Kathleen B (Katie)
Forum Replies Created
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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’ situations (something shared by a pALS with our ALS Clinic social worker recently). Profound.
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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 minutes, because that is just not the reality of ALS in moderate to fast progression. However, I do know I want to be doing something for my smooth and cardiac muscles—as well as my affect of positivity: “something is better than nothing”. So—keep doing something!
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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 ‘marking progression of symptoms. I ask questions, I take articles, I have nods and smiles, but little feedback. I hope it will help!
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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.
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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 has not been determined—and that knowledge alone could help that survival percentage rise! I am totally alarmed that so many talented, vibrant, wonderful people are still becoming an ALS statistic… very few outside our pALS & caregivers REALLY know the devastation of personhood this disease causes for those afflicted.
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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-lived minority that moves on before much actually gets accomplished in the ‘real world’ of perpetual motion and short term goals and accomplishments.
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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 circumstances of persons in this category. And, many of us in this 300 million of those affected do not have the time & resources, nor lifespan time, to add this task to our own or caregiver responsibilities. What IS NEEDED is less ‘race to space’ and ‘race to being most powerful military nation’ among the world governments. Billions would be available instead for research and medical professionals to truly help the individual, the society, and the world. I truly hope this makes sense—we need to have a Feb 28 dedicated to CONQUERING HEROES who come up with rare disease solutions! Wouldn’t that be a celebration of true significance SO MANY in the world could become aware of & promote! -
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 to put an unused blanket folded up UNDER the mattress at end of bed (I could not keep legs on pillow stack). Best option is an adjustable bed with foot rise feature, but not always in the budget, so improvise is needed. Plus—I do wear soft tennis shoes (elastic laces) and if my feet start feeling ‘tight’ in the shoes then I know it is time to elevate them before it gets too far along. (Even sitting for 2 hours can cause swelling some days)…but 20-25 min elevation can get relief if caught before feet are ‘double’ in size. I have only momentary stand & shuffle-pivot ability in legs/feet, so I’m working every day to maintain this ability as long as possible. (Yes, I went thru the compression socks & calf massage phase in year 1…now in year 2 1/2 since diagnosis, so things are in continuous evolvement). Keep adjusting as needed. -
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, something like cooked veggie, something crunchy) AND, keep chin in neutral ‘down’ position (not head tipped back to swallow). Also helpful to take a sip of liquid AFTER a food is completely swallowed—-NOT at same time chewing. (Risk of food particles going down with liquid creating problem). FINALLY, resting in a semi recline or upright position for 20-30 min following eating WILL HELP the slow travel process of throat/esophagus muscles complete their work without bends & twist interference. I have been practicing these things the past 3 months—it has made a difference. Not easy, but safe & I can get proper nutrition still (3 meals & 2-3 snacks daily)…like everything with ALS, worth doing if it’s more pleasant for self & caregiver, family, friends.
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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 ? THIS would be more life altering in the present—those of us striving to live with the ALS condition need to be loud & clear now about such matters! (Yes, I am more emotional than ever before—but my sense of injustice toward the marginal in society has not changed!)
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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 disease category to more of a ‘spectrum disorder’ category (meaning that sub-groups exist under the large umbrella name…beyond just the familial & sporadic designations). Hope opens doors to anticipating possibilities—thanks to all forum moderators, writers and participants!
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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 good gut bacteria. So, I’ve been on a specific probiotic she recommended, (4x daily) and I am out of the loose bowel category most of the time (eating out still creates havoc, but I’m prepared).
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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!
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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…I’m the pALS, husband the caregiver…I just retired in 2019, he just in 2022. Yes, kids and grandkids, but this is not/was not our notion of retiring & enjoying family time together! Devastating, degrading, disgusting disease that destroys. Biggest challenge: that this does not affect more politicians, insurance people, big pharma etc. who make policy & decisions without ANY notion of the reality of the disease process on life & living!
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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 sporadic ALS cases…and expected to rise in coming years. Lake Michigan, although very beautiful, is 4th most polluted lake in the nation. Boating. Fuel & waste dumping; massive mansion homes on the lake all emptying this personal waste (ie sewage) directly into the nearest big lake. Agricultural land also very toxic—down to the water table with things like arsenic (used as crop pesticide in 1920’s-30’s); massive applications of herbicides and fertilizers over many decades to increase crop production & product; numerous hormones & antibiotics given to livestock for diseases & bigger, faster growth. And then there is industry! All sort & manner of auto industry & other manufacturing have relentlessly dumped into landfills and retention ponds. There IS NOT much concern for the environment until recently —and it may be too late for so many. I was not an avid athlete, farmer, military, or genetically pre-disposed…but I am now a person with ALS. I worked 40 years in education, in MANY old & structurally questionable buildings with boiler heating systems, asbestos floors, lead paint, mold, mildew, lead pipes water systems, etc.—both rural & urban & suburban settings! Unbelievable how many schools are not healthy places, but nobody really looks or cares. Teachers continuously teach —and not just 9-5, but weekends, evenings & summers,too—because we know the future depends on our efforts in the present—(no worker has gotten where they are without having had several good teachers along the way I say). The point is: this disease is likely a product of toxic exposure of all sorts that affect individual systems that have some kind of sensitivity to one toxin or combination of things. I did appreciate most in other comments the link to things like shingles & other nerve viruses…why are the researchers & ALS clinics not keeping track of these things? I am quite tired of the dr’s simply ‘tracking progression’ at each visit—waiting 30-40 years more for understanding & breakthrough treatments/cure is NOT helpful or encouraging. As was recently a forum topic idea on ‘goal setting’, it was my input that the entire ALS community needs to band together & get states to mandate registries for reporting diagnosis & step up the National Registry ability to have an ACCURATE count—this may not at all be as ‘rare’ as it seems to be presently!
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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 NATIONAL level to get a better ‘count’ as registry would be more operational. BEST OUTCOME: noted change in prevalence numbers—leading to greater awareness that this can happen to ANYONE, anytime—and thus more urgency for early diagnosis, treatments, etc. Far too long, ALS has been in the shadows as a rare & incurable deadly diagnosis. We need to change that perception this year! -
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 mutations at play in sporadic ALS. This news is horrible as the disease itself. I would be interested in having links to share/leave with kids items…or sharing with ALS Clinc dr’s. I want clinic dr’s to share this kind of info—instead of just marking progression, taking samples, and never sharing what results tell them about me & my situation (such as why my system rejects totally the use of Riluzole, Radicava, etc. so I am left with NOTHING to slow progression) —except working at keeping my BMI above 25 (which is neuro protective I have read on my own).
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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 were not totally unique to me (although I do have a gall bladder). My PCP did learn months later that I had no good gut bacteria at all, so the bowel issue is resolved as long as I take a specific Ortho-spore supplement 4x day . Thanks again pALS.
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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 badly the other forms (Riluzole & Radicava, infused or oral)? A new neuro really did a sales pitch, but had no answers to these questions when I asked. Im not willing to experience feeling worse…especially since my legs have lost function and getting to a bathroom is a major effort experience. Thanks for help here! -
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 patients also. It was actually the Physical Rehab & Medicine Dr. at the ALS Clinic who writes the scripts for me (she is a D.O.). I must add that the OT’s learn from working in the same facility as the neuro PT’s how to manage the fatigue factor for pALS. In addition, just learned that my next step is called ‘companion care training’—which means my husband attends with me and learns how to safe also while helping me. (It was easy for me to coach him in stretches, etc. so far.)
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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?!
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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).
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…been wondering this awhile now—why or how is MDA (muscular Dystrophy Association) involved with ALS ? …if my interpretation of the acronym is correct…
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<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>