June 2022 to July 2023 to present

ALS with Anna Vol. 9

I think we need to start with a little background on ALS and to give you a simple explanation of how ALS affects the body. [ALS affects the upper motor neurons, which are in the brain, and the lower motor neurons, which are in the spinal cord and brainstem. Upper motor neuron degeneration generally causes spasticity (tightness in a muscle), slowness of movement, poor balance and incoordination, while lower motor neuron degeneration causes muscle weakness, muscle atrophy (shrinkage of muscles) and twitching (fasciculations). These can occur in combination in ALS, as upper and lower motor neurons are affected at the same time.] I found this explanation here. I highly encourage you to read the whole article. It gives a great explanation in an easy to understand language. I found all the information to be correct.

I was diagnosed June 24th 2022. I feel like I went from barely knowing I had symptoms to noticing new symptoms daily. First symptom was feeling completely drained all the time. Then I noticed my muscles twitching by July. I was in the denial phase at this time, so every twitch was like a death sentence to me. I tried so hard to will them away and pray them away, but they kept coming. They started in my stomach first. They felt like gas bubbles at first, or if you have ever been pregnant it felt like the first movements in your stomach you felt. Then I realized what they really were. Next I felt them in my upper arms. 

By the end of July I had fallen twice because of foot drop. I tripped over the vacuum cord once. It happened so fast you couldn’t do anything to stop it. The second fall was while I was using my cordless floor vacuum. I turned around and my upper body moved, but my feet didn’t and down I went. Needless to say I was bad from the vacuum after that. Jason found out he actually enjoys vacuuming. I know he was weird. Lol. 

I also went back to work at the end of July. I was looking forward to the new school year, but it was also bitter sweet. I wouldn’t have my own classroom, but I knew it was best. Unfortunately, my progression went very fast my first year after diagnosis. When the new year started I couldn’t make it from the parking lot to the building. I was fortunate that I could park about 10 yards from the side door. I was walking slowly By August. I couldn’t go to lunch with the kids because it wore me out. By mid August I had to use a cane to walk with because another symptom had kicked in.  Another symptom of ALS is your equilibrium is out of whack. Do you like my PHD quality word usage there? Just keeping it real. So I became unsteady on my feet. 

My biggest fear was falling at school. I didn’t want to put that trauma on my kids. I never did. I was extra cautious at school.That year I had moved up to 8th grade with my kids I had taught in 7th grade the prior. We were very close and they could tell something was going on.They could definitely tell by September something was going on. If they asked, which they did,  I told them I had a muscle disease. I left my expectation of my symptoms at that. I didn’t want to give them too much information, but I wasn’t going to pretend nothing was wrong either.  My kids were great though.

 By September I had to use my rolling cart to get around the school. It was a three tiered cart. That the projectors use to sit on. Only us vintage folks know about that from back “in the day”.. It had a dual purpose for me. I was a co-teacher, so I moved between classes each day. I would set my computer up top, and had it set up like a rolling desk. I also used it to keep me stable. I was careful in the hallway. I either moved before or after classes changed  and I used the cart as a barrier between and 120 something rambunctious 8th graders.

In September we had to have a ramp and porch built at home because I could barely make it up and down the steps in the house. I also had to have help getting the kids in and out of the car. When I would get to daycare the teachers would get the boys for me. That was a huge help. That allowed me to continue to work and maintain some of my independence. My stability had become increasingly off balance. By the end of September I didn’t walk far without my rollator. A little misstep would send me to the ground. 

By October, while at work,  I had to use my  cart  to get from my car to the school building. My cane was no longer stable enough for me. My wonderful co-workers made it possible. If it wasn’t for them I would not have been able to stay at work as long as I did. I probably pushed myself too long, but I DID NOT want to give up teaching. I would still be there if I could.  My left hand had also started to really decline at this point. I could also tell my handwriting, in my right hand, was becoming affected. It became difficult to write notes. I had to write very slowly and practiced.

In October I had to stop going to town alone if I had to get out and go into a store. I still did Walmart pick up, Tractor Supply pick up, and weekly car washes. I just couldn’t walk unassisted or for long. I started using the motorized buggy when we went shopping. I also attended my first ALS clinic at Mayo. It was a great experience, but very emotional. They gave us  a bunch of resources, suggestions for equipment and devices that would be helpful. We left feeling very overwhelmed, but supported.

By November Jason had to help me get ready for work in the morning. I kept pushing along though. My hand strength was becoming extremely weak. I couldn’t hold anything with my left hand. Pulling on and off my pants became much more difficult,  and I could no longer wear tight elastic pants. Like my pull on pants or jeans, yoga pants, or anything with a button were out of the question unless I had help. I still wore them if I was with Jason or my mom, but only if I had help. I also noticed a change in my ability to talk out loud to the classroom. I would get short of breath when trying to broadcast my voice and talk for long periods of time. It would wear me out.

I also got my power wheelchair chair in November. This gave me so much independence again. I could get out in the yard with the kids again. I could drive wherever I wanted to go. I didn’t have to ask to be pushed anywhere because walking outside was too dangerous. I was too likely to fall even with my rollator because of my foot drop and instability. I used my power chair to go everywhere: walks with the kids, out the pasture to see the cows and goats, down to my mom’s house. I enjoyed having it finally.

By December my goal was to make it to Christmas Break, and I did! Whoop Whoop! Go Me! December was a hard month though. I was exhausted. I remember going into my room for lunch and just laying my head on my desk, I was so tired. I wasn’t able to walk very far without my legs feeling weak and shaking. I would even let my friends at work push me on my rollator if I was too tired or we had a meeting at the other end of the building. Talking about all of this now it seems crazy that I was still at work, but I refused to give up. 

Use it or lose it kicked in hard over Christmas break. I was in a fight with my own body. A fight I knew I could not win, but I was going down swingin. By the first of the year when I tried to go back for pre-planning  I had to pull right up to the door. I couldn’t walk at all without my walker, and I got winded walking down the hallway. By this point it wasn’t safe for me to continue. I couldn’t even make it all day. 

I had an ALS clinic the day after our planning day. When I told my physical therapy doctor I was still working and driving she said absolutely not. So my last day of work had finally come. I knew it was what was best for me,  but it was still a hard pill to swallow. I loved driving too, and given that up was also hard.  It’s one thing I miss so much. I used to love road trips while listening to my audio books. Now that was my therapy. 

I also started taking a new medicine after my January clinic. I started an antidepressant for my pseudobulbar affect which is the inability to control laughing, crying, and even yawning. I had all three. Which is very aggravating, not being able to control your own emotions. The doctor and my mom thought I had a touch of depression. I kept telling them I wasn’t, but the doctor wanted to try the antidepressant first. I gave it well over a month and by mid February I felt no different. So I contacted the doctor and he gave me Nuedexta. That medicine has been life changing. I could control my emotions A LOT better. Now I still smile at times I shouldn’t, but that’s just a side effect of als. More on that later.  

My progression went downhill very quickly after January. I lost some of my drive to fight so hard after not being able to work anymore. I was also tired of fighting for my independence so hard. So I easily let others do more for me. If you don’t use it you lose it. The first big thing was losing the ability to go to the bathroom myself because I didn’t have the hand strength anymore. My leg weakness and balance made using the restroom solo not safe. So at this point I couldn’t be left alone. When Jason went to work at the livestock sale my mom had to come sit with me. Jason didn’t want me getting up and walking around when someone wasn’t next to me, for fear I would lose balance and fall.  My last fall had been in October and we were very cautious.  

 By march I could no longer hold on to my rollator to walk around the house.  My left hand was completely non-functioning.  I had to sit on it and have Jason push me around the house. I could no longer walk unassisted.  My right hand has become too weak to write. I could sign my name but that was about it.  I could still hold my phone, take pictures, but I had to use voice to text to text or post anything. My fine motor skills were no longer. I could no longer broadcast my voice, my diaphragm was getting weaker.  I could only walk if Jason held me up. Which we tried to do often so I wouldn’t lose the muscle or the ability. I just didn’t have the upper body strength or the stability anymore.

It is kinda weird that my symptoms started in my legs, but they have lasted longer than my arms and my voice. I can still move my legs, but I can barely move my arms at all. 5/24 (present day)

March is when I had my first panic attack. I could no longer get out of my chair anymore. I also could not get in or out of bed by myself. So I started to feel trapped when I was left alone. I would know Jason was outside and coming right back, but if I dropped my phone or the chair remote I would panic. I had major anxiety about laying down in bed alone. One night I went to sleep and Jason stayed up watching TV. I woke up and couldn’t hear him. I called for him and he did not answer. I flipped out! Jason had walked outside because the dogs were barking. He wasn’t gone for 5 minutes, but I was in a full blown panic mood. I knew he had not left me, but I couldn’t control the feeling of helplessness and panic.If you have never had a panic attack it feels like you are suffocating and your heart is going to explode at the same time. Once I almost passed out because I couldn’t control my breathing. 10 out of 10 don’t recommend it.

I have always wanted to go on a cruise. So we booked it for April for our anniversary. I was in my power chair completely by this point, but we had a great time. I loved all the food. Unfortunately, I wasn’t able to get in the water, but we got off the boat and enjoyed everything we could. It was during this trip we realized I was not really able to feed myself effectively any more. I couldn’t get my hand up to my mouth. I could also tell my energy levels were low. We only went to fine dining once. Every afternoon I was too tired to get all dressed up just for dinner. We also didn’t attend any shows. We were both too tired. The trip was great, but I realized I couldn’t hold out anymore. 

April is also around the time I lost the ability to hold my phone and take pictures. So all my snap chats were either of nothing or Jason took it for me. I could pick my phone up, but only to set it on my lap. If it fell to my left side, while I was in my chair, I couldn’t reach it. This is when my panic attacks would happen if I was in the house alone. I did learn to control them. I would distract myself with the TV until Jason got back. 

When I went to my ALS clinic in April my doctor had said all my numbers looked stable and I was at a plateau. Meaning I wasn’t progressing at the moment. He explained that I would have times of progression and times of plateau. Doctors and scientists can’t figure out why this happens.

All was well and good until I ran out of my Nuedexta prescription in June. It happened on a Friday. I called Saturday. They didn’t have a refill. So I had to wait monday. Then they had to order it. Apparently, it’s a $1,500 dollar prescription. So they didn’t order it until they got the prescription. Long story short, I went 5 days without it. If you remember, it helps stabilize my emotions. Well being without it for that long I felt like I was dying. My voice started to change. I started to feel like I was losing the ability to talk, I was extra panicked, and it was like all my symptoms were getting worse. Once I finally got it back in my system I was okay, but that was the turning point in the decline of my speech. It scared us so much that we scheduled an early ALS clinic in July. I wanted to be seen. I felt like I was progressing too fast. 

In July at my clinic they could tell I had changed since April. I was starting to have more swallowing issues. My speech was hard to understand. This is when we started the process for getting my Tobii. It is the best invention in the world for me. It is the reason I am able to do this blog right now.  Its medical purpose is for speech and also the ability to drive my power chair with my eyes. Because by July it was very difficult for me to control my wheelchair with my right hand, I couldn’t extend my arm enough to reach the control and I couldn’t hold on to the joystick with my hand.

I basically went from walking and going to work in July of 2022 to being almost paralyzed and having difficulties talking within a year. My progression was fast. Sometimes it feels like it has taken me years to get here. I have to remember how fast I progressed that first year. Luckily my progression has slowed down. From July of 2023 to May of 2024. 

The major change has been my voice and being able to swallow. I got a feeding tube in March of 24 and that was the best decision I ever made. Jason and those who are around a lot can still understand me for the most part. I use my Tobii for big sentences, but for common statements like I’m hot or I need the bathroom Jason and my caregiver can understand. I’m using my Tobii more and more for communication.  I still drink my coffee every morning, but I’m using my feeding tube for my primary food source. I eat one or two meals a week by mouth. Now I still love my sweets as long as they are soft like pie, cobbler, and dump cake. I can still eat foods of that consistency.  

I also sleep more now and get tired quickly. All and all I’m still doing good. I know it sounds like I’ve lost a lot, but I still have a lot of life left in me. I’m going to watch Brody graduate from PreK this week. We have a family beach trip planned this summer too. If you follow me on Facebook you know I’m still growing my farm with rabbits, goats, chickens, and turkeys daily. I couldn’t have made it this far without God and Jason by my side. My kids keep me going too! I’m lucky overall I have a great support system. I’m very grateful for all the people and things I do have. Life is too short to be sad and grudgeful. Be grateful for what you do have. It could be gone in an instant.

This was a long one. If you stayed with me this long, thank you. It took me about two weeks from start to publishing. I appreciate all of your support and prayers. 

~He has a plan and I have a purpose~

• ALS with Anna