I woke up in the middle of the night and immediately the sense of panic I live with every day set in. My chest tightened and I my mind started searching for ways to regain control over my emotions. Usually, I can focus on my own breathing but lately, I listen to Ben breathing and focus on how grateful I am that he chose me to be his wife. I am so lucky he is my best friend. And I am desperate to save him.
Most days I am able to hide that desperation just under the surface. I am strong for my kids and focused on taking care of what needs to be done for my family. I don’t think this is unlike any wife or mother who has found herself waging war against a disease that threatens to take her loved one. In the quiet of night when I don’t risk being seen or heard, I cry. Sometimes I curse. I plead and pray. I read books and I research. And in the morning, I go to work trying to fix “it”.
Amyotrophic Lateral Sclerosis (ALS) is also known as Lou Gherig’s disease and/or Motor Neuron disease. There is no cure and it is 100% fatal typically within just a few years. Symptoms include progressive muscle weakness, pain, slurred speech, and fatigue. Progression varies from person to person. For example, one may start having difficulty talking while another may experiences loss of strength in a hand or leg. Unlike cancer or other treatable diseases, there is not a simple blood test that tells you if you have it. Diagnosis can often take months to years depending on symptomology and progression. In our experience as well as hundreds of others we have encountered with ALS, getting diagnosed is often one of the most frustrating and expensive medical experiences they have ever had.
Many people have asked what type of symptoms Ben is experiencing so that they could better understand how he is being affected. Over the past few weeks, we have seen a rapid decline in functionality which is what propelled us to share our story. We were completely unprepared for the sudden changes. Many of Ben’s symptoms require active management while others require passive tolerance. These include:
- Muscle cramps: Initially, these would come and go in just his right arm or left leg. Right now, they seem to be mainly in his left hamstring, right forearm and shoulder. They are painful and unrelenting
- Fatigue: Feeling tired after sleeping for a full night is not uncommon. Initially, we thought that perhaps his CPAP wasn’t working but testing showed that he was getting good rest. Fatigue is exacerbated by any type of physical activity. Transferring from his power chair to the push chair or to the car, toilet, or shower take extraordinary amounts of energy.
- Muscles twitches: These happen all over, all the time. Yesterday, we got a good giggle out of watching his first and second toes doing a little dance with each other. These are not painful like the muscle cramps, but they can be a bit annoying.
- Fasciculations: According to ALS Today, “Fasciculations are caused by the tips of nerves (axons) coming into contact with nearby muscles, sending an electrical signal which causes the muscle to twitch. The sensation can be a one-off event or can continue sporadically for weeks or even months and in most cases will cease on its own. People living with ALS will often experience muscle twitching as the signal from the nerves to the muscles become more disrupted.”
- Foot drop and loss of function in the left leg: Ben’s left leg no longer functions like before. He thought it was just unstable at first but over the past few weeks, he has progressively struggled with dragging his toe (known as foot drop) and not being able to bear weight.
- Blood Clot: While not associated with ALS directly, sitting for long periods of time and not using a limb for an extended period can put you at risk for developing a blood clot. In addition to the clot, Ben has had some extraordinary swelling and discomfort. Fortunately, the clot is slowly starting to resolve with medication and it does not look like it will need to be removed surgically at this time. Phew!
- Reduced Stamina: This one is hard, especially when you have a gaggle of kids who want to do stuff with their dad. Most days, Ben’s battery is pretty worn out by the time he gets home from work. Our goal is to focus on quality instead of quantity so that we make the most of the times he is feeling up to family fun!
- Use of his hands: This was one of the first signs that something was wrong. He began to find tasks that required use of his hands painful and that they would tire easily. Changing a lightbulb, holding a steering wheel, opening a door, and flipping pancakes are examples of tasks that have all become close to impossible because they are excruciatingly painful. This has made addressing mobility more of a challenge, like using a walker, holding a cane, and using grab bars for getting up and down from the seated position or for stability in the shower. Ben is still able to type and use his phone because those are primarily finger based tasks versus engaging the forearm muscles.
So many of you have reached out to see how you can help. We are VERY GRATEFUL! Our needs are overwhelming and costly. We are putting together a list that we will post separately from this post that goes into more detail about those needs. We are humbled to know that we are not alone in this journey!
In the middle of all of these symptoms, we are trying to titrate medications, find holistic solutions, engage in physical therapy, surround ourselves with a team of doctors and specialists, and participate in counseling to help find balance in the chaos. And at night, when desperation sets in, I try to remember hope. We will find a cure. We will find solutions. Panic, fear, despair, and desperation will not win. We will rise!