Recent content by KenM

When I first got my trilogy I struggled for a couple of months with the cadence of the air flow. I just could not get my preferred breathing pattern to match up to what the machine wanted me to do. It was frustrating. Eventually though I got settled in and now no problems with it. It may take time.

thank you all for this conversation, it has been very helpful.

The UNC clinic is in Chapel Hill, not Charlotte. I went to Atrium. I was initially happy with Atrium, then they had major staff turnover and were dysfunctional for a time, so I switched to Wake. I understand the new neurologist at Atrium and his team are good.

There is an ALS Clinic right in Charlotte -- the Carolinas ALS Center. The next closest one is in Winston-Salem, at Wake Forest Baptist Medical Center. I have been to both, they are both solid. I'm here in Charlotte, happy to provide other support if needed. Have you reached out to the Joe...

There are numerous and obvious reasons why it is statistically difficult to demonstrate how much riluzole may be extending life. But it seems to be that one indicator that we should be able to see fairly clearly is if the entire population of people with ALS is living longer on average than...

to all, I really appreciate the thoughtful tenor of this discussion about evidence and causality re: ALS treatments.

Martha, very very sorry to welcome you to this sit, but know this is a great place for advice and support. Have you gotten support from the NC ALS Association chapter? They have support group zoom meetings if that is of interest.

I was covered by United Health Care until January of this year, and they covered Riluzole since my diagnosis, for 4 years.

We are completing plans to build an accessible home and the flooring expert we met with recommended laminate as the strongest and least expensive option for future power WC use. We looked at samples and they really replicate the look of hardwood. We'll use it over a slab foundation as that was...

to those considering the pros and cons of Radicava, include in your calculation the possibility of chest port infections that can lead to blood infection and even sepsis. I ended up in the emergency room and hospital for 4 days; that was the end of the chest port, and of the Radicava treatment.

My view is that the FRS is just a tool in the toolbox. For some functions, it is perfectly adequate. For other functions, it is a blunt instrument. We need to make sure it is fit for purpose. The problem is less with FRS than it is that our toolbox is largely empty -- we need other metrics and...

thanks to all, this is hugely helpful for planning purposes.

Dan, I'm very sorry to hear about your diagnosis, and hope that a second opinion reverses it. Telling the family is the hardest part. We're here for you.

This thread has been hugely helpful as we start planning for accessibility, wheelchairs, and a Hoyer lift. Thanks to all.

Our ALS Association chapter has a mentor program that matches up people with ALS to newly diagnosed. Check to see if yours does. If not, use forums like this to find people with similar situations with ALS and reach our to them. I found that some early phone discussions with people with ALS I...