Recent content by ckck

I had a similar a problem with my mask(s). The whistling was coming from the vent on the mask by the nose when it got wet. I keep a microfiber towel near and wipe it off when it starts to whistle. In terms of the face seals, I fight those a lot as well no good answer on that from my end...

I do not presume to know all the ways bulbar onset manifests itself, but you experience does not match what I went through. My very first indication was speech impairment, followed by swallowing difficulties. I did have significant tongue fasciculation's. The swallowing difficulties are a...

I whole heartedly agree with all that Laurie has said. I too cannot speak, swallow, or participate in family events. What I can say and would not presume to speak for your sister, is that although I don't engage in family conversations much I do enjoy listening to family members talk. Part of...

I lost my speech completely before I lost the ability to eat. I use several applications for text to speech, still run errands and still drive as I am as yet fully mobile. There are threads on applications, I use predictable. If weight loss has started, it becomes difficult to reverse without...

Everyone makes their own choice with regards to feeding tubes. I waited until I could wait no longer, lost about 60 pounds. I thought I could force myself to eat enough by mouth to stop the weight loss. Wrong, I cannot out engineer ALS. Anyway I was getting more fatigued. Got the tube and...

Perhaps she is more comfortable typing on the iPad and then just showing the writing to another person rather than having the iPad speak. I have been without voice for about a year and typically I will type on my phone/iPad and just show it to a person and let them read it. It is easier when...

I would recommend any voice bank he is able to do. My voice has been gone well over a year, and my family members have commented that they cannot remember what I sounded like and they miss it. Good luck. Ken

Jennanne, I know the shock is real and overwhelming. I too am bulbar onset with diagnosis in November 2014. I too thought I had suffered a minor stroke and pursued that avenue, before recognizing that I my disease was different. While everyone progresses differently I concur about a second...

My PCP advised me that if you use Miralax or a like product you can titrate up or down the amount you use so that every thing works "normally." Ken