Although ALS has robbed Margit Robien of typical speech, she finds many ways to communicate: scratching notes on a pad of paper, writing with chalk on a slate board and connecting wordlessly with her ever-present smile.
While writing is the most effective way for her to express her needs today, she and her husband, Jerry, know that, as her fingers weaken from the disease, they'll need other ways to communicate.
| Margit Robien and Muffy
Enter the DynaMyte, a high-tech speech output device that the Woodriver, Ill., couple is learning how to integrate into their daily lives.
The lightweight, portable device (it weighs about 3 pounds) from DynaVox Systems allows Robien access to an extensive selection of words and phrases, or to program her own phrases.
She can then press buttons and the computer will speak the phrases in its synthetic voice.
MDA can help
The $6,500 device was paid for by the Robiens' insurance, but the couple was happy to hear that MDA announced in May that it will assist with up to $2,000 for the one-time purchase of a communication device such as a speech generator or speech synthesizer. (Editor's note: As of 2010, MDA will provide assistance with the repair of such devices only.)
These aids, known as alternative and augmentative communication devices, are covered by Medicare and by some private insurance policies.
"Anything that helps you communicate with others does enhance your life," said Robien, 56, who received a diagnosis of ALS in March 1999.
"Not being able to talk is frustrating and embarrassing. It is also dangerous. Anything that can be done to help is of great value to the handicapped person."
Personal — and even bilingual
Robien's machine boasts keystroke-saving features like word prediction, in which the user types the first few letters of a word, and then the machine presents a list of words that the user likely wants.
The DynaMyte, one of several such devices on the market, also allows users to customize category buttons, which are designed to give quick access to common phrases and words relating to these topics. Robien has categories such as conversation, food, medical needs and care for her dog. There's also an emergency feature if she needs to dial 911.
"We programmed several emergency messages, such as 'send the police' or 'send the paramedics.' We also added the statement, 'I am voice impaired' so they would not get confused," Robien said.
Robien said she finds her DynaMyte most useful for communicating at home or when riding in the car. She's even created a way to make it "speak" phrases that sound like German, her native tongue.
For example, the Robiens programmed a version of the phrase "Wie geht es Dir?" which means "How are you?" by piecing together letters to make the sounds that mimic the sentence: "Vee gayt es deer?"
An active life
Communication is a vital part of the active life that the Robiens, who married seven years ago (each was previously divorced), continue to lead.
"She has a very lovely garden in the back yard, and she has a water garden with a lot of nice fish in it," Jerry Robien said.
Jerry, a retired chemist who worked with Amoco Oil for 35 years, said his wife is a "very upbeat lady, and always has a smile, so she makes the best of it."
"Making the best of it" means enjoying her 13-year-old grandson, Brandon, who is her "pride and joy."
She also enjoys traveling to visit family in her hometown of Heidelberg, Germany. Robien, who uses a walker and sometimes a manual wheelchair, doesn't shy away from air travel.
"She goes yearly. In fact, we think she should go as long as she can," said Jerry Robien, who said he usually stays home to baby-sit Margit's dog, Muffy.
In addition to their own positive attitudes, the Robiens find helpful support and comfort from 10 other families facing similar challenges at an MDA support group for people with ALS.
Margit attends clinic at the MDA/ALS Center at Washington University School of Medicine in St. Louis.
Putting a plan in place
MDA referred the Robiens to speech pathologist Jeff Edmiaston, who recommended that they seek an advanced augmentative communication device while they had time to become comfortable with it, Jerry Robien said.
Edmiaston and other medical professionals handled most of the paperwork and insurance hurdles to secure funding for the device, he said.
The Robiens advise others with ALS to explore the possibility of getting an augmentative communication device — and the earlier the better.
"The time is going to come when she can't write, and then it's going to be really important that we have the DynaMyte here," Jerry said.