Category: living with ALS Page 1 of 2

In the series finale of The Crown, the Duke of Edinburgh is gleefully planning his own funeral. Since I planned my funeral a couple of years ago, I related to his glee. My funeral will have none of the pageantry that was in the Duke’s funeral, thank goodness, but there is something very gratifying about taking care of this final act and sparing my loved ones from the decision making and the expense during their grief. 

When my friend Roberta was planning her mother’s memorial service, and struggling with her siblings to agree on the time and place, I told her that I had already planned my funeral. She said, “I love that idea!” And with that Roberta and her husband got started planning their memorial services. 

I’m sure that I would not have planned my funeral in mid life if I didn’t have a terminal illness. It’s just like making a will. Few people do it before they reach their golden years. But as my friend Lisa Booth, a stage four cancer survivor, said when I asked her for advice about telling my kids that I have a terminal illness, “all we really have is today.” Every time I hear about a fatal car accident or a mass shooting, I hear her words. 

While the Duke was enthusiastic about planning his funeral, Queen Elizabeth felt the opposite about planning hers. She told the Duke to stop talking about it because, “it’s too sad.” I don’t know if that feeling is what stops more people from doing estate planning, but I would argue that for those of us who are not royalty, failing to do so will be much sadder for those we leave behind. 

I recommend the site Get Your Shit Together –  for advice on what to gather in the event of your death to make it as easy as possible for your loved ones.The woman who created the website, her husband died in a bicycle accident and had not prepared for this eventually. She‘s a reluctant  expert. 

Blessings.

At one of my first ALS support group meetings, our host, Carl, said, “When you have ALS, your address book changes. You learn who your true friends are.” That has not been my experience. All of my friends have remained steadfast. They visit often, although Covid, off and on, has disrupted my willingness to have visitors. They stay in touch by email, and the local ones eagerly volunteer to help when I put out a call. Moreover, my friends treat me exactly the same as they did before I lost my ability to speak and move. I am very lucky. 

I have been lucky in other ways. One of the first things I did after I got my ALS diagnosis, was start looking for a new house. We were living in a three-story townhouse, and I knew it was a race against time before I could no longer climb stairs. I wanted to buy a single-story house with four bedrooms and two bathrooms, within walking distance to the boys’ schools. It was a very tall order.

After looking for nine months, I found the ideal house. While I still had the option to back out, my realtor, Tara Farquhar, advised me to meet the neighbors on either side, “in case they turn[ed] out to be crazy.” 

On an evening in late July, I ventured to my future neighborhood. After meeting Sandra and Jeff to the south, and Chiara and Nate to the north, I felt like I had won the neighbor jackpot. Not only did they welcome me enthusiastically, each couple also invited the boys and me to the upcoming annual neighborhood night out. I said a silent thank you to Tara for urging me to introduce myself to the neighbors.

Shortly after we moved in, I wrote to Sandra, Jeff, Nate and Chiara about my ALS. They responded with warmth and offers of help. After I stopped working, I needed help making phone calls and filling out forms. Sandra, who was retired, often came over to help me with those tasks. Having worked in the insurance industry for many years, she was especially helpful when we called my auto insurance company about my policy. She was (and still is) my go-to person for all kinds of assistance. I distinctly remember texting Sandra when I couldn’t unscrew the cap on the soy milk container, back when I was still eating, but my hands were very weak. She came right over.

Sandra’s husband, Jeff, has been my unofficial electrician. He replaced a lighting fixture for me, down to the wiring. When the power went out in my bathroom, Jeff diagnosed the problem and replaced the faulty outlet. In addition to his electrical prowess, he used to be a professional bicycle mechanic, and has all the necessary equipment. Last spring he gave the boys’ bikes full tune ups. 

After I told my neighbors about my ALS, Sandra shared the news with Julia and Joe, who live across the street from her. Julia, whom I hadn’t met yet, also wanted to help me. Before long, Julia became one of my volunteer caregivers. She got me out of bed on Thursday and Saturday afternoons, took me to the bathroom, and gave me my formula through my feeding tube, all while we had a wonderful visit together. This went on for many months, with Sandra joining in when transferring me became more challenging.

Joe, Julia’s husband, has offered to read to me. I have not taken him up on it yet, because of time. I have taken him up on his annual art sale. Joe is an avid photographer and painter. Each December, he has a show of his work, and asks the buyers to donate the money to a hunger relief organization instead of paying him. Since their house is not accessible to me in my power chair, Joe and Julia brought the art to me for a private showing.

When we had a powerful windstorm a couple of years ago, a section of my fence blew over. Chiara and Nate noticed, and propped it up so well that it has withstood subsequent windstorms. On another occasion, I heard what sounded like someone on the roof. When I looked out the living room window, I saw Nate climbing down a ladder from my roof, holding his leaf blower. He told me that he was cleaning my roof and gutters before the rains came. 

Whenever I think of my great good fortune with friends and neighbors, I recall the parable of the man in the flood. There are many versions of the parable. I will quote the one from the “Take this Sabbath Day” episode of The West Wing, since it’s where I first heard the parable. In this scene, Father Thomas Kavanagh speaks to President Bartlett:

You remind me of the man that lived by the river. He heard a radio report that the river was going to rush up and flood the town, and that all the residents should evacuate their homes. But the man said, “I’m religious. I pray. God loves me. God will save me.” The waters rose up. A guy in a rowboat came along and he shouted, “Hey, hey you, you in there. The town is flooding. Let me take you to safety.” But the man shouted back, “I’m religious. I pray. God loves me. God will save me.” A helicopter was hovering overhead and a guy with a megaphone shouted, “Hey you, you down there. The town is flooding. Let me drop this ladder and I’ll take you to safety.” But the man shouted back that he was religious, that he prayed, that God loved him and that God will take him to safety. Well… the man drowned. And standing at the gates of St. Peter he demanded an audience with God. “Lord,” he said, “I’m a religious man, I pray, I thought you loved me. Why did this happen?” God said, “I sent you a radio report, a helicopter and a guy in a rowboat. What the hell are you doing here?”

ALS is the most tragic thing that has happened to me, but I don’t ask God why it happened. Instead, I thank God every day for sending me the many, many people who have made having ALS easier, including Sandra and Jeff, Julia and Joe, and Chiara and Nate. 

One of the things I noticed while consulting other blogs about living with ALS, is that other bloggers include information about their diagnosis process. Thus inspired, here is my ALS origin story:

One morning during the third week of June, 2017, I was standing in my kitchen. I took a pen from the cup next to the phone. As I prepared to write my to do list, I noticed that the pen felt odd in my fingers. I couldn’t get a proper grip on it. One thought flashed through my mind: “I hope I don’t have ALS or MS.”

Multiple Sclerosis is a disease many people know something about. I’ve known people with MS, and of course there’s my favorite president, Jed Bartlett of The West Wing, who had MS, so it’s easy to understand why I would think of MS.

ALS is more obscure. Three experiences put it on my radar. One was a person I knew in high school, who would shout, “Lou Gehrig’s Disease!” anytime someone dropped something. It was insensitive, to be sure, but I credit it with my early awareness of the disease and some of its symptoms. The second experience was during a car ride with some colleagues fifteen years ago. We were going to a funeral, and one of my colleagues shared that her sister had died from ALS. That was the closest I had been to ALS, and, for some reason, her comment stayed with me. The third experience was reading an article in my alumni magazine around twelve years ago about an alumna with ALS. I have never forgotten the woman’s story. All three experiences primed me to link my suddenly weak fingers with ALS.

The weakness in my fingers persisted over the next few weeks, and I started to notice weakness in my right hand. I dropped things with no warning: keys, cartons of milk, yogurt containers. The cordless drill I had used many times without trouble, was suddenly so heavy that I couldn’t hold it.

In early August I saw my primary care doctor for my annual physical. I asked her at what point I should be concerned about weaknesses in my right hand. I said, ” I want to make sure I don’t have ALS or MS.”

She manually tested the strength in my hands, arms, and legs, and she checked my reflexes. She saw that my right hand was quite weak, and my right arm was hyper-reflexive. She referred me to a neurologist. 

I can’t emphasize strongly enough how lucky I was that my doctor took me seriously and that she knew what to look for. I have heard nightmares from and about other pALS whose doctors dismissed their symptoms as nothing or as normal signs of aging, or who misdiagnosed them completely.

Before I saw the neurologist, I had an MRI of my brain, which ruled out MS. Then the neurologist sent me for an MRI of my neck. The hope was that a bulging disc was pinching the nerves that controlled my hand and arm. The MRI revealed a bulging disc, but not one that would affect those nerves.

The next step was an EMG, a test that involved inserting needles into my hand and arm muscles to check their health and the health of the nerves that control them. The EMG results showed that there was a problem, but could not identify the cause. The hope at that point was that there was something physically blocking the nerves, such as a tumor. Back for a third MRI, this time of my shoulder. You know things are bad when you’re hoping for a tumor.

No blockage.

By this time, early October, I had decided to change neurologists. The one I had been seeing didn’t specialize in ALS, and more importantly, he was a jerk. I had been doing some research on the newly FDA-approved ALS drug, Radicava, and through my research, I came upon a video about Dr. E, a neurologist in my area who had a multidisciplinary ALS clinic. Dr. E came across in the video as not only knowledgeable, but also as incredibly caring and respectful of his patients. I knew that if I had ALS, I wanted Dr. E to be my neurologist.

My dear friend, Ellen, came with me to my final appointment with the first neurologist. He told us that while he thought it was ALS, he wanted to send me to someone with more expertise. I asked, “Is it Dr. E?”

“Yes.”

“Great.”

Ellen and I couldn’t get out of that office fast enough. Always one to take action, Ellen tried calling Dr. E’s office immediately from the parking lot. When she couldn’t get through to the scheduler, Ellen insisted that we drive across town to Dr. E’s office to try in person. As soon as we were in the building lobby, Dr. E’s scheduler called. They had a cancelation and could get me in the following week.

Dr. E wanted to repeat the EMG himself, and, since the only way to diagnose ALS is to eliminate all other diseases that can mimic the symptoms, he ordered a host of blood tests. (My sister Sephrah would later joke that we should make “I wish it were syphilis” t-shirts. Syphilis is treatable.) As we neared the end of the appointment, I said to Dr. E, “I don’t want to hear, ‘two-and-half to five years.'”

“No one should ever tell you that,” he replied. “ALS affects everyone differently.”

Ellen was with me at that first appointment, and when Dr. E left the room, Ellen and I turned to each other and both said, “I love him!” Dr. E makes having ALS just a little bit better.

On October 25, 2017, Dr. E officially diagnosed me with ALS. To go from symptom onset to definitive diagnosis in four months is unusual in the ALS world. In that, I know I’m lucky, but I’m still waiting for my super power.