ALS Doesn’t Masquerade As Lyme Disease, Experts Say

Recent items in The ALS Digest, an online publication, have suggested that the tick-borne, bacterial infection known as Lyme disease can mimic ALS and that new tests can tell the difference between these conditions with certainty.

But can this infectious disease actually be confused with ALS? And, if you do get a positive result on a Lyme test, can you be assured you don’t have ALS?

Not likely, experts say.

Reducing Caregiver Stress May Help Loved One’s Depression

Depression is common among ALS patients at all stages of the disease and becomes worse when the primary caregiver is overburdened, according to a 2001 survey of 2,576 people with ALS.

The ALS Patient Care database is a large-scale "report card" on how U.S. physicians treat ALS and how people with ALS experience their illness and health care.

Protection and Prevention Are Keys to Comfortable Skin

People with ALS need extra care to keep their skin healthy and comfortable.

First, there are the changes wrought by the disease. Skin becomes extremely fragile whenever there are nutrition or breathing problems. ALS also seems to change the biochemical properties of collagen and elastin, which run in thin fibers through the middle layer of skin called the dermis. As ALS progresses, these fibers become irregular in size and shape. Blood vessels in the dermis also display irregularities and protein deposits.

All Fall Down

Some people have nightmares about falling off cliffs. Brad Williams has nightmares about falling — period.

“Whenever I’m walking, falling down is always the major thought on my mind,” says Williams, 39, of Alexandria, Va. “It has to be on my mind a lot for me to be dreaming about it.”

Williams has Miyoshi distal myopathy, a slowly progressive form of muscular dystrophy that primarily affects the extremities. He hosts an MDA Internet chat under the nickname “dysf,” and notes that other chat participants also have reported falling nightmares.

Keep Talking with Technology

People with ALS quickly become familiar with a wide world of durable medical equipment that can range from walkers and wheelchairs to ventilation equipment.

Within this equipment array are devices for augmentative, alternative communication (AAC): equipment that can enable people to communicate if they’re unable to speak.

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.

Home Rehabilitation Services: OT/PT Evaluation

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.

It Takes a Village to Fight the System

When David Jayne took up his sword against Medicare two years ago, it wasn't a solitary fight. The support and backing of the members of his Circle of Friends care team, and the organization he founded, National Coalition to Amend the Homebound Restriction (NCAHB), made his crusade possible.

Book Addresses Kindness and Caregiving

Counting on Kindness: The Dilemmas of Dependency, by Wendy Lustbader, 1991, 206 pages. Free Press, (206) 985-5400, www.lustbader.com.

Lustbader, a medical social worker, has taken a unique look at caregiving — from the perspective of the person receiving the care. Her book is valuable both for people who find themselves having to "count on kindness" for survival, and for caregivers who may be struggling with their own roles in changed relationships.

Tips for Caregivers: Handling a Loved One's Depression

Many people with ALS maintain an amazingly upbeat attitude, but even the strongest people get down sometimes. If depression is becoming a concern, consider some of these strategies from experienced caregivers:

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