Kathleen B (Katie)
Forum Replies Created
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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 & alternative medicine trained—AND willing to listen & be totally honest in giving me both sides of things I asked about or shared from reading. (Yes, I did search for a Dr. many times).
I will offer another perspective now: I was immersed in the world of Autism Spectrum Disorders for 30+ years as an educator. Essentially since it had no ‘label’ until it became a household term of vast proportions! However, it remains a ‘neurological condition’ for which there is no specific cause & no ‘cure’. Therein is my parallel universe connection. Granted it is not a deadly disease like ALS—my point is that since the early 1980’s it has been studied an a MYRAID of ‘treatments’ have been developed and tried—and INDEED there was progress I some subgroup of persons with autism for most of the therapies. But nothing for all. Similar to this ALS condition—seems we are a collection of ‘subgroups’ as well—things work for some but not for all. What I did learn also over time: EARLY intervention for autism spectrum disorder individuals made the MOST SIGNIFICANT improvements in functioning. This I also see as the future in ALS—if research and clinical trials can find things to use early—and diagnosis can be accelerated as well—then maybe the playing field can level for pALS. That is my hope and prayer for all of us. We can be safe and well in what we do—we are likely the most aware of our body functioning group on the planet! -
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 retiring, age 65. Yes, in my opinion, ALS causes accelerated aging of the body & systems, as the loss of motor neurons shuts down the functioning of so much. I am now in an older body for sure, tremendous loss of mobility & independence—just day-to-day effort to make it to the next event I look forward to—grandkids, weddings, friends visits, and all those things I looked forward to in retirement! Only my love of landscape work and gardening has been compromised down to a single air plant & succulent plant. I truly pray for some longevity —can’t take Riluzole—am trying clinical studies—it’s all up to the Good Lord to know when my time is up—(& now I am more aware of that fact).
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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).
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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 home a walker & said he wanted me safe while he was at work still. He watched, he waited for me to understand — then he put it in plain terms: if you fall and get injured, we will have less quality time together, or maybe none at all. Period. THAT made sense … it’s not all about me—it is ‘us’ that really counted. I listened & learned—an old lesson, but a truth: Sometimes what we want is not really what we need. Be safe John—those ‘eyes’ you notice might just be the caring folks that would rather see you SAFELY moving about, rather than not being there at all any longer.
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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 purchases. Good to know some items help in travel—we have not gone farther than a few hours so far—but we would like to go across or out of state to see friends and family. Your note gave us the idea it IS possible! TY!
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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.
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I applaud you Maggie for your post—your voice of reality is stated so well—indeed a team player of a dynamic duo!
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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 of a PCP with knowledge of BOTH Western & Alternative medicine experience. PLUS—I do have any allergies & sensitivities, and so even ‘natural’ kind of things I am careful to ask about specific ingredients. What I have learned over time, supplements are just that: supplementing what the body lacks or preprocess inappropriately (meaning a well balanced, nutritional diet of real foods from all food groups). PLUS, it does take TIME for a body to acclimate to supplement use, so monitoring on 3 month intervals, and being aware of our own body system reaction(s) on a cognitive level is very important to not over using supplements or wasting of time & money. All that said, I am only 1 year, 10 months into lumbar onset sporadic ALS—and Riluzole was HIGHLY non-compatible with my system for 3 week trial—the EXTREME FATIGUE was very debilitating! But, I do maintain my 17 supplements, and just thyroid script—with nod from neurologist as I have been working all along with PCP’s on this. Some ARE indeed what others are on; but, for me, I have found it VERY important to avoid anything containing soy,ragweed or mold components in all supplements. I was found to have total absence of glutathione and good gut bacteria—once those were supplemented overall health improved for better (3 months or so). This was determined by the PCP referring to a well-versed allergist for testing, and a sound urine-blood nutritional, toxins, and digestive micro biome test. All before being diagnosed with ALS at age 64, 1 year after retiring. So, while I am thinking perhaps these are helping maintain general health thru this now ALS body, I do think that is a good thing overall. Despite the fact that my legs are now only functional for brief standing for transfer & I rely on a power chair for safe mobility. I think there is something about supplements & each of our body systems that merits research—but that may be awhile down the road—the race to find something in the medical world to slow progression for sure will hopefully be coming sooner!
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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 (formerly used by his Mom with Parkinson’s) & ‘offered’ that it might be a good idea to use it when I was out on own in parking lots & shopping, for better safety. (He also knew I was walking VERY SLOW…and that I am fiercely independent). So, I did start using one for our-&-about trips. At ALS Clinic diagnosis of ALS, (mid-May 2021) the walker was highly recommended as ‘mode of movement’, along with neuro PT to learn its uses for safety & energy conservation. Very BIG help. And precursor to losing ability in other leg & not driving, and full time in & out of home use of the 4-wheeled walker (by Dec.2021). So it IS a process, not an event to using one. I DID NOT want to fall and be injured, and I wanted to go places and do things. Indeed—this is my view—I did ‘give in’ for safe independence—but I cognitively know for certain that there is no way it is comparable to standing/walking/moving about without support. Life with ALS means continuous ‘replacing’ of the old ways of doing & living with new ideas & alternatives—to get as much longevity out of this diagnosis as we can. AND helping those around us understand how much in life we all come to take simple things for granted.
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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 program for covering the lift feature BEFORE a power chair is ordered. That was the blessing we found out about a week before going for wheelchair seating appointment—WOW!—check out teamgleason.org —Steve Gleason was a football player, now a pALS —and started a foundation to provide for PATIENT needs that are not Medicare/other insurance covered, etc. Great group of people!! -
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 acronyms to to interpret!BUE —Both Upper Extremities (arms)
BLE – Both Lower Extremities (legs)
ROM —Range of Motion
FVC- Forced Vital Capacity (breathing tat term)
PHI – Personal Health Information -
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 ! For sure, it makes one feel like a child again…interrupting conversation if we can (when those conversing & walking behind us might notice a hand signal that we want to join in); or only being able to go places and do things when there is someone willing & able to manage the person AND the chair correctly. The loss of independence & freedom from being a very active and social being is a devastating loss all its own. I’ve shed many silent & hidden tears over this loss of self piece — just since needing to use a wheelchair or power chair more in the last 6 months. The most brave (speaking up) I’ve been so far is to now request others to also sit down near me if a photo is to be taken. That way I do not have to be the child-like presence in a printed, framed photo of peers, family, friends. I truly think everyone means well; I’m not complaining…there are just ‘new’ facts of life that occur continuously in this ALS journey—the relentless challenge of ‘living well while living with ALS’, and maintaining a ‘quality of life’. Thanks pALS for listening & understanding!
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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 to the top researchers! 3) ALS Clinics need to be much more funded and available to the needed patient population…TIME is of the utmost importance in ALS, as is the connection to coordinated services. For sure not easy, but it is time for ALS to come out of the shadow of ‘so sad, too bad’ complacency…way too many individuals have been lost & families devastated by this under-funded disease since 1939, when it was simply re-named after a sports figure was diagnosed and ALS ended his stellar career. History of that has been repeated for EVERY individual diagnosed since that year.
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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 (aka Tyoe 1 diabetes) rings true in the early stages of limb onset ALS? I have no problem answering questions when asked, but I do not go into detail(s) on a personal level —I prefer to ‘textbook’ and ‘the reality is’ kind of answering responses. I might add, these are longtime friends & family members who inquire, not unknown persons (so far). So I do th ink they are looking into additional info in their own as well—and I appreciate that about my circle of acquaintances !
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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 unique way. It is our ‘backpack’ perpetually—simply by the nature of the disease for which there is no effective treatment or cure—only an recently increasing set of ‘maybe getting closer’. That is WONDERFUL news for our younger relatives, friends, children & grandchildren—and my prayer that it WILL BE reality in their lifetime! But for the last 80 years of this disease & the foreseeable 5-10, self care plans need to start with managing the grieving process; followed by physical, social, emotional, spiritual, environmental, financial, intellectual & occupational. I do think the ‘balance’ of these toward ‘wellness’ will depend on the circumstances and situations each individual is in at the time the ALS diagnosis bombards their world.
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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!
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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 help —always hope to learn new things in timely manner.
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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 & fundraising– but I do know that Michael J. Fox has certainly been a celebrity to raise awareness about Parkinson’s Disease & garner research funding. Since this, is in many ways, also considered a neurodegenerative disease–as it seems so is muscular dystrophy–where is the connection between the sciences for these? How can they be ‘tied together’ in a package of awareness information when it comes to the public? Are they all considered ‘rare diseases’, or just ALS? I do have so much to learn–and limited time to spend focusing on such things–but I don’t see much changing soon if there is not some greater collaborative & cooperative effort of multiple disciplines involved. Please understand, I am not being negative, I am just having a hard time wrapping my head around the lack of possibilities that are hopeful for maintaining some sense of ‘normal’ in living with ALS…at least at this point of 2 1/2 years into diagnosis with moderate-fast progression of limb/lumbar onset sporadic ALS.
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Thank you for Richard for starting the thread…and Dagmar for putting the text of the speech here also. I am appreciating the thought-proving responses…and will add my own now too. Although I have reached the age of mid-60’s, I was quite unfamiliar with the name Lou Gehrig…and even tho’ it was mentioned at diagnosis, along with that lengthy medical term for this disease, I chose just to call my ‘condition’ ALS…once I had to start naming to close friends /family why I had a cane, walker, etc., not a single person ever said the name Lou Gehrig nor did they question ‘what does ALS stand for.’ That got me thru the angst of trying to say more —and the emotional turmoil that created! Besides, I was a 40-year teacher of student with special needs, so much of the social network I revolved in was either going to look it up on their own, or just accepted my positive spin on saying ‘it’s a good thing I have experience with adaptations & accommodations’! So, as others have said, something that has been around for 80+ years has certainly had MANY more people from MANY more walks of life make this difficult journey, and it is still only connected with a single sports figure name? From generations ago? Yes, I understand the content & approach of his speech—but perhaps it fostered complacency & resignation over the years—instead of awareness & definite need for this disease to be addressed? Presently, If I bring up the name Mitch Albom, I get more response now re: ALS because of his (1970’s sometime) book ‘Tuesday’s With Morrie’. And then there is the young man who lost his battle with ALS, but left a book in progress called ‘We Are Not Invisible’—which is nearing publication by his family & friends this Fall perhaps. From what I have seen so far, it seems his book is more about advocacy & feeling ‘invisible’ in so many ways during the disabling journey with his family & fiancé. I VERY much appreciate finding the ALS Today Forums and newsletter, as well as ALS organizations, Clinics of Excellence, the accelerated research since the Ice Bucket challenge, and now even a movie perhaps. Thus, hopefully the future for pALS & their families may be in motion finally ‘around the bases’ of awareness, advocacy, and ‘heading toward home plate’ after so many years of disappointing underfunding and progress. I hope this brings Lou Gehrig into the more recent generations of ALS inclusion.
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AWESOME song—music, lyrics, message! Totally agree with all other opinions also—THANK YOU THANK YOU for doing this for all of our community—a tribute to our caregivers & families also! I am just about 2 years since diagnosis, yet can completely relate to every word & feeling expressed…
I do hope it spreads far & wide — although I’m not on FB, I will share it on to family & friends—and check with our MI ALS organization to see if can be part of the upcoming ALS Advocacy Conference (June 14-16). -
Input from someone who had ‘fall down fatigue’ experience with Riluzole …and the ALS Clinic neuro was willing to work with me on making all kinds of adjustments for 2 months following diagnosis & starting the Riluzole pill, because I really wanted it to help. Unfortunately, he finally talked with me about the fact that for whatever reason, my system would not accept this med use…and it would not help to try Radicava infusions, as it was the same ‘bottom line’ drug. (At diagnosis, i quickly turned down the infusion option, as it seemed very difficult to manage AND think about quality of life, etc., while at the same time hearing what ALS was/is). So, the oral form of Radicava will not be an option either for me. I do TOTALLY appreciate the information and insight about Medicare and insurance — that has been a confusing nightmare for me — as a I moved into Medicare coverage just 3 months before being diagnosed! (Katie)
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Thank you Dagmar & Kathy S, I appreciate your insightful perspectives–helpful in my situation as I will consider all the research & trial info more in light of ‘read-only’…good to know things are going on, keep a list for future perhaps, but not pursue or anticipate a ‘when’ factor. INDEED, the daily challenges are enough…focusing on the quality of our lives is of much more help. Yes, mental and physical health I am learning to have some better control over–thanks to these Forums and such useful information from pALS!
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Besides overall confusion about most things ALS, (as 8-9mo newly diagnosed) this concept of clinical trials and research into helpful items is the UTMOST mind-boggling! While it seems to be that there are many things new study ‘treatments’ underway to help slow progression or help with some symptom or another of sporadic or familial ALS, the reality of this in the clinic setting seems nil. I’ve only had a half dozen clinic visits, but each time I ask, the response is related to: these trials and studies will be helpful for the future persons with ALS, (not of present help); that nothing is FDA approved; that some things are really not showing long term to be safe or effective; or that criteria are difficult to meet for being a candidate, especially if a patient is on numerous supplements (no mention made of actual medications). Is this what others are understanding? I find it hopeful to read the ALS News Today about all the promising things, and to follow the Forums also, but our population of pALS seems so small and widespread that I wonder if anything will come to fruition that might help those of us who are now in the trenches of this ‘neurodegenerative disease’ process.
I DO hope this does not sound negative–it is not at all intended that way…just looking for a perspective idea from which to view the abundance of ‘possibilities’ information. Thank you!
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An early May 2021 diagnosis for me “changed our life as only those who have had this diagnosis understand.” (Thank you Mary, your words are a spot on description!) …and I have been with the love of my life for just 37 years…hoping to make it to 40 at least! My struggle at the moment is the fear that something will happen to my husband, because he is not as good at the self-care things as I would like him to be…he is still working also, plus added on many of the ‘daily duty’ things (laundry, cooking, cleaning) that are now very difficult for me (due to both legs not functioning well already). I do like your ‘breath’ idea remind–I’ll model it for self & he may adopt it! Thank you also Amanda for the list–it will be useful…I recently saw a similar item about pALS & caregivers who actually carry a ‘grief backpack’ with them much of the time (early on especially it seems to me)…but we must remember to take it off for a spell now & again too! Sometimes, even understanding others will help us carry it at times also–as you may have found in a friend who just lost her husband. I have Faith too–can pray for all pALS & caregivers!