For people with ALS with severe hand and arm weakness, using a conventional telephone can be an exercise in frustration. But, there are equipment alternatives that can assist you.

Although many assistive features are standard on today’s phones, such as memory speed dialing, one-touch dialing, speakerphones and voice-activated systems, various additional adaptations and accessories are also available.

Telephone access made easier

At first, the project was a way of staying occupied, coping with and fending off boredom.

But then the photographs began to come in, from people of all backgrounds, all around the world, eagerly responding to "this guy in a small New England town."

"The project became more than a goal to meet,” says Fred Siwak. "It became a window on the incredible kindness of strangers."

Edward Kasarskis, M.D., Ph.D., is a professor in the Department of Neurology of the College of Medicine and the Graduate Center for Toxicology and Nutritional Sciences at the University of Kentucky in Lexington.

In 1998, he was part of an American Academy of Neurology committee that developed guidelines (a practice parameter) for ALS and is now studying the role of nutrition and assisted ventilation in this disease. 

Q: Why should you worry about good nutrition if you have ALS?

Gastrostomy tubes

When it’s time for a gastrostomy, or feeding, tube, you must decide on the kind of tube, tube size, feeding delivery options, type of food, and how you’re going to affix a tube to your abdomen.

Here are some helpful tips to consider when choosing the equipment that’s right for you.

PEG tubes and buttons

A PEG (percutaneous endoscopic gastrostomy) tube is the most common solution, as it allows you and your caregiver to administer nutrients directly to the stomach.

Angiogenin mutations likely boost ALS susceptibility

Mutations in the gene for angiogenin (ANG), a protein that aids in the formation of new blood vessels, are new suspects in ALS susceptibility, says a multinational research group whose findings were published online Feb. 26 in Nature Genetics.

Guests were touched when Ken James burst out crying at his surprise birthday party — but grew concerned as he kept crying and crying. “I boo-hooed loud andfor the longest time,” says James, 66, via e-mail from Marshville, N.C. “I couldn’t help it. Surprises aren’t for ALS patients. [Wife] Deloris explained that crying just went with ALS.”

The experience of every person with ALS is different; every person with ALS is the same. Every account of the experience of ALS is worth telling; everyone affected by ALS will find some truth in the story. This is the first in a series of occasional articles chronicling one man’s journey with ALS. Sam Goldstein and his wife, Jo-Ann, have graciously agreed to share their experience of living with the disease.

My first trip

Does this imaginary conversation sound familiar?

Expert Advice Giver (EAG): (pompously) Caregivers must take time for themselves on a regular basis to maintain the physical and mental health necessary to do their demanding jobs.

Caregiver: (snorts) Yeah, right. Time off doesn’t just happen — it takes planning, scheduling, and training somebody new. Who has time for that?