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  • Users: KenM
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  1. KenM

    Trilogy Advice

    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.
  2. KenM

    Radical acceptance

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

    Consultation with Duke ALS Clinic

    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.
  4. KenM

    Consultation with Duke ALS Clinic

    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...
  5. KenM

    Riluzole Information

    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...
  6. KenM

    ALS untangled on evaluating treatments and “ cures”

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

    New CALS

    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.
  8. KenM

    Just curious, does anyone's insurance not cover Riluzole?

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

    Silly OT - Flooring with a PowerChair?

    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...
  10. KenM

    Edaravone study

    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.