Kathleen B (Katie)

Thank you Dagmar—very understandable explain of what motor neuron destruction is about.  So, I don’t hAve the advantage of any 3 of those meds to flush toxins right now-but I am doing the other things as best I can.  Plus, I’m a lifetime ‘lightweight’  size person, so I am working on gaining maintaining weight —or at least keeping my BMI above 2…[Read more]

Kudos to all of you—many good thoughts here.   …what I sense the most, though, is that a common link from this forum (& other support groups I’ve come across) is that most pALS seem to have been very active, quite outgoing, and totally service-to-others kind of people!   And then all that disappears about us—suddenly & gradually.   My big curios…[Read more]

Hello again—more interesting reading, and astounding amount to ponder! Kudos to Duane for being nearly 80!  with ALS!  I have notes I the ‘supplements thread’ what I take and why—I am exceedingly careful due to allergy & family immune system disorder issues, so have always worked with a knowledgeable primary care doctor who was BOTH western &…[Read more]

My goal at age 40: to live to a healthy 100!  I, too, looked young for my age then, had just had my 3rd child 7 months previous, and was staring my ‘next 20 years’ of teaching special education in a new location.  Just thyroid & allergies to deal with—no big deal.  Then, ALS dropped out of the sky (sporadic limb/lumbar onset)…year & a half after…[Read more]

I’m right there with you on the Medicare decision thing—they have a committee making decisions that is NOT medical persons from ANY discipline—and, obviously NO connection at all with anyone who has ALS?! It IS a broken system for sure.  Thank goodness for ALS State & National organizations & support groups help! (i.e. Team Gleason for instance).

I can TOTALLY relate to the ‘stubborn’ concept John (M C )mentions!  I often inter-changes it with the words ‘determined’ or ‘persistent’.  I was not an athlete at all, but I WAS a perpetual motion person—and loved mobility of all sorts (except carnival rides). So, I resisted and persisted in ‘walking upright with dignity’ once my husband brought…[Read more]

Thank you so much Debbie Z! Very helpful post for things AND their usefulness & how to ideas!  The mention of cost & ‘worth-it-ness’ is also very good info—this ALS happens to be the way we are spending our retirement dollars…but, just like we’ve done through our married life (38yrs so far), we are very conscious of cost-benefit ratio on all pur…[Read more]

Your tribute to husband & father is noted…and felt by all this Forums community… as it is a shared experience we all have in common in a u unique sense.

I applaud you Maggie for your post—your voice of reality is stated so well—indeed a team player of a dynamic duo!

WOW! What a lot of  supplement things!  I agree most with pALS Ed, and Mandy thanks to pALS Jean Pierre-Le-Ruzic for the well-informed responses! Yes, Dagmar & Amanda—continuing helpful reminders of caution also appreciated!  Now for my own input in this topic:  I have been a supplement user foe 40 years—but always with the cooperation and input o…[Read more]

I began using a walker after going thru  trekking sticks use, then 1 AFO on weak leg with foot drop, then single cane, next double cane use—in the span of time from June 2020-May 2021.  I was still driving at this time, and going to PT—plus Dr. appointments—all PRE-diagnosis.  It was my husband who brought a walker into the house (formerl…[Read more]

THANK YOU for posting the link to rise access!  I got a note on it from an ALS local group in m state, but am not tech savvy enough to share a link.  I just got my ‘lift feature’ chair today— doing my letter tomorrow!
AND, we were made aware (again local ALS support group Zoom meeting) that an organization known as Team Gleason DOES have a grant…[Read more]

Good topic! Will contribute a few that were baffling … and add on as I think of others encountered over the past 2 years since diagnosis.
Actually, I was a special ed teacher for years and thought that field was full of acronyms —“alphabet soup” I called it—then I was diagnosed 1 year after retiring—& discovered I had a whole NEW world of ac…[Read more]

Yes, indeed…being in a wheelchair is a vey sad experience that we share as users.   My definition of how it feels: I am a left out and a leftover.  Many try to understand, even close friends and caregivers think they are keeping us INcluded, by having mobility. The reality is simply a lack of experience of BEING the person in the wheelchair !  Fo…[Read more]

Here’s my short answer: 1) it starts in medical school—ALL students pre-med & beyond need to gain knowledge & exposure to the neurodegenerative disorders.  Those specializing in neurology should be MUCH more tuned into these disease processes.  2) there needs to be INCREASED collaboration among ALL disciplines of medicine—from PCP’s all the way t…[Read more]

Well,  I am just 2 years into diagnosis, and I have yet to come across family or friends who even seem to know what it is…so I have not had any offensive remarks or questions yet.  However, I do often hear “you look si good” (and I am in a chair now, no longer walking or standing), so I guess the concept of this being an ‘invisible’ disease (ak…[Read more]

Oh my…the self-care plan list is a juggling act of 8 huge concepts…and my 1st inclination as a person with ALS is to arrange them as a priority list to tackle—AND add one more: Grief Cycle.  Here is ‘why’ that one belongs for ALS as a stand-alone (rather than just tucked into the Emotional concept: it truly permeates both pALS& cALS in a totally…[Read more]

Peace of mind and heart to you & all family & friends Amy.   MANY thanks also for sharing that your celebration of life also resulted in having a wonderful donation for the local ALS association. That is one more tribute & legacy of the life well lived by your Mom!  She is well now, smiling & so proud of you & all those she loved!

I don’t think I’ve had COVID so far (2vax, 2boost), but I do stay in a small bubble too so can see grandkids ages 1 & 4 (who are now finally able to get vaccine protection).   My question tho—what is FRS?  (I know FVC for breathing)— what does the next acronym involve?  From Dagmar’s response, I’m guessing it is movement issues?  Thanks for he…[Read more]

Well, I am totally familiar with the Zac Brown Band (have some albums…and playlist songs now)…but I don’t ‘follow’ the people involved any longer, nor am I on social media to see this kind of news, so I missed the ALS diagnosis and Hop on a Cure foundation.  Until seeing it today (6/6/22).  I do not know yet if it will help with awareness & f…[Read more]