Recent content by LookingAround

I don't know that there ARE current articles to point to the frequency of PLSers in their upper 20s. I know it happens but it is less common than in older adults (it's all about the statistical bell curve). If you are still seeking information, I too would recommend the Research Group on Motor...

A search indicates you are THE person to help me with the settings on my new AVAP. It is a Respironics brand. I will see if I can figure out the settings. The issue is this: It feels like too much air and it wants me to breathe in a number of times to one exhale. It doesn't help--instead it...

I have been wondering if Riluzole is often recommended to PLSers since a physician asked me if I had ever considered it. Anyone here on it? Reasons you said yes? Any worries that something about it could kickstart lower motor neuron progression (I feel silly even typing that)?

I am diagnosed with bulbar onset PLS with symptoms beginning in 2004. I just went back for a "while we are both still alive" re-evaluation with Dr. Stanley Appel at Houston Methodist. My EMG (14 years out) remains free of any lower motor neuron damage. I asked about fasciculations since I have...

Could you share the name of that oil with us? Very curious. :)

Is it possible to post a link to this study so I can look at it? I'm unable to find the study online.

Hi--I'm the person for whom Fiona is asking. I run a Facebook group on Research in Motor Neuron Disorders where we cover ALS, HSP and PLS. We have a relatively new member in Pakistan who is bed-ridden but mentally very sharp. His English is not good. If you can be a go between for us with him it...