing could compare to my looming surgery.

 

I had a tracheostomy in August 2021. It was the hardest thing I have ever experienced in my life. The actual surgery was relatively easy, but the recovery took four-plus months. I compare the recovery to the feeling of a boat motor sound underwater. I went from compromised breathing to breathing through a straw with water inside. I constantly battled excessive secretions for a year. That surgery hurt and almost broke my spirit.

 

So, does ALS hurt?

 

As stated above, the process of neurological death does not hurt. Twitching head to toe does not hurt. Muscle spasms and cramps hurt. Falling twenty-two times at home and once in public hurts. Three life-extending surgeries, two broken bones, a few near misses with a newborn, and one severe concussion hurts. So, yes, ALS hurts f@%$ing bad. It hurts physically, mentally, and emotionally. It hurts family and friends, and it can happen to anyone at any time.