Kathleen B (Katie)

I am fine if any one wants to use the ‘Striver’ adjective!  We are a community of persons unlike any other that I know of—because we had no choice in belonging…yet we must, and we do so.   Prayers for all strivers, caregivers, family & friends who truly are ‘there’ with us & for us through this devastating disease of  continuing ‘last time’ si…[Read more]

Yes, stretching movements  of  all types is helpful—at this point, I use a leg lifter  while seated in my recliner (feet on or off the foot rest) to move legs up/down, left right, and to pull them into ‘knees up’ position.  I do this as I am able thru the day, and only as much as feels comfortable. I had to let go of setting a number of times or…[Read more]

Yes—I have decided to ask each participant at my next ALS Clinic appointment to give me an article or item idea to do PROactively until the next clinic appointment that will help me maintain my current ALSFRS-R score.  Indeed, I will give 1 week notice in email to each of the request. My reason for this: I am tired of clinic just watching and ‘m…[Read more]

Thank you Mike, I now understand I’m a statistic…the example & clarification made total sense.  As an educator colleague, you were likely quite a gift to MANY students along your career path-you made a positive difference!  Your ALS story is indeed the reality of this disease, presented with concise clarity.Thank you.

Not sure if it’s a statistic, but I consider the fact that ANY kind did of loss of function in even 1 body part is SUCH an alarming loss of ability —arm, voice, leg, hand, face, core, hand, foot—because it signals a cascade of continuing progression for which there is little to no stoppage!  Even trying to learn why 10% can go beyond 5 years…[Read more]

Thank you Amanda—for reply & understanding.  And, just this AM (2/11) I read an article by another BioNews writer (Mr. Clingman) that ideas I have thought before but feel alone in thinking.  It was his SOS for advocacy, but in terms that were more relatable for me.  I will keep doing what I can, long as I can…but overall, we are a short-…[Read more]

I did indeed browse the Rare Disease website.   However, I found it more & more impossible to be positive and ‘feel good’ about being part of such a community.
I am so sorry…being part of a rare disease category community is not for me—it is NOT helping the political community at all—they are totally ignorant of the needs and dire circumstan…[Read more]

Yes—good suggestions to elevate feet 2-3 times daily…a recliner chair also helps do this if don’t yet have a power chair with tilt & foot rest lift features.
plus, I used a thick, large beach towel (rolled up & taped around ends) to put under ankles to elevate feet even better—pillow from couch or bed was too squishy.  At nite, it it easier t…[Read more]

I had a speech-language pathologist give me direction on this—she explained that the muscles that help swallowing just past the back of the throat are sometimes weaker & cause food not by to ‘make it down’ efficiently. Her suggestions: chew WELL—like 30x before swallow; alternate type of food during a meal (like something hard/Something soft, s…[Read more]

One more viewpoint again—I think Bionews writer Kristen Neva had a recent article that fits here well—her musing about ‘why is it that the US will allocate 240 million/billion dollars to build & support rovers to study Planet Mars’—why not put that much toward Medical & scientific minds that can help resolve life shattering diseases like ALS ?   T…[Read more]

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]