Local ALS chapter grows as needs for its services increase
Multidisciplinary care concept formed

Courtesy photo

"I go everywhere in my power wheelchair just to be outside," said Chris Chergoski, 32, shown at an ALS Walk in Ventura. "Now I joke that I retired young."


When social worker Fred Fisher took over as president and chief executive officer of the ALS Association Greater Los Angeles Chapter, he was 50 percent of its full-time staff.

Sitting in the chapter's headquarters in Agoura Hills, Fisher recently outlined its growth from an $850,000 budget five years ago to a $2.7 million operation with about 15 full-time staff members and 15 part-time workers helping ALS families.

"What is significant is the way we've changed the way we do business," Fisher said about the local chapter, which is marking its 20th anniversary this year.

"We've gone from trying to be there for people with ALS" to "being partners with the medical community to provide care needed and creating an awareness" with the ALS patient, family and the community at large, he said.

ALS is the short name for amyotrophic lateral sclerosis, a progressive neurodegenerative disease that erodes the body of its ability to walk, speak, swallow and breathe.

The condition is commonly known as Lou Gehrig's disease, after the famous American baseball player who in 1939 abruptly retired when diagnosed with ALS.

The attitude about ALS has morphed from considering it a terminal disease to seeing it as a chronic disease, Fisher said.

He said there have been "hopeful" advances in innovative mobility equipment and communication devices to help combat the profound impacts. The adaptive items include pens, hairbrushes, forks and even chairs.

"As long as you can move any part of your body, we can help you adapt to even speak," Fisher said.

These adaptive tools can be incorporated with a computer so that "even one person who could only tap his knees together" could be helped, he said.

"ALS only affects your body and your voluntary muscles but not your brain," which just can't communicate what you're thinking, Fisher said.

That's why "when you have ALS, you can't scratch an itch."

After noticing problems with his speech in February, Jim "Poolman Jim" Reimers of Thousand Oaks was diagnosed with ALS.

'Longer, more fulfilling lives'

"As of August, Jim can't walk much independently, talk, turn in bed or shower himself," said his wife, Andrea Reimers.

ALS affects nerve cells in the brain and spinal cord, and starts with muscle weakness or stiffness. It usually leads to paralysis in later stages of the disease.

The life expectancy of a person with ALS averages two to five years; however, with medical care, ALS patients can live "longer, more fulfilling lives," sometimes even 10 to 15 years, according to Dawn Muroff, the local chapter's community outreach coordinator.

Development of a multidisciplinary care concept is an achievement that Fisher considers a landmark.

Every three months, ALS patients go to a care center — if one is available in their region — and, in a single day, they see representatives of nine medical specialties: neurology, gastroenterology, physical therapy, occupational therapy, nutrition, psychiatry, speech, respiratory and nursing.

Quarterly medical scrutiny is considered essential because as the disease marches forward and without warning, "one day, you are able to brush your teeth; the next day, you can't hold the toothbrush," Fisher said.

"Everything we do, we do at no cost to the patient," said Kimberley Daughton, a licensed clinical social worker and the chapter's director of patient and community services.

The local chapter's statistics show that it served fewer than 200 patients five years ago, and the number jumped to 476 in the fiscal year that just ended.

The total is expected to rise this year to 510 patients.

"That is remarkable growth," Fisher said. "The level and quality of services we provide has grown exponentially. That's the good news. We've more than doubled the number of patients we see and tripled the spending.

"The bad news is we're only reaching half the people who have this disease," he said.

And the reality is "if everyone we could help came to us, we wouldn't be able to serve them: not enough resources."

Even today with an almost $3 million chapter operation, "this is a labor-intensive effort. We're a service organization providing service-involved people, which means to offer the services, we need funds."

Chris Chergoski of Ventura is one recipient. Chergoski, 32, graduated from CSU Chico with a physical education degree.

Employed in construction, in April 2002, he began experiencing muscle twitches and a "hitch" in his step, which he chalked up to long workdays six days a week.

But the symptoms didn't disappear while backpacking 2 1/2 months around Europe that summer with his wife-to-be, Karen Ehret.

'Very helpful assistance'

A December 2002 visit to the doctor led to more medical appointments and, two months later, a pronouncement: ALS.

Initially, Chergoski had tried self-diagnosing his symptoms with online research, but once the diagnosis was rendered, he connected to the ALS Association, where he said he has found "very helpful assistance."

"First off, everyone from the ALSA is always happy, upbeat and supportive, which is great," he said.

His ALS case manager relays updates on new programs, news of grants like the one Chergoski landed for free legal assistance, information on finding an online site for a new wheelchair van, and being matched with caregiver programs so Chergoski's wife and mom can head for work with peace of mind.

Also, Chergoski has accessed ALA's equipment loan pool.

To expend less energy, the soft-spoken Chergoski uses a voice amplifier.

With adaptive equipment for computers, Chergoski wrote in an e-mail, "I was able to find a hands-free mouse, on-screen keyboard and other software to be able to continue to use a computer. It is great to be able to get on the Internet, write e-mails, make connections and feel productive.

"Early in my disease," he said, "I was too proud and stubborn to go out in a wheelchair," but that has changed these days.

"I go everywhere in my power wheelchair just to be outside and part of things ... even camping."

Said Chergoski: "Now I joke that I retired young."

The Greater Los Angeles Chapter of ALS covers seven counties split into 15 service areas.

'A close-knit community'

"We are very proud that in Ventura County, we have the highest penetration of treatment for ALS patients: 80 percent of identified persons," Fisher said.

He compared that with the 47 percent penetration in the San Fernando Valley — the next closest penetration — and 12 percent in South Los Angeles.

Why such a gap?

"Ventura County is a close-knit community" that wants to make sure that people get what they need, Fisher believes.

But Ventura County is also home to Naval Base Ventura County. Said Fisher: "Veterans, no matter what theater, what branch, whether state side or overseas, are at 60 percent greater risk of ALS than the general population. And Gulf War vets are at twice the risk."

That's the reason that the Agoura Hills-based ALS chapter has targeted outreach into the military community and has one staff member, veteran Jennifer Stone, as liaison.

Fisher said it's not clear what the link is between military service and ALS, but the question is being posed, and the ALS Association's national office is asking for increased funding and promoting the creation of an ALS registry.

2 bills on governor's desk

In the state, two ALS-helpful bills have been introduced. SB 1502 creates a tax check-off for ALS, enabling state taxpayers to designate on their tax return forms specific amounts to be donated to ALS research.

SB 1503 creates a place in the California Health and Safety Codes for ALS and recognizes the Centers for Excellence multi-disciplinary care centers.

As of Friday, the bills were on the governor's desk awaiting his signature.

Brenda Klopfstein, 58, of Port Hueneme worked as an electronics technician until 2004, when she took medical retirement because of the effects of ALS.

In 2008, her mobility from her waist down is a memory only, "but everything from the waist up works," she said Friday.

Thus the mother of three daughters enjoys crossword puzzles and lunching with friends.

Also, she appreciates the commitment of her caretaker husband, John.

"I'm told I'm really lucky to have John since the spouses of some ALS patients walk out; they can't take it," she said.

John Klopfstein, 59, pinpoints the primary source of assistance as not coming from an ALS chapter case manager, but his own online research.

The longtime Port Hueneme residents regularly go to the ALS Center of Excellence at Cedars-Sinai Medical Center but not ALS support groups.

"My wife is such a strong person; she doesn't want to see what's going to happen," he said. "And she knows already what is happening."

To learn more about the ALS Greater Los Angles Chapter, call 818-865-8067 or visit http://www.alsala.org.

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