ALS Journey

It doesn't look good when one comes back to work from lunch slurring his words, but Edward knew alcohol wasn't the cause and made an appointment with our GP. He was referred to a neurologist with our local hospital in the next town, Englewood, NJ.

Dr. Nova's preliminary diagnosis was Primary Lateral Sclerosis with no explanation or suggestions for treatment - come back in 6 months. Well that didn't give us much to go on so Edward made an appointment with a neurologist, Dr. Robert deNapoli, at Columbia Presbyterian Hospital just across the river.

So in early spring of 1980, while Edward was getting dressed down the hall, Dr. deNapoli came into his office where I was waiting and announced that my husband had 2 to 3 years to live!! But—how could a little slurring kill him? He must have mentioned Amyotrophic Lateral Sclerosis in there somewhere but it didn't mean a thing to me. Dr. deNapoli said the muscles needed for breathing and swallowing would weaken to the point where the patient couldn't breathe or swallow. I don't remember what he said when Edward came into the room. ALS wasn't commonly known then and the doctor didn't mention Lou Gehrig's disease, so we went out of there with me the only one knowing the full, devastating prognosis.

Edward knew there must be more to know and he sent for information on ALS from the government printing office – this was pre-internet, remember. The information he received was blunt, and was found and read by our middle daughter, Maura, who subsequently developed the attitude that there was no point to being careful in life – something could always come out of nowhere and get you. In early 1980 our daughters were Erin (age 14), Maura (age 13) and Nanci (age 9).

Edward was admitted to Columbia Presbyterian for additional tests a few months after the original appointment with Dr. deNapoli. He had a spinal tap among other tests with no indication that his affliction was anything other than ALS.

We started researching health clinics, alternative doctors, vitamins, etc. and decided to do whatever might help and wouldn't do any harm. He took a multiple vitamin made by a health store chemist that had all the amino acids along with vitamins and minerals. Also took about 1000 mg of C and 400 mg of E. The most out-of-the-ordinary pill he took was lethicin. The dose was one 9mg capsule per meal, but unknown to me, Edward was taking quite a few more – "eating them like candy" in his words.

We participated in 2 or 3 healing services given by Catholic priests in large facilities in New Jersey and Boston during this (pre-CA move) time. These were inspirational and encouraging and could have had an effect on the disease progression.

One doctor we were referred to was a pediatrician, neurologist and acupuncturist. She pushed gold needles into different points in his ears and also prescribed 2 mgs of folic acid
(MDR is 400 mcg). Edward, for a few days, was able to speak more clearly after the initial treatment. He also took the folic acid prescription dose for many years (at least ten), then reduced the dosage and only stopped taking a separate dose in the last few years.

Very soon after the diagnosis we began to research vegetarian recipes and the balancing of protein. We decided to eat fresh vegetables as much as possible and Edward eventually had yogurt with processor-chopped fresh fruit daily. Actually our daughters liked the vegetarian dinners and all three became, to varying degrees, vegetarians.

Our home in Tenafly, NJ, was a two-story colonial with attic and basement. There was a full bathroom on the second floor and a toilet in the basement. We realized it would not be long before Edward could not manage the stairs, so the first priority was to build a bathroom on the first floor, which had to be an extension off the back of the house. We eventually moved our bedroom downstairs into the sun room off the living room, and put temporary railings across open spaces by the stairways that Edward could use to navigate the first floor.

In February of 1982, after a fender-bender (caused partially by his slower reactions), and progressive problems with his voice, he retired from the American Spice Trade Association. Over the next few years he moved (with resistance) from cane, to walker, to manual wheelchair-- right before we left for California.

At this point, you might wonder what we did for money. I was selling real estate part time and doing fairly well for the time (high interest rates), but not well enough to support us. From his job he received a small monthly disability check (for five years or as long as he lived whichever came first) that the Spice Trade Association was paying out of its regular budget since they did not have any disability benefits. They generously renewed this every five years then made it permanent. Also about two years before Edward's diagnosis an insurance salesman (now thought of as an angel) sold us a private disability policy which paid us $1000/month for ten years. After six months of state disability, Edward was able to collect Social Security Disability benefits which included amounts for each child until they turned 16 or 18 (I forget which). And I was the caregiver. It's a hard realization that SS, Medicare, private insurance, nothing, in other words, pays for care giving in the home.

A good part of the reason we moved to southern California was to save money. The property taxes were lower and would stay low; the utility bill was much less (almost no heat costs); our youngest could go to college for much less than in NJ and we were able to purchase a smaller, one floor, much more practical home for less than we would clear from the sale of our colonial. The weather was also a factor – Edward could not tolerate too cold or too hot.

On July 9, 1986, we woke up in Irvine, CA, after a wild July 8th which ended in a ride from LAX at night to an address Edward had never seen, and a surrounding area of which I had no recollection. I had bought a house on a 5-day trip months before. Our family now consisted of Edward, Charlotte, Nanci (age 14 and very unhappy about moving) and Chuck (our cat). We had minimal furniture until the moving truck arrived some days later. And to top it off there was an earthquake one of the first nights.

Gradually, we settled in – I tried different part time jobs and we were able to get help from neighbors to prepare lunch for Edward while I was at work and others (mostly high school students) to give him range of motion and other exercises. This worked out with various modifications for quite a few years. We had to replace carpeting with hard floors to make it easier for Edward to use his manual chair before he progressed to a power chair around somewhere in the late 90s.

Over the years Edward was diagnosed many more times by neurologists on both coasts. Early in the journey we went to a local MDA clinic in NJ, then to other neurologists in NY specializing in ALS at MDA clinics in Columbia (Dr. Lovelace) and Mt. Sinai hospitals (Dr. Caroscio). On a business trip before Edward retired he had gone to Dr. Forbes Norris (Presbyterian Hospital of Pacific Medical Center in San Francisco) who prescribed a couple medications then being tried on ALS. One was baclofen to relieve spasticity – tricky because it was a balance between being too stiff or too weak. It was gradually discontinued after many years of use, with no noticeable effects.

After we arrived in Orange County we transferred Edward's medical records from NJ to the MDA ALS Clinic at CHOC Hospital. His diagnosis was confirmed once again by Dr. Richard Dauben and he was seen regularly thereafter. He also was enrolled in a drug trial regarding ALS being done on the human growth hormone by Dr. Richard Smith in San Diego around 1990. He had to have a muscle biopsy to be accepted into the trial. There were probably a few other doctors in there which I could look up if anyone is interested. I know I sent copies of as many records as I could obtain to the head of Neurology at the Mayo Clinic in the late 90s (Dr. Jasper R. Daube) who confirmed the diagnosis and said the medical profession knew less about long-term survivors of ALS than they did about the typical patient.

In 1989 on a Commodore 64 Edward started writing fiction. By 1998 he had slowly produced the four novels described on this website with his right index finger. He spent the following years learning new computers, starting a few more novels, including his autobiography (mostly childhood), rewriting and having edited various parts of the finished novels, writing personal letters and some query letters to agents, exercising as much as he was able, and taking longer and longer to eat and drink.

Even though he has difficulty contributing to a conversation, he has always enjoyed visitors and visiting others when we could. We have been blessed with many friends-old and new, cheerful relatives and active daughters and grandsons who make the days interesting.

At this point Edward needs help with all activities of daily living and since the Veterans Administration declared Amyotrophic Lateral Sclerosis a service-connected disease, we have been able to get the home help which is desperately needed. As of November 2012, Edward has lived an amazing 33 years with ALS.