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Cover Story October 12th, 2006


 

  Untitled Document

hawking

by lyle e davis

It started out simple enough. Gary Babcock had some difficulty trimming his fingernails. He mentioned it to his wife, Joyce. She teased him a bit, “oh, we’re both getting a bit older. We’ll have more aches and pains as we go along;” never realizing that this was the first signal of problems with the nervous/muscular system.

Less than a year later, just before Christmas 2005 the diagnosis came back. Amyotrophic Lateral Sclerosis (ALS), more commonly known as Lou Gehrig’s Disease.

They’d had a good life. He met her in Minnesota when she was 19. He had graduated from the University of Nebraska and, following his military service commitment, leaving as a Captain, he became a successful geologist, running around the various oil and mineral fields and discovering natural gas pockets.

They’ve been together now for 41 years. They raised their family of a son and daughter . . . they were happy and ready to grow old together. Then ALS hit.

He is confined to a motorized wheel chair. His mind is sharp and he can talk . . . but that's about it. His company has him on the payroll and still consults with him and he has his medical benefits so that is of great comfort to the family.

“I’m not in any pain,” Gary says. “It’s just that my muscles don’t work. It really sucks.”

Joyce attends support groups and it seems to be helpful. Thanks to a caregiver, she is able to get out two or three evenings a week. This is important as many of us are well aware that the burden on a caregiver is often equal to, if not greater than that of the patients of most any catastrophic disease. It's very important that they have a break from time to time.

My two sons have a good friend, 42 year old Gus Fleming, who also came down with ALS. They were surfing buddies.

In the winter of 2004, Gus noticed that he was falling off his surfboard, losing his balance even on the most basic of surfing procedures. Soon, he began seeing a doctor and commenced the endless series of tests one goes through before the diagnosis is confirmed. After a year of testing and multiple exams and opinions, he was diagnosed with ALS in November of 2005. He has a good job with Hunter Industries of San Marcos as an outside salesman for the past 10 years of his 20 years with the company, but is now transferring to an inside sales position because he gets easily fatigued. Divorced, he is a single parent with two daughters, 14 and 12, and son, nine.

“The last two weeks, walking has become very difficult. Recently, I fell, hit my head, had to go to the Emergency Room for stitches.When the symptoms began to get more noticeable it started in my arms . . . my legs remained strong . . . I’ve always been an athlete . . . rode mountain bikes . . .went hiking . . but now my legs have been touched by ALS as well and they are feeling the weakness. I have no particular exercise regimen . . . I just got approval for OT (occupational therapy) and PT (physical therapy) . . . I just notice that I get fatigued more easily.”

In talking with Gus one is aware of his clear speech and good mind. Eventually, he will have difficulty talking as the facial muscles used for talking also become weak, but his mind will remain bright and alert.

Asked what will happen with his children when he becomes to weak to care for them:
“I just bought a house that’s only five houses away from my parents. They check on me every day, and the kids can help out. Hunter Industries is working with me . . they tell me I can work as long as I want to. Hunter helped to rehab my house, we’ll have access to voice assisted computer stuff. I have some savings, some 401K accounts, and I will qualify for some Social Security benefits.”

Gus has the equivalent of an AA degree in ornamental horticulture. He enjoys going for rides to the coast, looking at the surf, and attending sporting events.

He welcomed being profiled for this story because he wants more people to be aware of ALS, the impact is has on people . . . and that it is not all that rare of a disease.

He may have the type that progresses more slowly. As Gary says . . . "ALS is like snowflakes. No two are alike." His is a rapidly progressive type, Gus's may be a slower moving form.

She is a Registered Nurse and worked in a Extended Care Facility in a Management capacity for 10 years before retiring in December 2002. After retiring she developed a neurological disorder since that time and has progressively gotten weaker. She can no longer walk unassisted. She, too, has been diagnosed with Amyotrophic Lateral Sclerosis. Her rabbits and her friends have kept her going.

Sherry Ketzbeau: “My disease started in 1999 and before. I was never diagnosed officially until July 2002. When I was diagnosed I had already had significant loss in my left leg, my right leg, both hands and my speech was slurred. I began my disease when I noticed something being wrong with cramping in my left calf and toes at night. My left leg got weak and I was tripping before I realized I had foot drop. The weakness spread within the year to the right leg and then up to my left hand and then my right hand. My speech began to be affected in 2002. While I was looking for a diagnosis, I changed primary doctors twice and saw eight different neurologists. I was diagnosed with a pinched nerve in my knee and was told I would get better. I had over 7 EMG’s, 3 Spinal Taps, Myelogram, CT Scans, 3 total MRI’s, muscle and nerve biopsy, Bone scans, experimental exams at Mayo clinic, way too many blood draws for everything under the sun.

I had many, many bad falls through out the years. In the year of 2002, I slipped on the ice and fractured my right ankle. This was my good leg. I ended up in a cast for 2 months along with a wheelchair. Since I retired this year, I have seen my greatest decline. I suffered another bad fall in June 2003 when I was at the doctors office. I landed on the x-ray table and cracked some ribs on my left side. This really set me back. I became totally dependent for care due to the pain I endured. I sat in my wheelchair most of the summer. This pretty much weakened me, not to mention the trauma. It took a long time to regain the ability to transfer myself, walk again and dress myself.

I have found trauma, stress and depression to be of great importance to me since I have declined. I stay away from all three. Love, Faith and Hope, and I will add God, is what will keep me going and other PALS (patient with ALS). I try to enjoy nature and the little things that I missed while I was so busy working and going through every day quickly.

I could not face every day without my friends for support even though they live all over the world. I have lost friends here also to the disease. We stay in touch via email and the Internet.

I have had help with obtaining equipment from the MDA clinic. I always recommend them to any newly diagnosed PALS. A good ALS clinic is invaluable also. The clinics have a neurologist, therapists, dieticians, social workers, respiratory specialists that are all equipped to help ALS patients through the 43 stages. The MDA clinic has a loan closet where they can help loan you wheelchairs, hospital beds, communication devices and other items.

Thanks to so many friends I now have a handicapped bathroom with a roll-in shower. A beautiful room with windows all the way around. I sit here all day on my computer. I can see the peacocks from where I sit. I watch the deer come in to feed. It is a beautiful room. We also have a first floor laundry room now. I have a beautiful deck and ramp so I can roll outside.

Family and friends bring in meals. I now have caregivers. I would like them longer in the day, but who can afford that? I am no longer walking. My speech is gone. I can still stand after being lifted. I have my PEG tube now but still eating small meals. I am pretty dependent in all areas. My typing is down to 2 fingers. Neck and shoulders very weak and hard to hold my head up. My body has started to shrivel up and I look like an 80 year old in many areas. My hands are crippled looking. I am in pain a lot. ALS is painful and don't let anyone tell you its not. My husband does Range of Motion on me which helps with the bone and muscle pain. Massage is wonderful.

I know we all ask ourselves everyday, ”Why me lord?” I have found faith in GOD. We are never given more than God thinks we can handle. We all were strong before this disease. We now have to be even stronger than we were before. NEVER GIVE UP!"

Longevity statistics may be somewhat out of date because of changes in supportive care and technology. For example, British physicist Stephen Hawking has had ALS since the 1960s and is still able to write and practice his profession. When first diagnosed, at age 21, he was given two years to live. Three years later he graduated with his PhD from Cambridge University and is one of today's great physicists. It’s been 46 years since he was diagnosed. He is still recognized as one of today’s leading physicists.

What is Amyotrophic Lateral Sclerosis?

The word amyotrophic means "without muscle nourishment," and refers to the loss of signals the nerves normally send to the muscles. Lateral means "to the side," and refers to the location of the damage in the spinal cord. Sclerosis means "hardened," and refers to the hardened nature of the spinal cord in advanced ALS.

Everyone knows it as "Lou Gehrig's Disease," who died of ALS in 1941, but there are a lot more folks than Lou Gehrig who have been hit with this.

In Britain and elsewhere in the world, ALS is often called motor neuron disease, in reference to the cells that are lost in this disorder.

There is no cure for ALS. It is a terminal illness. Treatment focuses on relieving symptoms and maintaining an optimal quality of life. Treatment is based on individual therapy and the continual adaptation of medications. Riluzole (Rilutek®) is one of the few drugs effective against ALS and may prevent progression and prolong life for a few months or so.

While fatal, ALS is not contagious. For the most part, the battle is short, with 80% losing their lives within two to five years of diagnosis. While between 10 and 20% may live ten years or more, others end up lasting only a few months.

Fifty percent of patients die within three years of diagnosis; 20% live five years; and 10% live 10 years. Hospice care can provide comfort and dignity to patients and their loved ones.

It is a rapidly progressive neuromuscular disease that is characterized by degeneration of a select group of nerve cells and pathways (motor neurons) in the brain and spinal cord. This loss of motor neurons leads to progressive paralysis of the voluntary muscles. The heart is not a voluntary muscle, and therefore, remains unaffected by the disease. However, since breathing is controlled voluntarily by the chest muscles, death usually occurs when the chest muscles are no longer able to help the lungs achieve adequate oxygenation. Generally, there is little impairment of the brain or the senses.

In 85% of cases, ALS effects the lower portion of the spinal cord first. In these cases, muscle weakness, cramps and weakened reflexes effects the muscles in the arms and legs as the first signs of ALS. The rate of muscle loss can vary significantly from person to person with some patients having long periods with very slow degeneration.

ALS patients require a diet of high-energy foods that are easy to swallow. Patients may benefit from a nutritionist. If the patient is not able to maintain adequate nutrition, a percutaneous endoscopic gastrostomy (PEG), or feeding tube, is usually inserted.

Some ALS patients may also need pulmonary consultants and respiratory therapists to assist breathing. Fewer than 5% of patients use long-term ventilation support.

Depression is very common among ALS patients. Antidepressant medication and counseling can help patients and their families cope.

The Muscular Dystrophy Association is the world leader among voluntary agencies in fighting amyotrophic lateral sclerosis (ALS).

Since the early 1950s, when Eleanor Gehrig served as a national volunteer leader of MDA, the Association has led the effort to assist those affected by the disorder that takes its name from her husband.

MDA's ALS Division offers the most comprehensive range of services of any voluntary health agency in the nation, and leads the search for a treatment or cure through its aggressive, worldwide research program. As of early 2002, MDA has invested more than $135 million in its ALS program, and is committed to continuing to lead the fight.
What Causes MLS?

We don't really know what causes ALS, but we do know that it can strike any adult at any time. While the usual age at onset is between 45 and 65, people as young as 17 have been diagnosed in the past. Men are somewhat more likely to develop ALS than are women. Studies suggest an overall ratio of about 1.2 men to every woman who develops the disorder.

A thorough medical and family history and physical examination are the starting points of a neurologic workup. The person will undergo simple, in-office tests of muscle and nerve function.

If ALS is still being considered at this point, the next step is usually an electromyogram, or EMG. This test, which bears some similarity to the more familiar electrocardiogram (EKG), measures the signals that run between nerves and muscles and the electrical activity inside muscles to see if there's a pattern consistent with ALS. If there is, more tests will likely be ordered.
Additional tests may include imaging of the spinal cord and brain, usually by MRI (magnetic resonance imaging) scan, and sometimes a test of the fluid surrounding the spinal cord (spinal tap or lumbar puncture), which is performed by putting a needle into the back between two lower vertebrae.

ALS is difficult to diagnose. There is no specific test available that will either rule out or confirm the presence of ALS. Diagnosis is usually made through a 'diagnosis of exclusions.' Neurologists conduct those tests, thereby ruling out other disorders that may cause similar symptoms, such as strokes or multiple sclerosis and if nothing else is positive and yet the symptoms continue to worsen, ALS is often the reason.

Pain is not a major component of the disorder, although moderate pain can certainly occur as a result of immobility and its various complications.

Hearing, vision, touch and intellectual ability generally remain quite normal. Some experts believe that certain emotional changes may be attributed directly to the disease process, but in such a devastating disorder as ALS, it can be difficult to distinguish feelings due to the underlying disorder from those that result from the person's situation.

In ALS, upper and lower motor neurons degenerate. Upper motor neurons normally send signals to lower motor neurons, which send signals to muscles.

The lower motor neurons are directly attached to muscles through "wires" called axons. Bundles of these axons leave the spinal cord and extend out to the muscles. It's these bundles that doctors are referring to when they talk about the "nerves."

The function of lower motor neurons is straightforward. They send "go" signals to muscles. When these cells gradually die, as in ALS, muscles become progressively weaker and eventually unable to move (paralyzed).

What Can Be Done About ALS?

Because ALS frequently takes its toll before being positively diagnosed, many patients are debilitated before learning they have contracted ALS. The disease usually does not affect the senses - taste, touch, sight, smell, and hearing - or the mind. ALS wreaks a devastating effect on patients as well as their families. As they cope with the prospect of advancing disability and eventually death, it consumes their financial and emotional reserves. It is a costly disease in its later stages, demanding both extensive nursing care and expensive equipment.

Although ALS research is proceeding at an unprecedented pace, only one medication has been found to be somewhat effective against the disease and is approved by the U.S. Food and Drug Administration as an ALS treatment. That medication, riluzole (brand name Rilutek), has a modest effect in prolonging survival.

Until a definitive treatment or cure is found for ALS, MDA clinics and centers use a team approach to patient care that mobilizes a variety of health care professionals, all of whom aim to alleviate symptoms, maintain function and independence, prolong life and offer guidance for those with this disorder and their families.

Preserving Communication

For many people with ALS, the loss of mobility and strength is less distressing than the loss of the ability to speak. This may occur as the muscles in the mouth and throat that control speech and the muscles that help generate the pressure that moves air over the vocal cords lose power over time. For this reason, speech therapists, or speech-language pathologists, are vital members of the ALS care team.

Emotional and Intellectual Life

Although ALS shortens life, it doesn't have to destroy it. An enormous number of people with ALS have rich emotional lives with their families and friends, continue with existing careers or interests or find new ones. People with ALS are artists, writers, readers, computer specialists, physicists, physicians, parents, lovers and poker players.

Many people with ALS — sometimes to the surprise of health care professionals and co-workers — maintain a sense of perspective and humor.

Antidepressants are often prescribed in ALS, but not everyone needs them. Counseling of various types is an option, as are stress reduction activities, such as meditation.

Many people with ALS and their families find support groups or Internet chat groups useful.

What Causes ALS?

Years ago it was widely believed that there might be one cause to explain all cases of ALS. Today doctors and scientists know that can't be the case. Together they're working to identify the multiple causes of the disorder.

The 1993 finding of the SOD1 gene that underlies some cases of ALS opened a window on ALS. Scientists have concluded that the two types of ALS involve common biochemical and physical changes in the motor neurons. Several clues to ALS causation have emerged since the early 1990s, and most experts believe these clues are linked to each other.

Stem Cell Research

Another focus of MDA research is stem cells, primitive cells that can be programmed to generate specific cells the body needs. Early studies show that stem cells may have the potential to replace or repair motor neurons damaged by ALS. Scientists are now exploring the safety and practicality of this approach.

• • • • •

Sources:

The Muscular Dystrophy Association
ALS Division
1-800-572-1717
Dystrophy Association
3300 E. Sunrise Dr.
Tucson, AZ 85718-3299
http://www.als.mdausa.org/
www.als.ca/events/general_faq.aspx?e=7
lindenwoods.tripod.com/als.html

 

 

 

 

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