Adam's ALS Story

Adam is the guy we all love. He is an all-around great guy. A son to Peni and Bake, brother to Shannon, nephew to Sandi and Charlie, a full member of the Merriman clan (including husband to me), a great friend and co-worker and a genuinely good person who can get along with everyone. If you were in the music business and interacted with BDS Radio, you know Adam.

In late summer 2019 I noticed Adam's speech was slightly slurred. We were in Palm Springs and drinking wine, so I assumed he had more than I realized. In those pre-pandemic days, Adam and I didn't spend much time together during the week, but on the weekends, I would notice the speech changes. So when he said he'd not been drinking, I was worried.

His doctor sent him to get an MRI and referred us to a neurologist. We were relieved to see no evidence of a stroke and no other neurological disease symptoms. No muscle weakness, no trips or falls, no uncontrollable crying or laughing. However, he has difficulty swallowing because of his Eosinophilic Esophagitis, so we wondered if it had worsened or morphed into something else.

The first neurologist didn't think we had anything to worry about, so we found a different doctor. The beginning of 2020 was an insane time for us. Someone ran a stop sign and smashed into us, totaling both cars. Three weeks later, on the day our new car was delivered, the shelter-in-place order was given in Los Angeles. Now I saw, up close, how much worse Adam was doing.

Daily he would have a choking incident where he would be gasping for air, and I would wonder if I would need to call 911. Had I not been so worried about Covid, I probably would have. And I started pushing Cedars Sinai neurology to see Adam in person. Finally, in May, they agreed.

Each test came back negative. At the time, I thought this was a good thing. We got some advice from a speech therapist, and he started working with one. He started working with a speech therapist. In late June A's case was re-evaluated by a new doctor at Cedar. They diagnosed him with Myasthenia Gravis (MG), a severe but treatable autoimmune disorder. I had never heard of the disease, but I looked it up, and he had all the symptoms. It's severe but can be managed. He started treatment. treatment.

Word got back to the first Cedars Neurologist. She did her board fellowship with a doctor considered one of the best MG doctors in the country. Dr. S. at UCLA. She didn't think A had MG, but if he did, this doctor was the one to see.

It took us a month to get the appointment. I knew it was not going well when Dr. S and his fellow kept leaving the room to confer. In conclusion, Dr. S told A he sees many men Adam's age, with Adam's symptoms, with Myasthenia Gravis. But, A didn't have MG. He had ALS.

We got a second opinion at the ALS clinic at Cedars Sinai. They concurred and explained that because ALS mimics other neurological diseases, our year-long and challenging path to this discovery is not uncommon. And because he has bulbar onset, he did not initially have the physical symptoms other types of ALS exhibit. The limb decline is limited, and he has some muscle strength and coordination. He still can type and write. However, the bulbar/respiratory issues are severe.

Two years in, he has profound muscle weakness in the jaw and throat. He is unable to communicate verbally and makes only minimal sounds. Nor can he chew and swallow, which means he received all nutrition through a feeding tube. He suctions out his mouth multiple times a day and uses a cough assist to assist him in coughing up mucus and fluid in his throat and chest.

People with bulbar onset also tend to decline more quickly than patients with limb or spinal onset, although his decline seems about average. It has impacted his lung function, and he cannot sleep or recline without a ventilator.

Adam also has a separate issue unrelated to his ALS. Technically, it's not the disease keeping him from walking but a severe plantar fasciitis flare-up in his left foot starting in March 2021 and he has been unable to walk normally on it since May of 2021.

There is no cure for ALS and little in the way of treatment options. Currently, Adam does not take the drugs approved for ALS, as he feels the side effects outweigh the benefit, and we focus on symptom management. Now Adam was admitted to Cedars Sinai with aspiration pneumonia. He has a hard time talking about himself, even when he did speak, and an even harder time asking for help, but he is going to need some additional support and treatment. We are fortunate to have insurance, but we still have co-pays and numerous out-of-pocket expenses. And, as he progresses, there is a lot of other care and treatment not covered by insurance that Adam will need to live a comfortable life.

We will use funds raised to pay for our insurance co-pays and this hospital stay and provide services, including caregiving and home health care not covered. The average out-of-pocket care for ALS patients averages $250,000 or more throughout the timeline of the disease, with estimated yearly costs of $150,000, paid by insurance, individuals, and charities. Adam is planning to return to work and there will be times (we hope) where

He is enrolled at the Cedars Sinai ALS Inter-disciplinary Center with a great team led by Dr. Richard Lewis. Still, while he is the "rockstar" of our ALS team, my real heroes are Dr. Bresbis (our palliative care doctor), Dr. Maxwell, Ph.D., our SLP, and all the great nurses who do the hard, underpaid work at the clinic. Additional case management is with the ALS Association Golden West Chapter and Regional Center. ALS Golden West Chapter

On the crazy roads of the Amalfi coast. June 2019. Still symptom-free.

Pre Op for the Feeding Tube May 2021

Adam's new space mask helps him breathe. January 2022.

With his parents Bake and Peni, and sister Shannon in 2019 for his 50th birthday. Still completely symptom-free. 

A and his mother Peni in January 2016, Navarre Beach FL

A in 2017 in Namsos, NO. My Norwegian family had embraced Adam as one of their own. 

A at clinic with one of the fellows.

A got his surfboard from Roland Custom Surfboards.

In 2021 we started to watch Dido for a friend, and now he has lived with us full time since November. He gives a lot of attitudes.

We love our life here in Los Angeles, where you get all the convenience of living in the city and can still love the outdoors. Minutes away from surfing, mountain biking, golfing, and hiking. Even though we don't do those things anymore, we are grateful for the support of our local friends and neighbors.