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ALS Association, UT Medicine lift up patients, families

Posted on Friday, September 21, 2012 · Volume: XLV · Issue: 19


Mary Klenke (center), a member of the board of directors of the Amyotrophic Lateral Sclerosis (ALS) Association Texas Chapter, visits with Pamela Kittrell (left), clinical research nurse-senior, and Carlayne Jackson, M.D., FAAN, director of the ALS Association Certified Center of Excellence at UT Medicine San Antonio. It is one of only two certified ALS centers in Texas.
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Mary Klenke (center), a member of the board of directors of the Amyotrophic Lateral Sclerosis (ALS) Association Texas Chapter, visits with Pamela Kittrell (left), clinical research nurse-senior, and Carlayne Jackson, M.D., FAAN, director of the ALS Association Certified Center of Excellence at UT Medicine San Antonio. It is one of only two certified ALS centers in Texas. clear graphic

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Contact: Will Sansom, 210-567-2579

SAN ANTONIO (Sept. 19, 2012) — UT Medicine San Antonio volunteer Mary Klenke became inspired to help patients and families with amyotrophic lateral sclerosis (ALS) in 1983 when her own mother in Kansas received the diagnosis.

Looking for answers and wanting to do something to help from 750 miles away, Klenke found there was no San Antonio support group to meet with or to point to resources. Her mother’s illness lasted nine months. Then Klenke convened the first ALS group meeting in the city.

Since that time, her compassionate and selfless dedication has impacted hundreds of ALS families. “Don't believe everything you read on the Internet about ALS,” Klenke says. “Hope and help are available, and we have had some longtime survivors.”

ALS Association Certified Center of Excellence
Eventually she met Carlayne Jackson, M.D., FAAN, professor of neurology and otolaryngology in the School of Medicine at the UT Health Science Center San Antonio. Dr. Jackson, who since the 1990s has treated and studied many patients with neuromuscular diseases, including ALS, is assistant dean for ambulatory services and chief medical officer of UT Medicine San Antonio, the School of Medicine’s clinical practice.

In 1996 Dr. Jackson and Klenke started the ALS Association Certified Center of Excellence at University Hospital, the Health Science Center’s teaching hospital. The multidisciplinary clinic is now held 45 Wednesdays a year in UT Medicine San Antonio’s flagship clinical building, the Medical Arts & Research Center (MARC). “The clinic operates as a true team — every player is critical to deliver the highest level of care to both the patient and their families,” Dr. Jackson said.

“This clinic is a shining star,” Klenke says. “Dr. Jackson guides its direction and is known internationally for her work with ALS.”

In all of Texas there is only one other ALS Association Certified Center of Excellence.

What is ALS?
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Motor neurons decline and die, damaging the brain’s ability to initiate and control muscle movement. Muscles atrophy and patients in late-stage ALS may be paralyzed.

Four ALS chapters in Texas
Klenke headed a freestanding support group for 14½ years that became an ALS Association chapter in South Texas. This past February, the ALS Association Texas Chapter was formed. Chapter offices are in San Antonio, Dallas, Houston and Austin; Klenke is a member of the board of directors.

ALS clinic patients often live longer and have a better quality of life
The clinic includes two staff members and four volunteers from the ALS Association who are integrally involved in helping families at the clinic. Research has proven that patients who attend an ALS clinic live 12 to 18 months longer and with improved quality of life than patients who do not have the same support, says Steve Morse, the Texas ALS Association’s care services director.

ALS Association plays a strong role at the ALS clinic
“We help families live with the disease,” Klenke says. “A diagnosis is a new world and ALS is a family disease — it affects everyone.”

At lunchtime in the clinic, families meet with Klenke, Morse and other chapter workers for orientation and encouragement while the medical team meets in a different room to discuss the afternoon’s cases. “Dr Jackson is professionally trained in the disease,” Klenke tells the attending families. “She is dedicated to finding a treatment and a cure for ALS. The team is dedicated, too. This isn't a job for them, it's a mission.”

The ALS Association provides lunch at every clinic. “My role is to make families comfortable as we tell them about services,” Klenke says. In recognition of the many ways she has helped families, Klenke was named a 2012 Health Care Hero by the San Antonio Business Journal. “Mary has been my coach since we started the clinic, always pushing us to do our best and encouraging us to continue to fight this devastating disease,” Dr. Jackson says.

The ALS Association’s services include a respite program for caregivers, transportation if needed, a counselor, durable medical equipment such as wheelchairs, and a bereavement program. Morse attends every clinic and follows up with families on equipment, community resources and other needs.

Last year the chapter donated more than $33,000 directly to the clinic. When other services are taken into consideration, the chapter’s support likely surpassed $55,000, an inestimable value to the families coming to UT Medicine San Antonio.

The chapter also works to increase the visibility of the clinic so that more people are aware of ALS research studies and the outstanding clinical care for ALS families.

It can be a difficult mission at times. On the recent clinic day, a lady came who was “locked in” — conscious and aware but no longer able to communicate except through eye movements.


Mary Klenke (right), a volunteer with UT Medicine San Antonio and the ALS Association, visits with Valinda Holcomb at the ALS clinic held Wednesday afternoons at the Medical Arts & Research Center, the home of UT Medicine San Antonio. Holcomb, diagnosed with ALS six years ago, holds an augmentative communication device that she is using to write her memoirs.
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Mary Klenke (right), a volunteer with UT Medicine San Antonio and the ALS Association, visits with Valinda Holcomb at the ALS clinic held Wednesday afternoons at the Medical Arts & Research Center, the home of UT Medicine San Antonio. Holcomb, diagnosed with ALS six years ago, holds an augmentative communication device that she is using to write her memoirs.clear graphic

 

After the lunchtime gathering, patients are moved to exam rooms. Klenke, Morse and others continued the dialog with families there. In one of the rooms, Valinda and Jesse Holcomb of San Antonio awaited visits by Dr. Jackson and team members. Valinda Holcomb is writing her memoirs on an augmentative communication device.

“I started having symptoms in 2004,” she said. “My left foot would drop. In 2006 I was diagnosed. We were going to go to Houston, then found Dr. Jackson. So many ALS patients die so fast. I am blessed.”

For more information about the ALS Association Certified Center of Excellence at UT Medicine San Antonio, call 210-450-9700 or visit http://www.uthscsa.edu/neurology/clinical_care.asp. For more information about the ALS Association Texas Chapter, call 877-257-4673 or visit http://alsa-texas.org.

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UT Medicine San Antonio is the clinical practice of the School of Medicine at the UT Health Science Center San Antonio. With more than 700 doctors – all School of Medicine faculty members – UT Medicine is the largest medical practice in Central and South Texas. Expertise is in more than 100 medical specialties and subspecialties. Primary care doctors and specialists see patients in private practice at UT Medicine’s flagship clinical home, the Medical Arts & Research Center (MARC), located at 8300 Floyd Curl Drive, San Antonio 78229. Most major health plans are accepted, and UT Medicine physicians also practice at several local and regional hospitals. Call 210-450-9000 to schedule an appointment, or visit www.UTMedicine.org for a list of clinics and phone numbers.

 
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