Do you ever feel “survivor’s guilt” about being a slow progressor?

[Dagmar]

I do. I’ve had acquaintances with ALS who’ve passed on from quickly progressing symptoms. Whenever I interact with their surviving family members, I feel guilty I’m still alive and their loved one isn’t.

I try to support the ALS community through my blog and Living Well columns. Hopefully, I can motivate others to take advantage of the latest research showing symptoms are slower from proper medication, good nutrition, good sleep, gentle exercise, and an optimistic mindset.

[Douglas M Clough]

I do not feel survivor’s guilt top often. After 11+ years I have known people all across the age range and length of time living since Dx. I felt more survivor’s guilt when I know pALS and cALS die without reaching various “events” or desires. I have 10 grandkids. I know some who have died never having a relationship with someone else. Some don’t see their kids get married, graduate, become a teenager (yikes), go to Kindergarten, etc.

There have been times when I feel some guilt in all the life experiences I have done through other peoples efforts. Those things truly are gifts. But I realize that I am out there doing one or two things with various ALS organizations They were given or donated because of shared interests, thanks, publicity (a logo or talk at an event).

None of us know when we are going to die. We don’t even know if it will be from ALS. My heart hurts when I see someone I know pass before the see their kid attain or reach something. That goes away quickly when the family and friends thank me for whatever they say helped. My desire through all of this is to show that Iif I can do it, then it might encourage someone else to try something they might never have tried before.

[Timmy]

I have shared my story before here.

30 years of guilt. I couldn’t understand why, and I still don’t why. I rarely share my journey outside family members any more.

When I got the first DX in June 1997 with ALS I shared because of the unknown. I wanted to tell my family and friends that I love them.

With in 5 years I was already being made fun of, if that the right term. A family member met a friend of mine. Their conversation started out that the friend and I worked together and they asked my family member if they were related to a guy name Tim that’s been dying from ALS for 10 years now. They made it sound as if I was lying.

I have friends that still do not believe me and that’s okay.

Why, why me? Not why me for getting this disease but why was I able to work until retirement age after hearing the DX at just 42 years old.

I still do not understand. I’ve heard half dozen or more disease from 16 neurologists All start out with “Wow, really”? I’ve been called a interesting case. Oh lucky me! Not, not at all.

I have printed so much information on those diseases along with ALS information I have filled binders with it.

Hope came with every different DX. But when rounds of testing, exams, MRI, EMG, Nerve conduction, muscle biopsy, treats for those diseases that mimic ALS, spinal taps you name it concluded it was most likely ALS I was back to June 1997 receiving again. Each time wasn’t easier. Life one member said dying in slow motion.

Am I thankful I’m still here yes of course but the guilt of why is strong.

This last year I have progressed more than all the years combined.

Keep a positive mind, and remember Drs say they are practicing medicine for a reason, because they just don’t know how the human bodies work the way it does.

Have the best day possible.

[richard-l-wheeler]

No

[jane]

I wouldn’t say guilt exactly. I feel great compassion for anyone with ALS but particularly those who are diagnosed at a younger age and/or are progressing more quickly. I usually don’t share too much about myself and wonder if some question my diagnosis because of my slow progression. Jane

[Dagmar]

Yes, I agree with you Jane – – I especially feel empathy for those diagnosed at a younger age.

[Elaine Atchison]

No..I feel very blessed to live 11 years with ALS. If I read of some one only lasting 3 years; I feel even more blessed bc there is a reason I am still here. Just isn’t my time yet.

[Peter]

No, I think that patients with a slower progression should take more responsibility for the whole group of people living with ALS, as they have more time to pursue projects and don’t have to deal with the disease on a daily basis.

[John Walker]

So what do you suggest we do Peter? I have slow progression and that means I’m dying in slow motion. I’m like a guy jumping off a cliff, but the whole scene is in cinematic slow motion. Do I turn to my left or right and that will save my life? No, I’ll still wind up on the rocks below. I just have longer to contemplate the end. Why do we slow progressors have to take more responsibility for the whole ALS group because we have more time? I have more time to pursue projects? What projects? Your projects? What about my projects? I had a whole retirement planned. Now I’m just trying to make sure my wife is in good shape when I’m gone. Will you be here to pick up where I leave off regarding my state of affairs? I take on other projects so I don’t think about the ground rushing towards me in slow motion. I have a neighbor whose mother-in-law just found she had ALS. I tried to reach out but I was rebuffed. People that want help, probably need it and will accept it when it’s offered. That’s a characteristic of our age group, raised with self sufficiency and pride. I imagine the groups that follow us will demand the Government save them. We reap what we sow, but that’s another story. I keep busy by being an administrator for a group of 260 fellow retired employees on Facebook. So every 2 or 3 weeks it seems someone dies. in our group. We’re old! I’m 70. The first thing I think of is “what did they die of”. That’s a typical human response. It doesn’t matter so much what kills us on reflection because all of us will eventually die. All we survivors can do is comfort the spouse/immediate family. I present articles/memes/shared posts about our industry and stories about fellow employees to keep the group going. So what do you do for the ALS group Peter?

[John Walker]

I don’t feel especially guilty for living 12 years since I’ve had symptoms, and 5 years since my diagnosis. I’ve been really busy trying to find a cure. One thing I’ve learned from my engineer career, if your solution doesn’t work then start throwing stuff against the wall. Something will stick. There’s a cure out there, but nobody has found it yet. So I roam the internet a couple of times a week looking for clues. On a daily basis I take care of myself. I wake up and it’s hard to move. That’s one of the ALSFRS questions, No.7 Turning in Bed and Adjusting. I’m a “3” but leaning to a “2”. Finally I make myself get up, use the bathroom and drink a cup of coffee that my wife has left on a cup warmer by the bed. Check my sleep score from my Fitbit App and watch the news and go over my phone for messages, FaceBook posts and emails. I have a headache but I’m fairly certain it’s not due to a respiratory shortfall of motor neurons to my diaphragm and intercostal muscles. By the end of the cup of coffee, I ready to begin the process of getting up. This takes about a half hour. I insert my pee pad and put on my clothes. Since I can’t walk this takes a bit, but my legs seem to be getting better. 5 years ago, I rode motorcycles. I reason it might take 5 years before I can ride again. I rode for 50 years since I was 15. I haven’t walked without a rollator for 2 to 3 years, so I need to be patient. I am going to walk again. I don’t think I’ll go back to work if I can walk. I need to spend my retirement as I had planned, working on my motorcycles, taking a couple of long trips a year and spending time on my other hobbies and house/yard maintenance. I lay my pants/shorts on the floor and put one foot in and pull it up. Then I do the other foot. Then I stand up to pull my pants up and button my waist. There’s the trick, standing up. I stand up with the back of my legs braced against bed sideboard and test my teetering balance. I button my pants and cinch my belt. Then I sit back down and bring a leg up to the top of the opposite knee to treat my bunion on my right foot with DMSO. I put on a sock and repeat for the left foot. Both big toes are a little numb from borderline diabetes. I guess people with ALS have other problems too! I put on my shoes and make the bed, after I take a couple of shots of Colloidal gold. My newest supplement venture along with Melatonin at night. The Aussies are working on a trial with Colloidal gold as I recall. The Melatonin thing is from a R.O.A.R. DIGAP Trial featuring research by GENIE-US that takes ALS Progression from 4 different potential root causes. This makes sense to me, as I’m an electrical engineer. I’ve thought of the problem from my viewpoint of Circuit Analysis. First you have a signal source, like a DCS in the Electrical Control world. The point of origination is in your brain. Then the circuit goes from your brain to the head and spine. The head is where the speech/chewing/swallowing problems happen. Your legs and arms come from the spine. The circuits end up at muscles where the motor neuron causes the muscle to contract. Extremely simplistic, but that’s my POV. The GENIE-US approach tries to personalize a treatment by putting you in one of 4 categories. The supplemental treatments are Astaxanthin, Protandim, Melatonin and MitoQ. I can easily afford Astaxanthin and Melatonin from Amazon, the other 2 not so much. I think of myself as a big white lab rat. Just call me Algernon. So I’ve been taking Melatonin and Astaxanthin for a few weeks. I make the bed and head off to the bathroom to continue my day. That’s my first half hour of functional activity. Then I go from the bathroom outside to the garage to my hobby room where I feed the 2 cats that live with my model train layout. This involves 2 sets of stepdowns with concrete floors to comfort me in case I fall. I’ve fallen here on concrete and it hurts. It took me an hour to get up. So I go outside and take my outside rollator to the Garage-Hobby Room. A half hour later I’m back inside making myself breakfast in the microwave. An hour later I’m done with breakfast. My whole day is like that. Careful measured steps on legs I pray don’t give out on me. I don’t feel “Guilty” for being a slow progressor. Guilt means you’ve done something wrong. I’m working hard to not be a burden to my wife. I fix my own breakfast and lunch, feed myself, dress myself, wash myself, mow the 6 acre yard and wash the dishes every night. That’s my contribution to the household. I don’t feel bad living in my own private hell that’s like a replay from “Groundhog Day”. It’s just my life. These are the cards I’ve been dealt!

[Amanda]

John-walker,

First I want to applaud you for a couple of things. Your attitude — between your motivation, willingness to find work arounds, and your humor!! Bravo! It’s clear that is making a difference. Second, I love the way you explain ALS the way your mind understands it. My father was an electrical engineer and I was able to follow along with your explanation. It does simplify things which is a good thing!

Have you been in any clinical trials or are you taking Riluzole or any other meds prescribed for ALS? Do you go to an ALS clinic regularly?

Please post updates if you feel comfortable sharing.

Amanda

[John Walker]

Amanda, thank you for your kind words. They are much appreciated.

I’ve asked my clinic about trials, but all the ones they are affiliated with, want people that have had ALS for 2 years or less. I asked a couple of times, but I gave up. I think my clinic is bored with me. Always the same ALS-FRS score and always the same answers to the same questions. I’ve been with a clinic for 5 years and they have new suggestions as long as you’re getting worse. It’s not their fault as there aren’t that many ALS cases vs. MS, Alzheimers, Parkinsons and a whole host of neurological diseases that they probably address in an effort to get the best bang for the administrative buck. Don’t get me wrong, as I appreciate what they do for people that need the help. I feel like they are a shared resource made to meet a demand, but not do any kind of research to find a cure. They are there to help me cope with any challenges as I degenerate. That’s why I follow Dr. Rick Bedlack from Duke University. He does full blown research into ALS and fast tracks trials it in a responsible manner. I like to listen to his talks and watch him. He’s a first class unabashed nerd. My kind of Doctor. Regarding my clinic, my first visit was in-person and the rest have been virtual, quarterly. During my last visit I asked to go to 6 month intervals and they were OK with that.

I took Relyvrio when it was offered and it was terrible. It gave me diarrhea and made me feel terrible. I quit it about a month before it was pulled from the marketplace.

I took Rilutek but I quit it early last year. It made me cough a lot and gave me brain-fog.

I take a lot of supplements, anti-oxidants and anti-inflammatory.

Thanks for reading my rant and to Dagmar who hasn’t kicked me off yet.

[John Walker]

Amanda, I reread my original post and I wanted clarify my simplistic representation of ALS as an electrical circuit. My point is, there several places where my circuit can go bad. I think there is a realization that ALS can have more than one cause. Genie-US seems to approach this point of view with trying to classify ALS in 4 Categories. I took a snapshot from Dr. Rick Bedlack’s hour long presentation you can see on YouTube. I liken CAT 1 and CAT 2 to a Circuit’s resistance. I think of CAT 3 as a broken circuit.

[Johnny5]

So what if these are the symptoms of something else?

[Amanda]

ALS has always been a disease where ruling out anything else was the initial step.

[John Walker]

These symptoms could be evidence of something else. For instance when reading about other neuro diseases, neuroinflammation is often mentioned as a bad actor. You are on this site because someone(s) has confirmed you have ALS. There is potentially more than one cause of ALS. Maybe it could be a perfect storm of causes/conditions. I’ve read somewhere , maybe on this site, that many that have ALS also have FTD. The number I recall seeing was 40%. As if you don’t have enough to worry about with ALS alone. MS and ALS used to be categorized as the same disease. It took my Neurologist 2 years to figure out I had ALS. She had to eliminate a whole host of diseases that included Parkinsons and MS. Finally I had an EMG test that completed my template of symptoms. So if you have to have a perfect storm of causes, then minimizing one of these contributors may slow down or reverse this disease. Let’s say I attack Neuroinflammation do I get well immediately? I don’t expect to. It’s taken me 5 years to get this far from my diagnosis. If I reverse today then I would expect it will take 5 years to get better, assuming I have zeroed in on the main cause and I am using the most effective treatment. Have you noticed the age of most of us with ALS? We’re approaching fossil hood. We are the age when a lot of people have arthritis, often blamed on joint inflammation. There’s that magic word again. So do you have a joint with especially bad arthritis? Why? Did you injure that joint or damage it somehow? So one of the potential causes of ALS is head trauma. I walked into a low pipe in my Powerplant. Twice. Within the same time frame like a week or two apart. I also had a Vasovagal Syncope condition. So I’d sit on the toilet, strain for a BM, and pass out. Anyway I’d hit a cabinet or floor on the way down. When I broke my nose I finally got my condition analyzed by a Heart Doctor and the solution (for me) was to drink more water. I was dehydrated, usually by a cold or the flu. So I’ve banged my head a lot. Is that why I’ve got ALS? Who knows. If that’s an absolute truth then all football players should have ALS. Some of them have a different characteristic disease of head impacts. That’s different or is it? We simply don’t know enough. I think treating neuroinflammation is a good thing at a time in our lives and other joint and muscle inflammation are more prevalent due to our age.

[Amanda]

Thanks! I think I’ve seen that presentation. I try to keep up with his information.

[Eric Jensen]

No. I think, “I have to suffer longer.”

[Johnny5]

I got used to it. 10 years ago on 27 Jul 2015 I got my first abnormal EMG, and over and over I see so many pALS progress much faster than I am. My brother was diagnosed in Oct 2015, he was gone 6 Jan 2016, and I am still walking.

I think a lot about this, like, is this really ALS? Maybe they will unravel some mystery and figure this is a variant of something else or not. But day by day, week by week, month by month, these years go passing by and so are my muscles.

There are around 85 million motor neurons in the human body. I figure my brothers were dying off at a rate of around a million per day. Mine are dying off by the dozens, or maybe a hundred, per day. Nobody is counting. But the specialists at the ALS Clinic know me by name. I keep showing up, and they smile widely when they see me. One day at a time, never quit.

[John Walker]

Good attitude! I think that is a major component to ALS survival. I wonder if ALS is a result of Nerve inflammation? In 2014 I stopped taking Celebrex and shortly after that I started experiencing the first early ALS symptoms. I started biting my tongue while eating and had to slow down. By 2018 I was seeing a speech therapist about by growing inability to speak. I also started seeing a Neurologist about it and by 2020 it was confirmed by an EMG I had ALS/Bulbar. After that my ability to walk started to deteriorate. Today I use a rollator to get around. I’ve been at the 30 to 34 level on the ALS-FRS for about 3 years now. Maybe one of the supplements I’m taking is reducing a Nerve inflammation condition. It’s like something is squeezing the pathway for Neurons. If so, then the blockage is located in or near the brain since both my bulbar and lower extremities commonly source there. This is just speculation of course and my guess is probably as good as anyone’s. One more observation from a fellow guinea pig. When I was able to run, I noticed my peak speed had lowered. No matter how hard I tried, I couldn’t run faster, as though the process to limit my peak speed had reduced. Maybe this observation will spark some sharp R&D Lab person.

[John Walker]

I’ve learned a lot from reading the replies to questions and observations about “Slow progression”. I think there is a lot to learn from us. We should be interviewed and have our blood analyzed, assuming we voluntarily do this. Our Ancestry, histories and genome should be compared. Maybe there’s a key in there. We’re too similar to not have a common cause for our slow progression. One striking similarity I’ve learned is noticing our good days and bad days seem to have cycles. My ability to walk with a rollator is cyclic. Somedays it’s so good I think about walking without a rollator. Then I have days when my legs hardly move. One person said they can still drive but there are days when one of the hands have to be lifted by the good hand and placed on the steering wheel. Then there are days when the weak hand/arm works better and can place itself on the steering wheel. We’ve all tried to tie the cycles to food, MSG intake, anything we can think of to no avail.

We might have a common ancestral tie to a region of the world and a comparison of our genome and the people in that region might reveal some clue. Maybe we have an oddball gene keeping us alive.

[Dagmar]

Or maybe we are keeping our bodies active and sharing a positive attitude?

I agree with you that someone should be researching slow progressers and looking for commonalities.

[John Walker]

I don’t feel guilty. At first I felt doomed! After my EMG test and the pronouncement by the testing Doctor, I definitely had ALS. I was devastated. I didn’t eat much for a month and then I slowly came out of my depression funk when I didn’t die right away. I started looking on the internet and quickly became tired of the introductory paragraph that explained what ALS stood for and what it means. Lou Gehrig ad nauseam. No disrespect, but you can read it so many times. Then I read some history of it dating back to the early 20th century with Edgar Cayce. I’ve read about the different possible causes and treatments for about 5 years now. I follow Dr. Richard Bedlack because he is a doctor that is focused on only ALS. I think a lot of clinics address several different diseases similar to ours and that may dilute their focus, after all there aren’t that many of us to warrant exclusive attention. Armed with my Amazon membership I started trying different supplements. I’ve kept track of those supplements and recently put them on a chart that includes a graph of my FRS numbers. I don’t think I’ve found my particular silver bullet, but I’m still trying. And for some reason I’m still alive.

[Dagmar]

john-walker, I can relate to your frustration following your diagnosis. Seems the mediical experts know more about how to describe ALS than the cause, the treatment, or cure. Dr Bedlack is a dedicated neurologist and I follow him as well. As far as supplements go, Dr Bedlack hasn’t found them helpful – – I take zero supplements and am in my 15th year of ALS. My advice is save your money.

[John Walker]

Has Dr. Bedlack found supplements to not be helpful in the context of those who die quick versus those of us who die slow? Maybe the cause or progression of the ALS condition occurs for years before we seek treatment. Some of us don’t seek a medical professional until we suffer for a long time. Many agree the GI tract plays an important role in our disease. As we get older the efficiency of the GI tract may degrade and an important ingredient is minimized over a long period of time that our body needs to stave off ALS. What is that ingredient? No one knows for sure, but there are plenty of guesses out there. Albeit those guesses have more scientific basis, for the most part, than I would put forth since I am not an R&D scientist in molecular biology. It’s taken me over 10 years to degenerate to this level, so I don’t expect improvement overnight. We are “Slow Progressors” and as such, is it possible we have a borderline deficiency of whatever we need to fight off ALS? Maybe a supplement, over a protracted period of time can improve our condition, or even reverse ALS. I for one cannot sit and wait for someone to save me. I feel I must do something because doing nothing just creates despair. Don’t you feel good when you you take steps to resolve a problem than simply sit back and think about it? I feel great when I begin to fix my problems. It may not resolve my problem but it makes me feel good to do something, so I stay the course of supplements. I’ve plotted my ALS-FRS score for the last five years and I’ve spotted my supplements on that timeline. I can’t vouch for any specific supplement and some I’ve taken for 6 months or longer. Some I’ve taken for years. I can vouch for a treatment to my hand spasticity which I researched seperately. Magnesium Glycinate has been effective for me, for the past couple of months.

More importantly, my supplements give me hope. Dr. Bedlack has stated that hope is important for not only those who suffer from ALS, but any disease. Attitude is a difference maker. So Dagmar, can you give us any advice on how you maintain and boost hope? What works for you?

[MJC17]

I was diagnosed with Bulbar-onset ALS in April 2024 and have been told by my interdisiplinary team that I’m a slow progressor. However, the last month has been a real “downer,” in terms of ALSFR score. So…I’m thinking the term “slow progressor” is not always used in the same way. I see the “living past the predicted 3-5 year prognosis” line at the top of this post and wonder if my team is just trying to be encouraging. Since each case is different, it seems impossible to know where you really are in terms of progression, so the adage of “seize the day!” seems quite fitting.

[John Walker]

Hang in there MJC!! Find something that makes you laugh, like a comic, or movie or TV show. Your state of mind is important. When I feel down I try Netflix or Amazon Prime. Lately I’ve dialed into Ancestry.com and mapped my family’s roots. It’s expensive, like $50/month, but I figure between now and dead won’t be long, so what the hell. I’m not spending any of my retirement savings on retirement, at least not the one I planned. Figuring out your Ancestry is a good exercise in logic, at least with their software logic. It keeps your brain going and it actually made me feel better. So find something like that and feel better. An old something or new something. MOVE! That’s an order.

[Hondo]

I also have been told I have slow progressing ALS. Initial symptoms start 1/2023 as loss of both feet coordination . Initially diagnosed a Gillian Burre Syndrome. Did the week of IVIC treatments. Nothing. Next diagnosis was a couple of lower discs pinching on nerves. Diagnosis confirmed by outside second opinions. Had back fusion surgery in lower spine. Nothing. That started every test, blood work, ENGs, MRIs etc that Neuromuscular doctor could think of including 8 weeks of mild IV chemotherapy. Nothing. Left with ALS as it crept up my feet, calves, thighs and hips. Holding pattern with upper body hanging in.

I feel no guilt, the only thing I feel is a slow death which eats me up every single day. I have isolated myself, which I know is worst thing to do, but since the longer it goes on the easier it become.

Guilt….not even a thought

[John Walker]

Man, you had a lot of serious procedures before they figured it out. I would have thought an EMG would have been a tell tale item. Did you have any voice/swallowing problems? Can you get around on a rollator? That’s where I am. I can’t talk well. Hopefully you can still talk. Do you have any friends who you can kid around with? I think a sense of humor can help. Try it!! Can’t hurt.

[Alton]

I was diagnosed with ALS on June 30, 2021 but had some issues that begin 18 months before that. So I have had ALS for 6 plus years. I do not feel bad that I have already lived this long. I have been Blessed by the Lord in many ways with All the items I have that help Me live with ALS. And I My Wife, Delma, has provided Me with Loving Care and Showed Me Love Every Day.

I am ready to Leave the Earth and be in Heaven but I will Listen and Wait to find out when that will be.