March 12, 2009


I've posted before about my mom having Progressive Bulbar's Palsy / ALS (Lou Gehrig's Disease)

*Prognosis for PBP patients is poor. Progressive bulbar palsy symptoms can include progressive difficulty with chewing, talking, and swallowing (Merck 2005). Patients can also exhibit reduced gag reflexes, weak palatal movements, fasciculations, and weak movement of the facial muscles and tongue. In advanced cases of PBP, the patient may be unable to protrude their tongue or manipulate food in their mouth (Campbell 2005). Patients with early cases of PBP have difficulty with pronunciations, particularly linguals and velars, and may show problems with drooling saliva. If the corticobulbar tract is affected a pseudobulbar affect with emotional changes may occur (Merck 2005). Because PBP patients have such difficulty swallowing, food and saliva can be inhaled into the lungs. This can cause gagging, choking, and increasing the risk of pneumonia (Merck 2005). Death, which is often from pneumonia, usually occurs 1 to 3 years after the start of the disorder.


PBP is aggressive and relentless, and there are currently no treatments for the disease (Merck 2005). However, early detection of PBP is the optimal scenario in which doctors can map out a plan for management of the disease. This typically involves symptomatic treatments that are frequently used in many lower motor disorders.*

She continues to be independent in spite of the increasing weakness and the severe difficulty with speech. I have been in search of a devise that will allow her to type to speak. This has not been an easy search. In general, people do not understand what I'm looking for and they want to sell me a voice amplifier. Why would we want to amplify a voice that is not understandable?

This brings me to DynaVox and the DynaWrite (pictured below). If you know anyone who has used this product or a similar product, will you please tell me about it?



Kei42 said...

I have no experience with that device, although we were looking into getting one for my mother, if she'd gotten to the point of needing one. Unfortunately, she didn't need it. She passed away on February 2nd. My thoughts are with you and your family, ALS is such a heart-wrenching disease. I will keep you all in my prayers.

Squirt said...

I am familiar with a similar device. We used one to help my son communicate. He has Autsim & his DynaVox was a huge help getting him to be more verbal!
Please email me & I can tell you a little more about it.
lilsquirt13 (@)