Recent content by Ken15

  1. Ken15

    Medications

    A mind-numbing list of alternative treatments: ALS Untangled Completed Reviews Ken
  2. Ken15

    you know what bugs me?

    Karen, No problem. It's not like there is an overwhelming preponderance of evidence here. Just thought, because of the credibility of the source, it would be appropriate to post. Ken
  3. Ken15

    you know what bugs me?

    Karen, Without trying to give anyone false hope, many here know of Dr Bedlack from Duke University. He has been running a study of 38 confirmed "ALS Reversals" since 2018. According to this NEALS webnar, the study hasn't found a definitive common thread among these "reversals", but he is...
  4. Ken15

    It's been four years

    V, On the one hand, your words are heartbreaking and on the other, they resonate so clearly with us. CALS-to-CALS, you're doing fine. Stay within yourself, do what you can and above all, do NOT second-guess yourself. There is only so much time in the day and you have only so much (mental &...
  5. Ken15

    VSED Article

    This was in today's Washington Post. No direct mention of ALS patients, but contains info for those PALS who may be considering VSED. WAPO VSED Article 03Nov2019 "In the days leading up to her fast, Rosemary said goodbye to close friends and family members, and started eating half-size meals...
  6. Ken15

    C9orf72 Mutation in General Population

    This appears to be a fairly recent and comprehensive study: Age-related penetrance of the C9orf72 repeat expansion "Our data showed that median age at symptom onset among carriers of the C9orf72 repeat expansion was 58.0 years of age (95% confidence interval: 57.0 to 59.0; see black curve in...
  7. Ken15

    questions about clinic and a study

    Our experience- Clinic: We have been to 5 clinics, spaced 3-4 months apart. See each specialist for 45 min, starting at 8AM, including dietitian, OT, PT, Social Worker, Pulmonary, Speech and sometimes an ALSA chapter rep - plus her neurologist. At our last clinic (earlier this month), we also...
  8. Ken15

    C9orf72 Mutation in General Population

    My PALS sees Dr Oskarsson, ALS Clinic Director (Mayo, FL). She loves seeing him. As of this month, she has seen him for 2 yrs, including 5 MDC's and 14 clinical trial visits (this year alone). They are no strangers to each other. From a caregiver's perspective, he and his staff are caring...
  9. Ken15

    Questions about BiPAP/Vent

    After multi-disciplinary clinic pulmonary tests, my PALS received a Trilogy this past week while at the Mayo (FL). The tech put it in PC mode. She does not have a trach. How do we know if this is the best mode for her? Ken
  10. Ken15

    How are others faring with respirator care?

    This is a gut wrenching thread. I applaud and admire you all for your honesty and willingness to "put it out there". By coincidence, a week or so ago I was thinking of starting a thread about what would happen if a therapy came along that stopped the progression in its tracks; not reversed...
  11. Ken15

    Understanding fALS

    Hopefully Nikki will reply, as she is very knowledgeable about FALS. However, I will pass on what I know, as my PALS/wife has the C9orf72 mutant gene and has been designated FALS, even though she knows of no other family members who have had ALS. While family history of ALS is important, a...
  12. Ken15

    ALSA, ALS TDI, etc

    Good question. I have also seen, on this forum, comments that ALSA (national) may not be the best place to donate, though no specifics. Charity Navigator is one of the best sources for evaluating the quality (and transparency) of charitable organizations. The drawback, from a ALS perspective...
  13. Ken15

    Rx question--- Riluzole

    Rilutek is the brand name and Riluzole is the the generic. In addition to GoodRX, check out WebMDRx. They were $40 less than GoodRx for my zip code for 180 50mg tablets. Ken
  14. Ken15

    Too disabled for ADA?

    If I may, I'd like to summarize and, to some degree, expand on points made in this great thread: From this CALS perspective, toileting is one of the most challenging aspects of caring for a PALS. Now, my PALS is not on a feeding tube or BiPAP or CPAP, so my opinion may change when or if that...
  15. Ken15

    Too disabled for ADA?

    Been there, done that. I announce to the Women's restroom that I'm coming in with a wheelchair bound female and make sure I speak loudly while we are in the women's stall doing her business, so new entrants know I am in there. Interestingly enough, some women's stalls are as grungy (or worse)...
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