Kathleen B (Katie)
Forum Replies Created
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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 started around 147#…haven’t been under 141 so far, but it’s a daily duty that I’m not totally adjusted to yet.
but maybe it’s time to eat more desserts between meals & save ‘healthy’ for the ‘official’ mealtimes! ???? -
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!
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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 require pivots, adaptations, deletions & additions to an ‘new normal’ each & every year. In short, I can summarize this as I spoke to in the ‘hero or survivor’ thread awhile back: pALS & their families are STRIVERS! We will do what we can to maintain the best presence of mind & spirit for every occasion of the season—and those that truly love & support us will understand & appreciate our strive-ability by keeping us in all the loops possible! This IS TRULY about learning to ‘let go’ and be ‘in the moment’ of each holiday event as it transpires each year we participate in our unique way of being ‘ourself’, just as we are & can be. I am totally honest with myself interiorly (that I do not like nor would chose the ALS path I am on), but I fully recognize I am no longer in control of my body workings—only in charge of what I can do about how I react & respond. And I will STRIVE to have the best holiday spirit I can for those I know & love as the reason I keep STRIVING!
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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 pads’ in place on each foot for 8 hours or so and I have had no more toe curling of either foot in 3 months! I have never had them fall out over nite, nor have I noticed them—but, like others have said, it seems to be doing something good for my toes & feet & it is safe & simple! (I have no core strength to get them in & out on my own pm or am, but my husband has no problem helping because he even sees the difference in my toes!) Hope this helps someone else —both ALS clinic physical medicine Dr. and the PT I work with thought it to be a nice solution to share with others also. And, in case it matters, I do have full sensation in my feet still (no neuropathy or other issues)…and I do toe & foot exercises still, with and without the resistance of the covers am & pm as well. I must do seated exercises for safety reasons, but it’s working for me—even with AFO’s on & using a ‘leg lifter’ I can get stretches & knee bends done. Yes—it is a work out—but I do fewer reps, at more frequent times during the day, so there is less fatigue from what I used to call ‘exercise time’ (once daily, 20-30 min scheduled slot, plus housework/yard work workout!)
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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! Yes—Orthotist showed me in very beginning all these things—even before it was needed, but the clinic referral for Neuro OT & PT has done EXCELLENT keeping me informed and adjusted in moving along in use of AFO’s. From May-Dec ‘21 I would wear only left & leave right at home & drive & manage my own walker in & out of car! I felt safe and capable being independent! Of course, nothing ALS stays the same, and after R leg started weakening & 1 fall with friends, I started wearing Right AFO—it just MUST BE loosened to allow foot move to drive (it was just too difficult for me to arrive somewhere & need to wrangle on the AFO). Then, more progression, driving out. Needed both on & off during day at home—even using rollator walker for safety—and now they are THE ONLY way I have any stability at all to stand and transfer, move on & off specific chairs. I use power wheelchair for all things outside home—and have AFO’s on so I can use bathrooms (with companion help too). Progression of leg weakness has steadily persisted (not able to tolerate Riluzole). My PCP helped with toe curling—I will put that tip in next message !
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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 damaged for some unknown reason. That leads easily into a simple sentence that there is no cure, and very limited treatments that can slow down the progressive muscle loss. For me, that usually seems to be the most accepted conversation for those who are not the closest of friends or relatives. It is not perhaps the most medically or scientifically precise, but it is relatable. -
Thank you Mary for your wise words for myself & Eric to benefit from as we make this journey with our spouses.
I too hope you’ve another neurologist Eric—and, if you are at an ALS clinic, there must be a director—and a social worker —who should both be informed by phone or email of your experience. It is very unprofessional and totally not what any ALS patient should experience. -
Thank you Eric. I don’t work with a speech therapist yet, but preventing choking IS on my list of ‘be aware of’ during mealtimes, so I will start being aware of the head position you learned is best.
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Eric, I’m a reader of National Institute of Health and Neurological Journal items too—AND I make copies to take to my appointments ! I started doing that by 3rd appointment when I heard same statement you did. It has helped—we DO indeed need to be our own advocates—until these medical people can simulate this condition and then go about THEIR daily lives for 3 months.
They are neither ‘walking in our shoes’ or living in our bodies—only studying a disease process as it unfolds. Be true to self and request a different neurologist if your clinic has one—it is truly important to have a mutually respectful relationship—and some doctors come by that more easily than others. -
Thank you Dagmar for nice concise explain of full spectrum light ! I used it for years in my special Ed classrooms—and some school buildings I occupied even got it for their regular rooms!
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Interesting about head position—what is proper for a person with ALS?
I did learn (on my own) that eating more frequent & smaller meals made me feel better—but I stumbled upon that because I am supposed to be getting 2200 calories a day to maintain weight—and I simply found it impossible to do that in 3 meals! (I was never a snack person, just well balanced food groups diet to get the job done & move on with other interests!) However, I also learned from primary care Dr. that lack of GOOD gut bacteria can cause bloating & distention( & bowel issues) so she did some tests and things improved once I started on what she recommended as a specific probiotic. Every little bit helps on this ALS journey—but we need to keep asking questions and learning from each other too! -
YES! Full spectrum lights, daylight bulbs—they are WONDERFUL!! Just make sure they shine toward you, on you, (as compared to being in a table lamp—where the lampshade filters/blocks the light or directs in down ward to a surface. ). Great suggestion for health & wellness for ‘ seasonal affective disorder’—plus—greater time home/bound folks!
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Hi all, so, can anyone explain why this body reaction happens in ALS? Is it a nervous system response? Central or autonomic? Will I hear about this at my Dec ALS clinic visit? This will be 1st winter with ALS & a power chair—and I live in a serious winter weather state (Michigan) like Len referred to. I just expected to stay in more since I now use a power chair…and while our ramp & driveway can be made ok, I’m thinking it will be very messy to get around anywhere else—plus dragging wheels full of slush into the house with me. (Rain/wet are/have been easy to handle, & I’ve always been good with winter wear layering). Now it sounds like the extra symptoms issue could complicate things further? Guess I’ll pray for a mild winter for all of us!
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Yes, Mary— a forum like this is SO important to learning things pro-active! ESPECIALLY your new-to-me-info about 1st responders help—VERY 1st time I have seen this and I will definitely share it as well in MI local support groups. I do hope it works the same way in all states & local communities! Many thanks!!!
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I’m interested in learning more…especially what the spinal cord injury groups are thinking—like the Christopher Reeves Foundation? Are there any studies with humans being planned? What about all the ALS researchers putting their collective heads together and coming up with at least a ‘white paper’ on this topic? Stem cells have long seemed to hold interest & potential for cures—even as far back as the 1990’s for Type I diabetes—but it seems to go nowhere in the end. At least in this country…I have read of people going out of country for stem cell therapy…no, not for ALS, )to my limited knowledge), but other things.
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I think in the case of ALS, ‘denial’ is a totally inaccurate term to use. I made plans via a life insurance plan with riders for ‘other circumstances’—because my plan was to live to 100 in as healthy a way as possible. I was not a smoker, drinker, dare devil, etc.; I kept after PCP re: checking & advising on lifestyle choices to avoid high blood pressure, diabetes, dementia, heart health, etc., etc. Never thought to ask for a list of rare diseases; was always aware that accidents & cancer or heart attack can still occur without warning. So, a diagnosis of ALS was unexpected, not a denial.
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Thank you Mary—both those links were very helpful with user friendly information! (It was also affirming to what my PCP had offered).
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I have checked with both ALS clinic Dr. and my primary care ( I’m a Michigan resident) on getting the next COVID booster…here is what I learned: ALS Neuro “yes, we are recommending for our patients as breathing issues can be further compromised with COVID, but it is YOUR personal choice to get or not, depending on how you handled the other 2 shots so far”. (I have not had any COVID infection; Just fatigue and body aches 48 hrs after other shots, considered mild response, all Pfizer doses.)
PCP—“decision is yours; depends on your lifestyle/interactions over coming months” (weddings, holidays, etc)…””” “However, highly recommend getting flu shot ASAP, but separate from COVID by at LEAST a couple weeks.” (She explained it helps immune system work best this way…which I had heard and did even as far back as 80’s/90’s when my own children were getting vaccines —even had the MMR split in 3 doses—because I was willing & able to keep to the schedule of appointments for timing well. (Their health was more important to me than the ‘convenience’ factor of giving multiple pokes at 1 appointment). So my flu shot is this weekend, and COVID booster later (I do understand that this latest boost IS part the original AND part Omicron 4 & 5 protection as well.). Hope this helps some—I think science & medicine are best understood from those with the expertise from those disciplines—but I ALSO read and ask plenty Of questions to have a comfort level of making an INFORMED decision based on factual information, not social network opinions. (Case in point: I’m currently exploring with dr’s that a cause of ALS could be an OVER-reactive/responsive immune system—in which case, being a pALS now, is this why things happened? Will I aggravate the ALS more by triggering a hyper immune system into more activity??? Or was it because I taught preschool special education for 40 years that I just got exposed to so many germs via the ‘Petri dish environment’ of a classroom (pre-COVID days) that my immunity was/is highly active/protective? ). I don’t know that there are answers, but at least I will feel better informed and proactive about helping self in some way. -
Yea—I read the article—sounded very interesting! Then I got to the part about ‘qualifying’…and, I have had no ability to climb stairs since June 2021…and my official diagnosis was May 2021 (after a full year of diagnostic work that started June 2020 as ‘left foot drop’).
so, No… not enrolling—just want to encourage others to do so —every little bit helps more than we might know actually. I DID learn from the article why my ALSFRS-R score decreased since diagnosis day—my ability to walk keeps decreasing …which leads to other skills difficulty too ( such as dressing & showering & turning over in bed). So, while I could pass on speaking and eating, & hand/arm use, I’m losing in other areas. Good luck all! I’ll be reading for results! -
THANK YOU to all contributor pALS on this thread!!! I found common thought ground in ALL of them! And then a word occurred to me: ‘strivers’. We strive to find answers; we strive to stay positive; we strive for as much longevity as possible! We strive to get up & going each day; we strive to be ‘who we were’ while adapting to who we are becoming as progression occurs (& I think this is what ‘terrifies’ some friends). We strive to keep others we know & love feeling appreciated & not getting overwhelmed. We strive the most to ride the roller coaster of physical, mental, emotional & spiritual stress related to ALS disease with balance & grace to help our own well being and that of those we will miss. Kudos to the Strivers we are beginning to end!
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Yes indeed—I was following the exercises you recommended from beginning (early am before rising leg moves & arm moves making opposite side of bed)…and the things I was getting to do from the Neuro PT place I was going (all gentle stretches like modified yoga) but I could not do any ‘on floor’ things—even when they tried to have me learn to get up from a fall (in case it happened)…and that was Sept/Oct of 2021. Plus, I continued to do as many ADL’s as possible thru the day as ‘exercise’ enhancements ! I was VERY positive that I could maintain my skills—the goal was to be a standing, walking person for my son’s Nov 2022 wedding (not that woman in the wheelchair…). But that is not my reality..and I think it is because I don’t have the support of Riluzole or Edvarone on my side? Maybe? I have been in the courage ALS Phase 3 clinical trial since April 2022 …and now on the actual study drug (Reldesemtiv), but it will not help my legs at all…goal is to support unaffected muscle & slow down progression that way. So on I roll…not at all liking the incredibly slow rate of progress in learning more about this rogue, devastating ALS condition. Thanks for asking & listening and offering so much practical things to try & do!
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I can relate to this ‘fast progression’ thread…I was April 2021 ALS diagnosis with limb/lumbar onset, left foot drop start . Got AGO’s both lower legs by May 2021, rollator walker by June to use full time for safety in & out of house—and that lasted till Dec 2021—when I could no longer manage to get self into our SUV (step onto running board impossible), and so driving & independence ended. Yes, still used rollator & AFO’s full time in & out of house…and then out of house became too difficult for safety as of March 2022. Power chair needed; front passenger seat in SUV needed to be adapted as well (Turney Evo seat by Braun Ability installed by Creative Mobility). …this is all out of pocket (unless a veteran). By June I was scheduled for a ‘wheelchair fitting’—and indeed, learned about the Team Gleason group from another pALS support group connection. WONDERFUL SUPPORT, highly recommend looking at their site, talking to your wheelchair fitting PT & specialist BEFORE ordering anything! The I lift (seat elevation) feature on a power wheelchair is SUCH a blessing for SO MANY REASONS!
long story short—the power chair I got is called a Quantum (Stretto 3)…I also tried a Permobil model—your seating service should have options available for you to try—AND, will know which work with the seat elevation feature (not all do) that are Team Gleason eligible for cost coverage. It IS a process WELL WORTH the time and effort. The power chair is customized to your size, needs, etc. start to finish, a chair can take 6weeks to 6 months to get—all depends on the supply chain for individual parts—so starting a little ahead of need is recommended—and wise. My husband & ALS clinic staff were better at recognizing & encouraging that for me. I am forever grateful. Best of everything to all of you in this fast lane of progression—perhaps not wearing ourselves out with trying to maintain skills longer will help us last longer too! -
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 25–it is common now in a number of research pieces that a higher BMI can be ‘neuroprotecrive’…even for the general population (not specific to ALS or motor neuron disease conditions).
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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 curiosity question: did we wear out our motor neurons completely? (I’m neither scientist nor doctor, but just gotta wonder if anyone else has thought of the possibility for the sporadic onset population of pALS?)