Living Independently with ALS

by Miriam Davidson on Sun, 2011-05-01 14:35

With the help of planning, persistence and technology, some people prefer to live on their own

David Jayne has had ALS since 1988, and has lived on his own for 11 years. Here he walks his dog near his home in Georgia.
Article Highlights:
  • Long-term ALS survivors Fern Cohen and David Jayne describe how they manage to continue living independently in spite of the disease.
  • Bob Osborn, a nurse and case worker with the Forbes Norris MDA/ALS Center at California Pacific Medical Center in San Francisco, offers tips for independence, advising people with ALS to stay ahead of the disease as much as possible, especially with regard to getting necessary equipment like feeding tubes, breathing machines, power wheelchairs and communication devices.

When it comes to living independently with ALS, Fern Cohen of Queens, N.Y., tells it like it is.

“I can live without a man,” Cohen states on her blog, “but I can’t live without my machines.”

It’s a sentiment that David Jayne, of Rex, Ga., understands well. Jayne’s wife divorced him when he decided to go on mechanical ventilation, about a decade after his ALS diagnosis in 1988. He lived independently for another 11 years until his new fiancee and her children moved in with him in 2010. Fern Cohen has lived alone continuously since her diagnosis in 2004.

As long-term survivors of ALS, Jayne, 50, and Cohen, 55, know how difficult it can be to live independently. Neither can talk nor move their arms and legs, both have feeding tubes, and Jayne relies on a tracheostomy and a ventilator to breathe. Cohen uses noninvasive ventilation, mostly at night.

Finding reliable home health care aides has been a huge challenge for both of them, as has meeting the costs of their care. Yet both say living on their own is their preferred option, and — with planning, determination and the help of technology — they have been able to make it happen.

Privacy and independence

Bob Osborn, a nurse and case worker with the Forbes Norris MDA/ALS Center at California Pacific Medical Center in San Francisco, says people with ALS who choose to live by themselves are rare, but not unheard of. He says he’s noticed that younger people with ALS who want to live alone often do so because they fear loss of independence, while older people fear a loss of privacy.

Osborn says people often continue to live alone for a while after an ALS diagnosis, if that’s what they were doing before. Yet as symptoms progress and the need for help increases, most eventually move in with friends or family members.

Osborn and other ALS experts encourage those who want to continue to live independently to consider all their options and plan carefully (see "Tips for Living Independently" sidebar below).

“Without being patronizing or casting judgment, we try to get them to think about all the possibilities — earthquakes [in San Francisco, a not-unlikely event], fires, other emergencies. A lot of people with ALS have bulbar involvement, and have trouble swallowing. What if they start choking?”

Getting everything set up

Both Jayne and Cohen were strong, independent and hard-headed individuals when they received their diagnoses — and they still are. Jayne was a stockbroker and financial consultant, and Cohen had spent many years in the international travel and tourism business before becoming a high school teacher in Harlem.

Both faced ALS head-on and did what they had to do to keep living on their own. They arranged accessible housing and transportation. They looked for loaners and funding sources, including grants and free trials, for the adaptive equipment they needed.

They stayed ahead of their disease as much as possible by getting feeding tubes, breathing machines and other needs taken care of early. They made sure they had a way to call for help in an emergency.

Caregivers good and bad

Not surprisingly, given their need for around-the-clock assistance, both Jayne and Cohen had trouble finding good paid caregivers. “With my high level of care and financial position it was an extreme challenge to find caregivers I could afford with enough intelligence to keep me alive, literally,” Jayne said in an email.

On her blog, Cohen describes her paid caregiver nightmares, including being robbed of money, a brand-new digital camera and other valuables. She describes paid caregivers who were ignorant about ALS, lazy and abusive. One slept in a chair all day and snored so loudly the apartment shook. Others would call their supervisors to complain about the level of care Cohen needed, saying loudly enough for her to hear, “Don’t ever send me this patient again!”

Both Cohen and Jayne battled the system to improve their own situations, as well as that of others living with ALS. Cohen successfully used personal connections to lobby her home health care agency to give her better care, and she has been working with other disability rights advocates in New York to keep a Medicaid-funded Consumer Directed Personal Assistance Program (which allows recipients to hire and fire their own caregivers) from falling victim to state budget cuts.

In the late 1990s, David Jayne briefly lost his home health aide after it was discovered that he had left his house to attend the funeral of a friend who died of ALS. (At the time, homebound Medicare recipients were not allowed to leave their houses for any reason other than doctors’ appointments, church services or adult day care.)

Jayne got his Medicare home health services restored, but then decided to challenge the rule publicly in order to help other people in the same situation. He went to a University of Georgia football game, gave speeches and even attended a rally at the state capitol with a sign on the back of his chair saying, “If Medicare knew I was doing this, I’d be discharged.”

Jayne started a listserv and a national organization dedicated to changing the rule, raising enough money to travel six times to Washington, D.C., to lobby for the change. His efforts ultimately resulted in the signing of an executive order relaxing the restrictions.

Jayne was able to do all this because a friend had arranged a group of local volunteers to help him. A book Jayne mentioned on his listserv, “Share the Care,” gave his friend the idea, and she recruited more than 50 people from Jayne’s church, as well as other community members, to join. Jayne’s “circle of friends” has helped him do everything from mowing the lawn to decorating the house for Christmas to traveling to Washington, D.C.

Meeting the costs of caretaking also has been a struggle. To supplement his Social Security and other income, Jayne has received help from his church, his parents, and a benefactor. Cohen supports herself entirely with her Social Security check.

Fern Cohen gets around in a power chair.
David Jayne uses software he designed to drive his power chair down the hall at a rehabilitation hospital in Atlanta.

Alone, but not lonely

Whether living alone affects the course of ALS has not been specifically studied, although some overall survival studies have found that, in general, people who live alone do not do as well as those who live with friends or family.

However, this may have more to do with isolation and lack of social support than living alone, per se. One German study found that depression and anxiety among people with ALS was more correlated with lack of social support than with severity of symptoms.

That is apparently the case with Fern Cohen and David Jayne, both of whom manage to stay active and involved despite increasingly severe symptoms.

AAC (augmentative, alternative communication) devices make it possible for them to stay connected. “Without recently developed, life-changing technology,” Cohen writes, “I would be totally isolated, barely able to leave my house, and unable to communicate with family and friends in any decent way.”

Cohen, who still has some use of her hands, relies on a text-to-speech device called a Mercury, which is mounted on her wheelchair, for in-person communication. She uses Sprint Relay, which she can access through her laptop, to make phone calls. Jayne, a technology enthusiast, has a Bluetooth-enabled sensor attached to his cheek that recognizes electrical impulses in his jaw and uses wireless software to convert the impulses to speech.

“I use EZ Keys, and the Impulse switch [made by Neural Signals and marketed by Ablenet] is phenomenal,” Jayne reports. “I developed the software a few years ago to drive the wheelchair through the laptop, and the Bluetooth switch interface has dramatically improved both my driving and typing accuracy.”

Both Jayne and Cohen use their AAC technology to stay active in ALS chats and other social media. Reaching out to help others with the disease, or who have family members with ALS, helps them stay strong and positive. In fact, David Jayne met his fiancee on an ALS chat. (She joined because her father, who has since passed away, had ALS).

Living independently in community

People with ALS who want to live “alone” but with supportive care may be interested in the new ALS Residence at the Leonard Florence Center for Living in Chelsea, Mass. This facility near Boston, which opened last year, is the first of its kind in the nation.

The ALS Residence is part of a nationwide initiative that seeks to build similar living places for people with ALS in other cities. The building in Chelsea was constructed with funds from a capital campaign, and residents’ costs are covered by Medicaid.

Residents at the facility have private, accessible bedrooms and bathrooms, as well as computers on their power chairs that allow them complete control over their environment using eyegaze, switches and other technology.

From their wheelchairs, residents are able to do such tasks as open and close doors, turn lights on or off, surf the Web and call for help. They can order a drink from the lobby café via email, or take the elevator to the ground floor and head outside to the veranda.

At the same time, residents share a kitchen, dining and common area and enjoy group activities such as going out to restaurants, museums, movies — even skiing and skydiving.

The ALS Residence Initiative’s maxim is a variation of Fern Cohen’s I-can-live-without-a-man philosophy, and a fitting one for all who seek to live as independently and productively as possible with ALS.

It says: “Until medicine proves otherwise, technology IS the cure.”

Miriam Davidson
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