GETTING AGGRESSIVE ABOUT CARE — Talking With ALS Center Co-Director Greg Carter

Greg Carter

Carter earned his medical degree from Loyola University in Chicago in 1986. He finished his residency training in physical medicine and rehabilitation at the University of California at Davis in 1990 and undertook further graduate training as a neuromuscular disease postdoctoral research fellow at the National Institute on Disability and Rehabilitation Research in Washington, D.C., from 1990 to 1991. He came to Seattle in 1994.

Carter continues to see patients at the MDA clinics at both the University of Washington and at Providence St. Peter Hospital in Olympia, Wash.

Q: I note that you’re not a neurologist. How do you think that affects your perspective on ALS?

A: I’m what’s called a physiatrist [pronounced fizzy-AT-rist]. Physiatrists have a different perspective from neurologists, although we, of course, have several disciplines here. Michael Weiss, the other co-director at the MDA/ALS Center here, is a neurologist.

I think the multidisciplinary model is the best way to take care of ALS patients. I’m a big supporter of the ALS center model. If they have that aggressive type of care, patients with ALS can have a relatively good quality of life.

Unfortunately, I think that the ALS patient population has for a long time not necessarily received all the care they could have

Q: What do you mean by "aggressive" care?

A: There have been a lot of advances in the care of ALS patients, particularly in the area of noninvasive ventilation [breathing assistance]. And there are a number of other things along those lines, such as suction machines, the in-exsufflator and so forth [to clear secretions].

There are also some good medications to manage symptoms, such as spasticity. I like to use baclofen [brand name Lioresal] or tizanidine [Zanaflex].

And there are good medicines to manage pain. There are the long-acting narcotics, and I see a potential role for cannabinoids, of which there are 60 different active forms in marijuana. This is an area that I and my colleagues here are currently researching.

[The legal status of medical use of cannabinoids is uncertain. One legal product, dronabinol (Marinol), is available, although Carter feels it contains one of the least therapeutically effective cannabinoids.]

Antiepileptic medications can be used for pain. Neurontin [gabapentin] is very effective and is a very safe compound. It was actually tested as a possible treatment for ALS but did not prove effective in that regard.

Q: It’s often said that people with ALS don’t have pain. Are you saying that’s not true?

A: I have found that ALS patients do have pain. The pain is not necessarily a direct result of the disease itself. It’s probably related to spasticity and immobility.

I think it can be treated, but it’s often overlooked. First it has to be acknowledged by the clinician. People have traditionally said that this isn’t a painful disease, so pain issues are sometimes never really addressed.

Q: Do you see depression in people with ALS?

A: I do. I think most patients with ALS probably are depressed whether they admit it or not. If one doesn’t experience some level of depression, then one hasn’t really accepted the diagnosis.

The newer antidepressants work very well for depression, and I think depression is expected in a diagnosis of ALS.

Q: Some people might describe themselves as sad, but not depressed.

A: I don’t try to split hairs between depression and sadness. These medications are safe and can help with sadness as well as depression. They affect mood.

ALS patients can also have emotional lability, which is laughing and crying too easily. You have to sort those things out, but just because someone has emotional lability is no reason to say they’re not depressed. They could have both.

Q: What medications do you use to affect mood?

A: I like the selective serotonin reuptake inhibitors, or SSRIs. But amitriptyline [Elavil, others], which is an older antidepressant of the tricyclic type, has some effect on emotional lability and some beneficial side effects, such as causing a dry mouth. It also helps with sleep.

Clinicians should look for depression and treat it aggressively, whether it’s frank depression or just sadness.

Q: Are there nonmedication approaches to pain or depression that you recommend?

A: Yes. For emotional well-being, I strongly encourage participation in support groups, as well as group and individual counseling, with involvement of family members and caregivers.

You also need supportive equipment, such as a wheelchair that fits properly, proper padding, back support, a pressure relief mattress for the bed, properly fitted braces if the patient is still walking, and a daily, gentle exercise program. Exercise has a natural mood-elevating effect as well as an analgesic [pain-relieving] effect. [See "Exercise Has Many Benefits."]

Q: I notice that you’ve written a lot about "quality of life" issues in ALS.

A: Until a cure for ALS is found, improving the quality of life is what we’re in business for. All clinicians should think, "What is the impact of what I’m doing on the quality of life for these patients?"

Q: For many people, the quality of life is affected by fears about death. Can you talk about that?

A: It’s an extremely important area that should not be overlooked. I’m a big supporter of the hospice concept

Hospice isn’t necessarily a place; it refers to a modality of care. Hospice care can occur in any setting — the home, an assisted living facility, a nursing home or an inpatient hospice building. Hospice means 24-hour-a-day access to nursing care, pain management and comfort measures of any sort. Most hospice care occurs in the home. [For information about Medicare hospice programs, go to www.medicare.gov and search for "hospice"; or call (800) 633-4227.]

In order to go into hospice, you have to not be seeking life-prolonging treatments. Most ALS patients will reach that point if they’re educated, which is critical.

Q: What do you think of current research findings, such as the one about the possible role of lipids in ALS [see "Researchers Probe Role of Lipid Overload"]?

A: I think that’s a downstream effect. We’ve got to get upstream. We need to find the root cause of the pathophysiology of ALS, which I think will turn out to be genetic defects, and we need to more clearly define the environmental triggers, the stressors, in ALS.

Ultimately, I think we’ll discover that ALS is like many cancers. There’s a genetically susceptible population, which may or may not get the disease. Exposure to an environmental stressor, such as pollution or a virus, may trigger a defective gene to "turn on," or perhaps it "turns off" a vital gene, and this may produce the disease.

Top

Anthony Vitale, Pioneer of DECtalk, Dies After 9-Year Battle With ALS

Anthony Vitale

Anthony Vitale, a Northborough, Mass., linguist who was honored as MDA’s 1996 National Personal Achievement Award recipient, died Aug. 5 after nine years of living with ALS. He was 57.

Vitale, who is survived by his wife, Jeanine, was known for his pioneering work as a linguist.

While working for Digital Equipment Corp., he helped create DECtalk, computer technology that turns text into human-like speech. Ironically, Vitale himself used the DECtalk system when ALS began to affect his ability to speak.

After receiving a diagnosis of ALS is 1993, Vitale continued to work at refining the computer system for as long as he was able, and took advantage of his unique, "insider’s" view as a user of the assisted communication invention.

A Fulbright scholar who earned his doctorate in linguistics from Cornell University, Vitale visited and taught in many exotic countries.

He was fluent in six languages, including Swahili, and wrote a teach-yourself-Swahili course that’s still used in universities.

Top

Exercise Has Many Benefits for People With ALS

A reputed link between ALS and athletics shouldn’t deter people from exercising, including those who have the disease, experts say.

In April, neurologists at Columbia Presbyterian Medical Center in New York reported that ALS patients seen in their practice had a tendency to be slim throughout life and involved in varsity athletics during their youth (see Athletics and ALS, June 2002). In September, their study was published in Neurology.

"Thousands and thousands of slim athletes never develop ALS. Why a tiny few of them do develop ALS is still unknown," wrote the team of neurologists led by Lewis Rowland, who served as director of the Eleanor and Lou Gehrig MDA/ALS Center at Columbia from 1987 to 2000. "Nothing in our data should be construed as evidence that patients with ALS should not exercise," they emphasized.

Despite those assurances, the study has raised concerns among people with the disease. In online chat rooms and bulletin boards, many have asked whether exercise will delay the course of ALS or hasten it.

Overwork vs. Disuse

Much of the concern stems from speculation that intense physical training of the kind endured by athletes might somehow stress the motor neurons, the muscle-controlling nerve cells targeted by ALS. There’s little evidence for that idea, either as a cause of ALS, or a factor in its progression.

But there’s evidence that "overworking" the motor neurons plays a role in polio, a viral disease that attacks motor neurons and causes ALS-like symptoms.

Some reports suggest that people infected with polio during the epidemic of the 1950s were likely to fare worse if they exercised during the early stages of illness. Others suggest that post-polio syndrome, a relapse of weakness many years after recovery from polio, occurs because motor neurons that survive the infection get burned out from compensating for their lost comrades.

Greg Carter, who co-directs the MDA/ALS Center at the University of Washington Medical Center in Seattle (see "Getting Aggressive About Care"), believes that overwork weakness is a danger for people with ALS, but that it shouldn’t stop them exercising.

"You need to use common sense," says Carter, a specialist in physical medicine and rehabilitation. "I’ve had ALS patients who just want to hit the gym and beat the disease by pumping iron. You can’t do that and you may end up worse off."

Moderate exercise can prolong mobility, elevate mood, help prevent pain and improve quality of life, he says. Some research suggests that it might also help protect against oxidative stress — a buildup of oxygen-based free radicals — by stimulating the production of antioxidants naturally present in the body.

Lisa Krivickas, an assistant professor of physical medicine and rehabilitation at Harvard Medical School and Spaulding Rehabilitation Hospital in Boston, says that in ALS, disuse weakness is a potentially bigger problem than overwork weakness.

Just like anyone else, people with ALS are likely to decondition their muscles if they don’t exercise, she says. "My advice for ALS patients is to exercise moderately while their muscles are still strong … the idea being to maintain strength before you lose motor neurons."

Do It, Just Don’t Overdo It

So, what kinds of exercise are appropriate for people with ALS?

Have you seen "Facts About ALS"?

For those who are still ambulatory, Carter recommends walking, swimming and stationary bicycling. Real bicycling or any other activity that involves a serious risk of falling should be avoided, he says.

In a study published last year in the Journal of Neurological Sciences, scientists at Tel Aviv Sourasky Medical Center in Israel studied the benefits of moderate aerobic exercise in 25 people with ALS.

About half the study participants were assigned a daily exercise program of walking, stationary bicycling or swimming for 30 minutes or less, and the other half were told not to exert themselves beyond their usual daily requirements.

After three months, the exercise group scored better on measures of general function and spasticity (muscle spasms) than the control group.

Excessive "pumping iron" aside, light weightlifting can be safe and beneficial for people with ALS, Krivickas says.

"There are not well-controlled scientific studies of strength training in people with ALS. But studies of people with more slowly progressive neuromuscular diseases suggest that strength training is not harmful, as long as you avoid high resistance and eccentric [lengthening] contractions," she says.

"If you’re doing curls to work out your biceps, the eccentric phase is when you bring the weight down from your shoulder," she explains. Lowering the weight slowly and prolonging that phase, as body builders sometimes do, will probably cause more harm than good for someone with ALS, she says.

Krivickas gives regular consultations at the MDA/ALS Center at Massachusetts General Hospital in Boston.

"I tell patients if you want to go to the gym, pick a weight where you can do 20 repetitions, but don’t do 20 in a row. Do 10 to 12 so it’s a submaximal weight."

If you feel weak for more than 20 minutes after exercise, you’re overdoing it, she says.

The most important rule to follow when exercising, Krivickas and Carter say, is to establish a program that’s individualized to your needs and abilities.

Don’t push yourself too hard, avoid exercises that pose an obvious risk of injury, and work closely with a rehabilitation specialist or physical therapist who can recommend adjustments to your program as your abilities change.

Top

ALS Research Roundup

A new study casts doubts on the versatility, or plasticity, of bone marrow stem cells, but MDA scientists say the cells still hold potential for repairing nerve cells damaged by ALS.

Findings in the late 1990s that bone marrow could generate nerve cells, muscle fibers and other cell types raised hope that bone marrow transplants could be used to treat ALS and other degenerative diseases.

In the new study, published online by Science last month, researchers isolated single hematopoietic (blood-forming) stem cells from the bone marrow of mice, and injected them into mice whose own marrow had been destroyed. The injected cells, marked with a green-glowing protein that was passed to offspring, regenerated the recipients’ bone marrow but almost never formed cells in other tissues.

The study detracts from the hope for the therapeutic potential of stem cells from adult bone marrow, say its main authors, Irving Weissman and Amy Wagers of Stanford University School of Medicine in California.

"I hope it tempers the enthusiasm for adult stem cell plasticity. Maybe it’s not the answer that it appeared to be," said Wagers in a Stanford press release.

But Louis Kunkel of Children’s Hospital in Boston argues that Weissman’s experiments simply may have failed to bring out the plasticity of bone marrow stem cells.

"The major flaw is they didn’t create a niche for the cells," says Kunkel, a member of MDA’s Scientific Advisory Committee. Healthy tissues probably don’t attract bone marrow stem cells, but diseased tissues can send them into repair mode, Kunkel explains. In a 1998 study, he showed that bone marrow injections could generate new muscle fibers in mice with Duchenne muscular dystrophy.

Stanley Appel, a member of MDA’s Medical Advisory Committee and director of the Ronny and Linda Finger MDA/ALS Center at Baylor College of Medicine in Houston, points out that Weissman was working with a distinct subset of bone marrow stem cells.

"When you do an ordinary bone marrow transplant, you’re passing a lot more than just hematopoietic stem cells," Appel says.

Appel is conducting a clinical trial of bone marrow transplantation for ALS, hoping the cells will slow the disease by suppressing inflammation (see "Baylor Center Director Tries Transplanting Bone Marrow in ALS," September 2002).

But "the ultimate goal is to use bone marrow stem cells to replace neurons," he says. "I don’t think [Weissman’s] data invalidates that approach."

Researchers Probe Role of Lipid Overload

High levels of two kinds of lipids (fatlike substances) have been found in the spinal cord motor neurons of people with ALS and of mice with ALS, says a study published Aug. 22 in the online edition of Annals of Neurology.

Mark Mattson of the National Institutes of Health in Bethesda, Md., and Johns Hopkins University in Baltimore led the study team, which included Jeffrey Rothstein, who directs the MDA/ALS Center at Hopkins.

The high lipid levels could contribute to cell death in ALS, the researchers say, through oxidative stress, a known contributor to cell death in ALS that involves the actions of metabolic byproducts called free radicals. Other mechanisms could also be involved, they note.

The excess accumulation of ceramides and cholesterol esters occurs because of oxidative

Lewis Rowland

When the investigators blocked lipid formation in laboratory containers with a chemical called ISP-1, they were able to save motor neurons. Mattson and colleagues are investigating the effects of blocking lipid formation.

While lipid blocking may not get at the "root cause" of ALS, it could still be helpful in treating the disease, said Lewis Rowland, former director of the MDA/ALS Center at Columbia Presbyterian Medical Center in New York. Rowland was skeptical about the effectiveness of fat-limiting diets in ALS, however.

MDA plans to investigate further the question of lipid toxicity in ALS.

Insecticide Exposure in Corn Belt Under Study

Naomi Bienfang, a graduate assistant at the University of Northern Iowa in Cedar Falls, is conducting a study of the possible correlation between exposure to possible environmental toxins, particularly an organophosphate insecticide, and the occurrence of ALS. The study will focus on residents of the U.S. Corn Belt region, including Iowa, Illinois and Eastern Nebraska.

Bienfang is seeking a total of 40 people from that region who have ALS and 40 to 80 people who don’t have ALS. Participants will donate blood samples and fill out exposure surveys. The blood samples will be tested for how they react to varying doses of an insecticide, and the two groups compared.

The control group participants can be spouses, friends or neighbors who have been exposed to the same environment as the person with ALS but not genetic relatives.

Bienfang’s research adviser is Catherine Zeman, who has a doctorate in preventive medicine with an emphasis in environmental and occupational health. Bienfang and a nurse will travel to participants’ homes to draw the samples and administer the survey.

For more information, contact Bienfang by e-mail at nomeinroma@yahoo.com or by phone at (319) 273-3689. Zeman can be reached by e-mail at catherine.zeman@uni.edu

Top

Free Telephone Service Offered for Those With Speech Difficulties

A free telephone service called Speech to Speech (STS) makes it possible for people with hard-to-understand speech to make and receive telephone calls.

STS is mandated by the Federal Communications Commission and is provided in each state through the TTY relay used by people with hearing impairments. Unlike TTY, which requires typing, STS enables people to communicate by voice through a trained communication assistant who repeats the speaker’s words exactly in a three-way phone call.

The service is available in English or Spanish. For more information, call (800) 854-7784 or (916) 263-8689 and ask for Bob Segalman, or visit the Web site at http://www.stsnews.com

Top

Take Falls Seriously to Prevent Further Injuries

There was a period of time last year when Ira Anderson was "falling ridiculously all over the place." Reluctantly, he agreed to get a cane and found one with an ornate carved metal handle "that matched my personality."

Unfortunately, the cane made a better fashion accessory than a fall-prevention device. An uneven surface or misjudged step still put Anderson on the ground.

"I would find myself lying in the street, unable to get up, with nobody around," says the 55-year-old financial consultant from Fords, N.J., who learned last year that he had ALS. "That convinced me that I had to go to the next step, a walker."

Anderson’s wife, Marcia, and his physical therapist kept pressing him to use a wheelchair.

"I said to him, ‘You don’t have to use it all the time, just sometimes,’ but it was like he just couldn’t do that," Marcia Anderson says. "Maybe he felt that using it would be like admitting that he was getting worse."

In June, while coming home from an ALS support group meeting, Anderson was tired but refused Marcia’s offer of the chair. As he pushed his walker into the house, his "good" leg suddenly gave out and he twisted as he came down, snapping his ankle.

"After that I’ve been pretty much relegated to the wheelchair," Anderson says. "I’m trying to get a little strength back in my legs, but it’s very, very difficult getting back what I lost."

Causes of Falling

Falling is one of the earliest and most frustrating symptoms of ALS. Although most falls

Ira and Marcia Anderson

These injuries can lead to additional loss of physical ability, as in the case of Ira Anderson.

ALS causes falls in a number of ways. Leg weakness can lead to foot drop and tripping. Arm or neck weakness can cause balance problems.

Early in the disease, people often have "increased tone," meaning their muscles are stiffer and harder to control, which can also lead to falls, King says.

Muscle cramps "can put me down before I complete a single step," says Todd Allen, 38, of Chicago, who has Kennedy’s disease, a neuromuscular disease similar to ALS but with slower progression.

Another part of the problem is that the body is a creature of habit. "Often, people just make a move too suddenly," King says. "They’re doing something they’ve always done, like working in the kitchen and they turn quickly to grab something out of a drawer, and down they go."

Fall Prevention

Assistive devices like ankle/leg braces, canes, walkers, scooters and wheelchairs can help prevent falls — if you use them.

"Pride goeth before a fall," quotes King. "For many people, it’s worth the risk of a fall not

A walker can help prevent falls.

Simple home modifications are another prevention strategy. Eliminate throw rugs and dog toys scattered on the floor. Even out variations in floor height or add a handhold of some sort. Make sure furniture arms are sturdy enough to provide support when standing up.

"Anticipate a fall," King advises. "Look at your common pathways or places where you stand, like the kitchen, and do a ‘360.’ Ask yourself, ‘If I fell in this direction, what would I hit? How about this direction?’ Then remove sharp corners or whatever."

Falling Down/ Standing Up

One way to minimize injuries is to fight the instinct to stick out your hands to stop a fall, which can lead to arm or wrist injuries, Allen says. "I’ve never been severely hurt when I simply let myself go down, curling up or rolling to take the impact in the fleshier parts of my body such as the butt and shoulders," he notes.

Often the worst part of a fall is getting back up again. King tells horror stories of patients who have lain for hours before help arrived, sometimes soiling themselves.

Get used to carrying a cell phone or emergency assistance pager at all times, she says, and don’t feel funny about calling 911 for help. If you ask that the rescuers not use their sirens, they usually won’t.

Protective gear, such as the helmets, wrist splints and elbow/knee pads worn by roller bladers, also can provide some measure of protection. But if you’re falling frequently — i.e., at least once a week in different situations — "you have no business walking," King says. "The odds are good you are going to get a serious injury."

’Drop the Vanity’

Ironically, although Ira Anderson once "fought tooth and nail" against using a wheelchair, he now finds the chair has given him back his life.

He and Marcia have been able to resume activities once impossible when he struggled to walk — shopping, walking the dog, going to the park.

"People need to drop the vanity issue and not put up a fight," he says. "You have a situation where you’re unsteady, so do what you have to do to protect yourself. Don’t use up all your energy or stop doing things you used to enjoy.

"If a wheelchair helps you accomplish those things, go for it. It took me a long time to accept that, but now let me tell you, my chair is my lifeline. It has given me so much freedom."

Top

Home Rehabilitation Services: OT/PT Evaluation by Anne C. Clark, M.S., P.T.

People with ALS are often referred to an occupational therapist (OT) or physical therapist (PT) for a professional evaluation for home rehabilitation services. This article provides a checklist of items that a therapist may review to maximize benefits to you and your family or caregivers.

Sometimes private insurance will authorize an in-home evaluation for an insured person who’s considered "homebound." MDA also offers annual PT and OT evaluations as part of its clinic program.

Professional home evaluations can provide a heightened awareness of the home environment and its effects on your daily activities. OTs and PTs can offer alternative ways to perform daily activities safely with a minimum of energy. Since home visits tend to be a very limited service, it’s important that your home evaluation not only focus on today’s challenges but also consider your future needs.

The therapist may assess you and your home environment in these areas:

ROM and Strength Assessments

Range-of-motion (ROM) exercises are critical in maintaining joint mobility and muscle nourishment. By assessing your abilities, the therapist can instruct you and your caregivers in a home exercise program to help you maintain flexibility in joints such as the knees and exercise your arms, hands, fingers, legs, ankles and feet.

Limitations in ROM are important to note so proper stretching techniques can be implemented. Strengthening exercises aren’t recommended for muscles that already show weakness. (See "Exercise Has Many Benefits.") It’s important that ROM exercises become established and followed routinely, every day if possible. Don’t rely on the therapist to be the only person to assist you in performing these daily activities.

Mobility and Transfer Observations

Therapists can assess the strength, safety and efficiency of a patient’s physical ability. Oftentimes muscle weakness can make independent movements rather difficult, and transfer assistance may be helpful. Assistance can help the moderately independent person to conserve energy and maintain safety.

A transfer is defined as "getting from point A to point B." A therapist’s evaluation will provide you with alternative ways to perform various activities.

As an example, if you find it difficult to get up from the toilet, the therapist might recommend a technique that includes hand placements for support or a piece of equipment such as a raised toilet seat with arms or a 3-in-1 commode (a free-standing commode with a safety frame and raised seat).

Activities of Daily Living and Self-Care Interviews

The therapist can best assess your needs within your home by interviewing you and observing you performing various activities of daily living — getting in and out of the shower, climbing out of the bathtub, getting on and off the toilet, getting in and out of bed, climbing up and down the stairs, and getting in and out of the car.

It’s vital that a thorough assessment of these transfers be made to ensure the safety of each task. If the therapist finds that the safety of the patient or caregiver is compromised when performing transfers, he or she will recommend an alternative feasible solution.

Energy Conservation Evaluations

Many people with ALS report a significant decline in energy levels, and that leads to difficulty performing activities such as feeding, dressing, bathing and a daily self-care regimen.

For example, brushing teeth can be an exhausting ritual when done standing at the sink. Energy-conserving alternatives might involve using an electric toothbrush; sitting down to brush the teeth with an elbow resting on the sink lip; or moving the head to get to the back teeth instead of moving the whole arm.

It’s important to tell the visiting home therapist about tasks that are challenging to perform. A long-handled sponge to assist with bathing, a button hook device or the use of Velcro to help with dressing, and large-handled utensils for eating may be keys to maintaining independence in these activities over a longer period of time.

Conserving energy in these tasks is a key factor in maintaining quality of life.

Home Accessibility Appraisals

In appraising your home’s accessibility the therapist will assess how you enter and exit the home, move from room to room, and how you’d get out in case of an emergency.

The home therapist might review techniques for getting you and your walker up and down stairs, and/or recommend the purchase of additional assistive equipment. The therapist should also evaluate potential risks inside your home (i.e., scatter rugs, floor pillows, poor lighting, type of shoes) and recommend safe changes in potential problem areas. (See "Take Falls Seriously.")

Home Dimension Measurements

Measurements within the house may be necessary. These can include the width of the front, bedroom and bathroom doorways, as well as bedroom dimensions. Hallway width and corners can influence equipment recommendations.

Throughout the home evaluation, ongoing communication between you and your ALS care team is most important. The therapist will send a report to the referring physician. You should also be sure a copy goes to a member of your ALS team (neurologist, nurse clinician, rehabilitation specialist) so they can provide optimal services and follow-through. For further information please contact your local MDA office.

Adapted with permission from the newsletter of the Eleanor and Lou Gehrig MDA/ALS Center at Columbia Presbyterian Medical Center in New York. Anne Clark is a physical therapist at the center.

Top

Thanks to Jerry Lewis for Leading the Telethon

I watched your annual Telethon for the Muscular Dystrophy Association on Labor Day this

In June 2001, I was diagnosed with ALS. I have spent the last 15 months trying to work out all the emotions that have driven me, most of the time, to despair. What have I done to deserve this disease?

When I watched you on Labor Day, with medical problems of your own, it floored me that you still have the strength and the will to carry on your goal of helping others. After all these years of being a bystander, at 53 I now am one of "Jerry’s kids." You were raising funds to assist me in dealing with ALS. What more could a person ask than to have you step up to assist with the endless medical needs and to find a cure for this terrible disease?

I am so very grateful for everything the MDA has done for me and will continue to do until God calls my number. Jerry, I send you my appreciation, best wishes for your own fight with medical problems and lots of hugs (one can never have too many of those).

Pamela H. McDermott
Wake Forest, N.C.

Return to Issues Index