It was seven and a half years ago that John Driscoll started having excruciating headaches. It has been five years since John received the diagnosis of amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease. John and his wife Judy, now living in Salem, have become well acquainted with the complexities of this neurodegenerative disease during this time.
There has been an increased awareness of ALS in the past three years due in large part to Peter Frates of Beverly and his family, friends, and supporters who inspired the world with the ALS Ice Bucket Challenge. That challenge has raised more than 220 million dollars to help fund research for a cure. However, ALS remains an incurable disease with approximately 6,000 people in the US diagnosed yearly.
For John Driscoll, it was two and a half years of tests and specialists and therapies in an attempt to unearth the cause of his headaches. He met with neurologists, acupuncturists, massage therapists, physical therapists, and primary care physicians. Specialists believed the headaches to be migraines related to food allergies, which initiated six months of allergy testing.
Looking back, Judy recollects that John had an unexplained fall off his boat while parked on his property; she also remembers him frequently dropping things. John had a bent finger that looked sprained, although he had not injured it. The bent finger coincided with the timing of the headaches.
ALS is difficult to diagnose. Essentially a series of diagnostic tests and clinical examinations take place in order to rule out other diseases. Unfortunately, the Driscolls endured these tests for two and a half years before an electromyography test (EMG) confirmed the diagnosis of ALS.
John and Judy were not prepared for the news the specialist at Mass General Hospital delivered. It hit hard. Judy worked in the field of hospice care as a volunteer coordinator in her past. She knew exactly what the diagnosis meant. “I always said it was the worst disease you could have. I could not believe this doctor, who was so kind, was delivering such hateful news to us. I jumped to my feet and screamed at him. I was so angry and in shock. I didn’t want to hear what he was saying.”
John said the doctor turned to him and apologized for having to tell him he had a neuromuscular disease. “He asked if I was familiar with the book “Tuesdays with Morrie.” I knew the story so I understood what he was telling me. The doctor told me ‘don’t go home and look up ALS on the internet.’ So of course, I went right home and that was the first thing I did. I read a description of the disease being compared to being buried alive so that didn’t sound like fun to me.”
Within two months of his diagnosis, John had a heart attack and underwent surgery for the two blocked arteries. Judy lays claim that it was her cooking that gave him the heart attack. “You have to find the humor.”
John worked in the financial field but six months after his diagnosis, he retired from his working life. “I didn’t think I could talk to people about their financial future when I felt I had no future.”
John and Judy were living in Essex, having relocated from Illinois. However, the house was not conducive to the progressive nature of ALS and so the move to Salem happened three years ago. A number of people helped in getting their current home prepared. There were friends from their church in Essex, and family, and firefighters from surrounding towns connected to the Muscular Dystrophy Association, who all pitched in to paint the inside. Local companies donated lumber and paint.
Judy has been relentless in her networking, even though she describes herself as an introvert. “I talk to everyone and make connections. You have to do this in order to get all the help you need.” ALS is associated with the Muscular Dystrophy Association (MDA) and Judy met one person from MDA who then got the involvement started with the house renovation project.
The Compassionate Care ALS Association (CCALS) helped with equipment and Judy learned about them through a contact with the ALS Association. Easter Seals is an organization that has provided various tools for John like the eye gaze computer and Easter Seals installed the automatic door opener in the house.
“I didn’t know anything about North Shore Elder Services (NSES) and was put in touch through a meeting with a Shine counselor. Now John receives hours of care each week because of NSES.” Judy credits Care Manager Barbara Quinn with overseeing John’s care from home health agencies and for her assistance with the overwhelming paperwork for everything.
The Driscolls advice to managing through catastrophic disease is to throw the net out as wide as you can in order to find all the help you will need.
John was sixty-four years of age when he and Judy’s world was turned upside down with his diagnosis of ALS. “The neurologist told me whatever you have wanted to do, do NOW.” Fortunately, with the help of Judy, daughter and son-in-law, and son, plus many supportive friends, John has been able to accomplish all that he put on his bucket list.
John loves museums. Six months after his diagnosis, a close friend started taking John to a museum every Wednesday. Friends helped John check one of his bucket list wishes. They took him by handicapped van to Washington DC to visit the Smithsonian.
John also loves cars. Another friend arranged to meet John at Watkins Glen International in New York. John assumed he would be a spectator watching the car races but this friend had taken racing lessons and entered himself and his Porsche in the Vintage Car Race with John as his passenger.
Friends arranged to take John thermal soaring in New York State that same weekend. John describes the experiences as thrilling.
ALS has decreased John’s energy. Today it is harder to get out for activities as he tires more quickly. However, he has regular visits from friends in the mornings. He also receives various therapies like massage, Reiki, and music therapy through his hospice care.
It is a busy time for Judy most days. She gets up early to get things prepared for when John gets up. There is all the housework, laundry, and shopping, cooking, and bill paying, to manage. An aide comes in at 8 am for an hour but Judy needs to be available to assist in his care and transferring out of bed.
A hospice aide comes mid-day during the week. During this hour and a half, Judy can leave John in the hands of this aide.
As a caregiver, Judy knows it is important for her to attend to her own health needs but it is not always easy to find that time for herself. Some days it is impossible because there may be people in and out all day and phone calls to make and not until she goes to bed at night does she have a moment to herself. “I’m 70 years old and I’m tired. However, I simply have to resolve to start over each morning.” Judy believes she has to “stay in the day” and not let herself dwell too much on what lies ahead.
John and Judy have been married forty-eight years. They cope together with humor. They rely on good friends and family to be there with support and love. John relies on prayer and enjoys the weekly visit with his pastor. John accepts that he cannot change the progression of his disease. He talks openly about his voice becoming weaker and losing more muscle movement, like his knuckle, which he can still use to operate his iPad.
He believes one of the gifts of ALS has been meeting so many caring and kind people who have given to him; some workers have become like part of the family.
It would be impossible to be prepared for a disease like ALS; financially, emotionally, physically. More research will bring an understanding of the disease and a cure. More organizations working together to bring financial assistance to families caring for someone with ALS would help lighten the burden.
If you would like to know more about ALS and the available resources, check the following organizations and their websites.
The ALS Association at www.alsa.org/
The A.L.S. Family Charitable Foundation at www.alsfamily.org/
Muscular Dystrophy Association at www.mda.org/
Easter Seals at www.easterseals.com/
Compassionate Care ALS at www.ccals.org/
NSES serves many consumers in our five communities. We offer many different programs and services through private donations and state and federal contracts. If you are interested in learning more about the services at NSES, you can call us at 978-750-4540 or check our website at www.nselder.org. If you would like to make a referral for yourself or someone you are caring for, you may also visit our referral page at http://nselder.org/contact-us/referral-form/