Kathleen B (Katie)

Whew! —I was feeling like an anomaly of some sort with the digestive/bowel issue…thank you for that final comment; I am thinking that this is another example of ‘new learning’ about ALS—especially as it becoming more studied.  Seems it is more complex & heterogeneous than formerly understood.   Some day, it might even rise from the rare diseas…[Read more]

I was having the issue when 1st tried using Riluzole…plus EXCESSIVE fatigue…so I had to stop Riluzole after 4 weeks.  Bowel issue persisted, so I started reading labels & tracking foods eaten for connections.  Turned up soy, advocado, fried food, all made list on  worse days… but my Primary Care did a blood & urine test that showed I had ZERO goo…[Read more]

Thanks Steven W—right you are—another theory for the mountainous pile—but at least that concept of personality trait theory made me laugh at some points!

Financial for sure. Planned for retirement well enough for our satisfaction—but NEVER did it include handicap accessible home renovations & transportation need costs, etc!!! We were caught in time of inflated house values—TOTALLY unable to ‘downsize’ our home AND afford a new mortgage PLUS renovations needed.  Goodbye retirement anything…[Read more]

WOW!!! What a lot of theories & input!!! As for the ORIGINAL start piece—I live in MI—lifelong resident in both rural and metro Detroit area. Yes, between agriculture & industry in this state, there is a LARGE study of the environmental impact on land & water—being conducted thru University of Michigan Research.  Yes, MI has highest % of sporad…[Read more]

Here’s a good goal—all of us need to work on getting our State representatives and senators to understand that EACH State needs to have an ALS REGISTRY mandatory.
Only 1 state currently has an operational registry, 3 others have a start but not an actual mandate that requires doctors, clinics, etc. to report cases.  This would help then at the…[Read more]

Thank you Kluas68, a good reply for a me as a non-science, non-medical pALS.  However, I am very concerned for my children and grandchildren —even though I am a “sporadic, non-familial” ALS person.  DID have generic panel for all the known generic, familial ALS & have NONE.  Short lived peace of mind—Then, I too read that there are genetic mu…[Read more]

Thank you everyone—very helpful information to be gleaned from the entire conversation. It does indeed seem that the ‘other R’s’ meds are in use by those on the ‘new R’ med to slow progression. It was also helpful to learn that the fall down fatigue & extreme bowel activity I experienced in the 1st 8-10 weeks of taking Riluzole after diagnosis w…[Read more]

Thank you all—very interesting; but how has all this gone with insurance & cost wise—I’ve seen it can be average $700 monthly WITH insurance!
Plus, it seems it is not a stand-alone item…that it will co-exist with Riluzole & Radicava?  AND, finally, for those for whom it needed to be stopped—were you also persons who could take—or reacted badl…[Read more]

YES to PT & OT for pALS.  I’ve been able to benefit from both (as Medicare allowed) since diagnosis 2 years ago. (I am happy to know that there is a work-around that now!)  I can learned from ALS clinic right away that it is ‘neuro PT’ that is helpful in ALS—as Dagmar said, such as those physical therapists who specialize in MS & Parkinson…[Read more]

p.s. to my previous post about PT…how many getting PT are also on Riluzole or Radicava infusions, or the new pill form of that, Relyvivo? (The drug name for Amlyx thing FDA approved-my spelling might be off).  It is thought to be of help in slowing progression—plus PT early even better?!

Many thanks Dagmar for the list link! Very interesting indeed…mostly that there is an overlap in some things that ALS research is looking into for causes, treatments, clinical studies, etc.  (such as mitochondrial dysfunctions, protein ion issues, gastrointestinal problems and the like).

…been wondering this awhile now—why or how is MDA (muscular Dystrophy Association) involved with ALS ? …if my interpretation of the acronym is correct…

<p style=”text-align: left;”>Indeed—the last 2 sentences of George’s item RING TRUE for all of us with ALS!   It IS the total truth and actual reality.   Thank you George—I will memorize and use these sentences with credit to you!</p>

Great ideas John—and easy it seems!! I’ve been a lightweight all my life …had high metabolism & ate anything & everything all the time!  From May 2021 diagnosis I was told to be on 2200 calories daily!! That’s ALOTTA food—I have to put out the ‘next thing’ to eat all day!, but I’m not feeling hungry that often, so it’s tough.   I’m nearly 67, and…[Read more]

So it seems there is a MISSING reply between KimG 1 & 2 messages??  She responds positive & ‘following’ everything recommended—but I see nothing further.  Please explain and add in the response as. TY!

Oh my—what a Holiday Season thread! In a smiling way, of course—it is very unique yet similar to every ALS family.  We know for sure this is not a disease that just affects the single member with the diagnosis. Rather, it is life & living alterations for the entire constellation of a ‘family’.  Shopping, cooking, cleaning, visiting, and so in all…[Read more]

The suggestion from my PCP re: toe curling: try using those ‘corn relief’ little pads…buy a couple packs, stick 2 pads together (the 2 adhesive surfaces together)  to create a small, 2 soft-sided pad —and place this pad between your toes at bedtime—starting with space between smallest toe & ‘ring’ toe, then next 2 toe spaces. So, 3 ‘toe spacer pa…[Read more]

My AFO’s are custom fit, by an Orthotist recommended by the ALS Clinic, shortly after my May 2021 diagnosis. They are officially called ‘Blue Rocker’ AFO’s, very lightweight, and came with a liner (removable & washable) as well as 2 11-14” soft strips to fit inside AFO either side of where my shin bone is—thus keeping my shin from ever rubbing! Ye…[Read more]

I too keep answers simple—yet informative—and totally unlike what most of the ALS ‘fact sheets’ list.
My generic explain involves mention that I have a disease called ALS, affecting all my skeletal muscles, which will eventually stop working,  because nerve messages from my brain & spinal cord that send signals to cause movement are becoming…[Read more]