Ask the Doc:
Q & A with Edward Kasarskis, MD, PhD
Each issue we will feature a leading neurologist specializing in ALS responding to a question.
Edward Kasarskis, MD, PhD is Director of the University of Kentucky ALS Multidisciplinary Clinic at Cardinal Hill Rehabilitation Hospital in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY.
Q: What should someone with ALS know about taking over-the-counter pain medications for common ailments, like headaches or other everyday aches and pains?
Dr. Kasarskis:
It’s common for people with ALS to have aches and pains just like all of us. Most people 50 and over have some osteoarthritis or degenerative arthritis, and the immobility associated with ALS can make that discomfort worse. Muscle cramping can also be associated with ALS. And of course everyone can get a headache, a sore throat or ordinary muscle tension.
People with ALS can and should treat those common discomforts, and I suggest first trying something that has worked for you before, such as Motrin, Tylenol or Aleve. If you’re taking other medications, it’s smart to ask your physician or pharmacist if the pain killer you’re choosing might interact with another medication you’re taking.
If the non-steroidal medication doesn’t work, talk with your physician about what the best next level drug would be for you. If you find your pain is related to joint immobility, you may benefit from physical therapy that will help maintain as much mobility as possible, which may reduce your discomfort, too.
Each issue we feature a leading neurologist specializing in ALS responding to a question. If you would like to submit questions for a future Q & A, please send your questions to Amber Walters at awalters@alsa-national.org. Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally. TOP
Getting Medical Records Organized for the New Year
It quickly can go way beyond clutter to complete chaos.
 Organizing the myriad notes, forms, test reports, screening outcomes, insurance claim forms and bills can easily become overwhelming. What’s worse, not having key information at your fingertips can cost valuable time, money, and sometimes may even require repeat tests, or create confusion about drug and treatment regimens. And the more physicians, specialists and therapists you see, the greater the risk of losing track or miss-filing valuable data.
But organization experts offer a range of workable solutions. The best bet may be a dual system involving both a computer and a traditional filing system: keep a log of appointments and outcomes and a medical history on your computer, and have a filing system for the printed records you’ll naturally collect, such as insurance claims, test reports (including from blood work and ultrasounds to physical therapy evaluations), and prescriptions. If you don’t have a computer, put a log of appointments and your medical history, continually updated, in separate files.
Here’s specifically what to do:
On the computer, if possible:
- Write a medical history including all the key data you know, including the date of key diagnoses, surgeries and any related problems, and any significant tests and their results. Keep this handy and bring it with you when you have an appointment with a new physician or healthcare professional.
- Maintain an active log of the date of all appointments you have had, the person you met with, the exam, evaluation or discussion, outcomes, and any recommendations or prescriptions.
In hard-copy, dedicate a large accordion-style folder or file drawer and label separate folders for the following:
- Addresses and phone numbers of physicians, therapists, counselors, and others
- Lab and other test results (Be sure to always ask for a hard copy of reports)
- Home health care visit information, if applicable
- Physical, respiratory, speech and occupational therapy notes, if applicable
- Insurance claims forms and any written communication
- Phone logs that note dates, names and conversations with a) healthcare providers
- and b) third-party payers, such as Medicare or insurance representatives
- Disability related paperwork or communications, if applicable
Make a laminated card for your wallet that tells:
- Your name and the name and contact number of a spouse, partner or friend to contact in case of emergency
- Any major diagnoses, such as ALS, diabetes, etc.
- Any allergies
- Your blood type
- The name and phone number of your primary care physician
- Any limitations you have that medical personnel should know immediately, such as difficulty talking, walking, swallowing, etc.
- Prescription drugs you are taking and their dosage/frequency
- Anything else that would be important to know in an emergency
Get a portable tote to bring important papers, reports, etc. to appointments with physicians and other health providers.
Resources
http://www.shoplet.com/: Has a good assortment of expanding files (from $9.95 and up).
http://www.containerstore.com/: a variety of files, plus nice portable files to bring with you to have papers ready during appointments (starting at $6.99).
http://www.seejanework.com/: This site has a wide range of organization products designed to add a little color and design to the project of getting organized.
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Promoting Voice and Choice
Call into a free teleconference for people with ALS and their families that will explain how to get assistive technology.
- Learn how to get communication devices and computer access equipment
- Hear from Alisa Brownlee, Assistive Technology Specialist, how to navigate the system
- Participate in a Q & A session
Alisa Brownlee directs the assistive technology consultation program for The ALS Association’s National Office and for the Greater Philadelphia Chapter. She has 12 years of experience in the field and has presented widely at professional conferences. This teleconference is supported in part by a grant from DynaVox.
There are two different dates and times to choose from:
Tuesday, January 13, 2009 2:00 pm 3:00 pm Eastern Time
Meeting number: 820 732 040
Meeting password: DynaVox2009
Go to https://alsa.webex.com/alsa/j.php?J=820732040
Follow the instructions that appear on your screen to join the teleconference.
To join by phone only, dial 866-699-3239 and follow the instructions.
Thursday, January 29, 2009 at 7:00 pm 8:00 pm Eastern Time
Meeting number: 826 571 564
Meeting password: DynaVox2009
Go to https://alsa.webex.com/alsa/j.php?J=826571564
follow the instructions that appear on your screen to join the teleconference.
To join by phone only, dial 866-699-3239 and follow the instructions.
RSVP: Jamie Aranda at jaranda@alsa-national.org or 818-587-2216 by Monday, January 12, 2009 and Wednesday, January 28, 2009.
Questions? Contact Alisa Brownlee at alisa@alsphiladelphia.org or call 215-631-1877.
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ALS Association Co-Funds Study Showing Boosting the Body’s Detoxifying System Counteracts Nerve Cell Loss in ALS Mice; New Therapies Suggested
In a study that demonstrates a much-anticipated proof of principle, scientists report that raising activity of a natural detoxification system in the body can counteract the progressive loss of nerve cells that characterizes amyotrophic lateral sclerosis (ALS), significantly delaying the onset of disease and extending life.
The research, led by ALS Association-funded scientist Jeffrey Johnson at the University of Wisconsin, was carried out on two different mouse models carrying the human gene for a familial (inherited) type of ALS (Lou Gehrig’s Disease) and on cultures of motor neurons at risk of death from the gene.
Studies elsewhere have shown that action of the detox system benefits models of acute injury, such as stroke. This new work, however, reveals that ramping up this system in live animals is effective against a chronic neuron-killing disease such as ALS and that the benefits can occur before its onset.
Johnson’s ongoing encouraging studies of the principle in Parkinson’s, Huntington’s and Alzheimer’s disease models suggest its broad application.
The published research also verifies key parts of the protective pathway, suggesting new targets for therapies to come. “Even though we did this study in a mutant mouse model,” Johnson says, “this pathway — and the reason it’s needed — is the same in humans. That’s true, studies show, both in patients with the familial form of ALS or with the more common sporadic form. “We believe that bodes well that our results will apply to ALS in general,” Johnson says.
“We are excited about the potential new pathways for ALS therapy suggested in this research,” said Dr. Lucie Bruijn, Ph.D., senior vice president for research and development at The ALS Association.
An account of the research appears this week in the Journal of Neuroscience.
Amyotrophic lateral sclerosis is the most common adult-onset disease of motor neurons — those that spark movement. It destroys motor neurons in the spinal cord, brain stem and in higher brain centers specific for movement.
The current study centers in part on a detox system that has received increasing attention in the last decade. Cells rely on the so-called phase II detoxification enzymes — the same system that broccoli chemicals stimulate — to blunt the flood of damaging free radicals that occurs in many illnesses, including ALS.
Johnson has focused on what activates that system, what turns on the battery of genes coding for its protective proteins. A body of work, including his, shows that the main “on” switch for the response is a complex dubbed Nrf2-ARE. And, what caught Johnson’s eye were places in which Nrf2-ARE is most active. These are the astrocytes — star-shaped cells found widely in the central nervous system. It’s no surprise that they’d carry a detox package, Johnson says; the nervous system’s complexity and high energy requirement make it especially vulnerable to damage.
Astrocytes are companion cells to motor neurons, exchanging many molecules with them and, in general, shaping their survival. Because part of this conversation involves the Nrf2-ARE pathway, astrocytes became a focal point of the study. “We reasoned that upping Nrf2-ARE in neighboring astrocytes might protect neurons in chronic distress,” Johnson explains.
The team explored this possibility in rodents. They created transgenic mice whose astrocytes overproduced Nrf2. As a test of the protective power of the Nrf2-ARE pathway, they then crossed those mice with ALS models. (ALS model mice carry the human SOD1 gene that causes that disease in some families.)
Normally, such mice die in 128 days. But those with Nrf2 over-expressing astrocytes lived some 21 days longer — that’s highly significant in this field. Also, onset of disease was delayed by 17 days. In follow up tissue studies, the team showed that normal nerve-muscle connections held much longer — they deteriorate in ALS mice — keeping muscles active longer and slowing atrophy. The same studies with a second type of ALS model mouse showed similar benefits.
Also revealing was the team’s research that focused on cell cultures. It built on earlier work by the study’s first author Marcelo Vargas, recipient of the Milton Safenowitz Postdoctoral Fellowship Award for ALS Research. When Vargas layered healthy young motor neurons atop a layer of astrocytes from ALS mice, 40 percent of the motor neurons died. In this new work, the team placed the healthy motor neurons atop a layer of astrocytes from the ALS-Nrf2 combo mice. That completely reversed the toxic effect.
“What’s so interesting,” Johnson says, “is that the mutant gene is still in the astrocytes; but adding Nrf2 to them neutralizes its effects. That saves the neurons.”
Finally, to help explain what actually was protecting the motor neurons, the team checked neighboring astrocytes for the molecule glutathione. Glutathione is the major antioxidant source in cells, Johnson says. It’s a key part of nerve cells’ Phase II protective pathway, which branches out in a host of specific directions after glutathione is formed.
Astrocytes cultured from the Nrf2-bountiful mice had twice the usual concentration of glutathione. Further tests showed that protection of the nearby motor neurons depended on glutathione secretion into their environment. “It’s extremely difficult to increase glutathione experimentally in the central nervous system,” Johnson explains. “You can’t just shoot it into people or animals. But we found a 25 percent increase in the molecule in the spinal cords of the Nrf2-ALS mice.
“What we’re doing,” he adds, “is highjacking the cell’s normal pathway and upregulating it to make the motor neurons stronger, more able to withstand assault.
“It shows that by targeting astrocytes, it’s possible to improve their benefits to motor neurons and thus alter the course of ALS. Our work also validates Nrf2 as a viable target for therapy in chronic neurodegenerative disease.”
Delinda Johnson, Daniel Sirkis and Albee Messing were also members of the University of Wisconsin research team. The study was funded by The ALS Association, the Robert Packard Center for ALS Research at Johns Hopkins, and National Institutes of Health grants.
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Duke ALS Clinic Certified by The ALS Association,
Affiliated with One of the Best Hospitals in the U.S.
By Gary Wosk, Staff Writer The Duke ALS Clinic, where more than 300 people with ALS receive compassionate care from a multidisciplinary team of experts who strive to maximize the quality of life for those living with the disease, has been certified by The ALS Association as a Center of ExcellenceSM.
Started in 2001 by its current medical director, Dr. Richard Bedlack, The Association’s 33rd Center of Excellence is located in the Duke Neurological Disorders building at the Duke Health Center, which is near Duke Hospital.
"I am thrilled that The ALS Association has selected the Duke ALS Clinic to be their 33rd certified center,” said Bedlack, who, in addition to providing care to people with ALS, is involved in increasing awareness of the disease through advocacy and sharing his ALS expertise with other physicians.
“The partnership with The ALS Association solidifies our clinic's ability to provide state-of-the-art diagnostic and therapeutic options for our PALS (people with ALS),” Bedlack continued. “It will help us stay on the cutting edge as these options change and improve, toward the day when we finally have a cure."
Duke Hospital was named one of America’s best hospitals in 2008 by U.S. News & World Report.
“It is great to have the Duke ALS Clinic as one of the Certified Centers,” said Sharon Matland, vice president of patient services of The Association. “The clinic has done a wonderful job in meeting our rigorous guidelines for offering the gold standard in ALS care.”
The Association’s Jim “Catfish” Hunter Chapter in North Carolina works very closely with the clinic and has helped the clinic grow from one physician and physical therapist to include a nurse practitioner, an additional physical therapist, occupational therapist, speech therapists, assistive technology specialist, a neuropsychologist, respiratory therapist, equipment vendor and nurse. The team received a major boost when a full time coordinator and social worker joined the staff.
“Dr. Bedlack and his team of experts are held in high regard by so many coping with ALS and we consider it an honor to support and have a partnership with them,” said Jerry Dawson, president and CEO of the chapter. “Duke is consistently ranked near the top of all hospitals in the U.S. and their ALS clinic now joins the esteemed certified center status. We are extremely proud of them.”
People with ALS who receive care from the clinic receive the latest disease modifying therapies to slow progression, are provided a wide range of options for dealing with symptoms, and because the clinic has become active in ALS research, are given the opportunity to participate in clinical trials.
The clinic, always on the lookout for new therapies, is conducting its own ALS pilot research program which has included a drug trial (levetiracetam), translational biomarker study (HDAC4), and epidemiology studies (using the National Registry of Veterans with ALS). As members of the Northeast ALS Consortium and the national ALS Research Group, the clinic has participated in multiple clinical trials.
The mission of The Association’s Center Program is to define, establish and support a national standard of care in the management of ALS. The objective of the program is to encourage and provide that state-of-the-art care. More than one-third of The Association’s Centers of Excellence have been certified in the last two and one-half years.
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The ALS Association's mission is to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support. Click here to contact your local chapter, certified center or clinic.
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