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ALS Life Expectancy vs. Quality Of Life
I can’t be the only person who sees a disconnect between the average ALS life expectancy and the quality of life one has once diagnosed.
My impression is that a very large majority of the population is unfamiliar with ALS, as I was prior to my diagnosis.
People unfamiliar with ALS hear/read/google that people with ALS live on average between 2 to 5 years, a few live 10 or more years after diagnosis and then there’s the mention of Steven Hawking who lived 50 years with the disease.
I’ve heard people say Steven Hawking lived 50 years, so there is a possibility that a cure will be found while you’re still living. First, Steven Hawking was an ALS longevity anomaly. Also, did you ever see him? I wouldn’t exactly call his life “living”, especially if you were an active person before your diagnosis.
People familiar with ALS speak in terms of the ALS Functional Rating Scale, which represents their functionality, their quality of life.
If the general public, law makers, researchers, FDA were more focused on the quality of life (or lack of quality) a person with ALS has instead of the number of years they live, then perhaps there would be a greater sense of urgency in curing ALS.
A few questions:
- Am I the only one who thinks this way?
- For those people that are unfamiliar with ALS, how do you bridge their knowledge gap between ALS life expectancy and quality of life?
- Is it really necessary to distinguish between life expectancy and quality of life when it comes to accelerating an ALS cure?
Richard
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52 Replies
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Richard,
I am more concerned with quality of life than life expectancy. If I live 10 years and 6 are immobile and dependent on someone else, that doesn’t sound like living. My neurologist likes to say it’s about living longer, but for me it’s about having quality not quantity.
This is just my opinion, and I might feel differently if I had young children. -
Richard
I sure understand the sentiment. I know at least several of the studies I’ve read define survival endpoint as not needing a trach. After that, “life” certainly can be extended. Quality of life is sure what everything is about in clinics. I think it all works out the same for research towards either stopping/drastically slowing progression or for curing. So sadly, when I thought of ALS before I became a pALS, I didn’t think of rapid death so much as someone trapped with a conscious mind and failed body. I didn’t even realize before that ALS killed so many before 3 years.
Bill
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Its all in the mind of the PALS I think. Some people get depressed and that has a big impact on outlook. Other people have become famous because they refused to let ALS destroy them. A lot of people I talk to say the quality of life is gone if you are stuck in a wheel chair, but most of them are not in the wheel chair. So when we talk about quality of life, it is in the eyes of the individual, not a measurable difference that applies to everybody. While some of us will be optimistic, others are pessimists. Lots has been said about the attitude and outlook of many PALS. I would rather follow that path if at all possible than to live life everyday projecting gloom and doom for tomorrow.
Today is the best day of my life. Tomorrow will be even better because when I wake up, it will be today.
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I agree! Attitude and outlook affect our mind-body connection, which in turn has an effect on our health. Studies show that having a high sense of well-being extends life for ALS patients.
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Your attitude will determine your altitude.
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John, I agree with everything you wrote whole heartedly! Our attitude, (pALS, caregiver, pre-fALS, everybody) is a big factor on our quality of life. Thank you John!!
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Perhaps there would be a greater urgency in finding an ALS cure if instead of countless articles saying:
“The average life expectancy after diagnosis is two to five years”was changed to:
“The average quality of life expectancy after diagnosis is one to two years”“In the end, it’s not the years in your life that count. It’s the life in your years.” Abraham Lincoln
Richard
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Yes, state the average.
Because, nowadays the needle is moving. More ALS patients ARE living longer (better care, earlier diagnosis and targeted symptom treatments).
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I agree that the quest to live longer with ALS is pointless if the quality of life is zero. Not only does one with advanced ALS have to suffer with the disease as it continues to worsen day by day, but the burden others have to endure caring for your every need 24/7 is cruel. There is a huge difference between ‘life’ and living. I am well into my second year with this horrible disease, wheelchair bound and 100% dependent on my wife and caregiver for everything, and I mean everything. It only gets worse with each passing day with no hope of an effective treatment in sight, let alone a cure. Why would anyone want to prolong the inevitable pain and suffering any longer than necessary? Not me. It is what it is. I would prefer to end it sooner than later.
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Hi Frank, very sorry to hear the state of your current condition.
Biogen’s decision (today’s featured article) rejecting early access doesn’t help the situation.
They say it’s the darkest before the dawn. However, for pALS, it’s the darkest before it goes completely dark. ALS is a conveyer belt of problems. We are all in the gutter, but we have to continue to try looking at the stars.
Thoughts are with you, hang in there!
Rich
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I fully agree . Quality of life is much more important.
I am saying that both as a rapidly progressing patient and prior Physician.-
Hi Richard. I’m hangin’ in there day by day, but I see nothing but quickly fading stars out there and know they will all eventually fade away into total darkness while I sit here and continue to suffer with this dreadful disease. I see no logical reason to prolong the inevitable. The sooner I leave the building, the better.
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Hi Frank,
I totally understand how you are feeling. It’s difficult knowing the future will be worse than the present and that there is no cure for this horrible condition. I guess all we can do is try to cope as best as possible and take care of our mental and physical health. Take care and best wishes.
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Hi, Victor. There is one last hope I cling to. Doctor Rick Bedlack, head of the Duke ALS Clinic, has found 60 people who rapidly progressed to Hospice care and then reversed, as in fully recovered. So I’m not giving up. I fully intend to reverse, if they don’t find a cure first. 🙂
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Hi Kathy. Yes, all we can do is try to get through every day as comfortably as possible and be thankful for loved ones and caregivers who do their best to help us day in and day out. God bless them. I don’t see any reason to hang on to false hope when we all know that our future will only bring more pain, suffering and misery. That’s no ‘life’ for me.
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Bill – – Dr. Bedlack found 40 people who were diagnosed with ALS, and, each was able to either plateau their symptoms or the symptoms disappeared. A few were in Hospice, the majority were in the first 1-4 years of ALS. Varying symptoms.
Dr, Bedlack is currently reviewing their files and verifying their original diagnosis… as well as looking at any commonalities among the group. So far, he has identified 4-5 supplements. He has chosen Curcumin as the first supplement that he will put through a follow-up group study.
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Thanks Victor. I agree. Without any ‘quality of life’ what is there? Nothing but suffering in misery for months or years until you die? Makes no sense to me. I’m ready to go right now.
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Hi Bill. Would you know the name of the supplement(s) that those 60 people may have been taking that had reversed ALS?
Rich
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Richard – – They took a variety of supplements and tried a variety of alternative (and sometimes “way-out”) treatments. Only 4-5 supplements were found to be common among the 40 patients.
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I’m taking several supplements that I hope delay my decline in quality of life. I can’t say if these supplements are slowing the disease progression because there is no definable timeline for disease progression. However, I do know that these supplements have not stopped or reversed my decline. I’m trying the supplements suggested by the Untangled and Patients Like Me websites. Here is my supplement list:
Curcumin 90 mg x 2
Black Seed 1000 mg
Men’s Vitamins Gummies
Protein Powder Whey 1 Scoop
Nutritional Yeast 1 Tbsp
TUDCA 500 mg x 4
ALCAR 1000mg
Riluzole 50mg x 2 (prescription)
Moringa 500 mg x 2
Gotu Kola 425 mg x 2
Lithium Orotate 10 10 mg x 2
CoQ10 100 mg x 2
L-Serine 1000 mg x 2
NAC 600 mg x 2
Turmeric Curcumin 600 mg x 2
Protandim 675 mg
Alpha Lipoic Acid (ALA) 300 mg x 2
Taurine 1000 mg x 2
Nicotinamide 500 mg x 2
Pterostilbene 100 mg x 2
Lion’s Mane Mushroom 500 mg x 2
TRU Niagen 300 mgRich
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A note to our members: this list posted by Richard is only a list. They have no claim to have improved or “cured” ALS.
I’ll share that I am at 11 years living with ALS. I feel I have a great quality of life: I walk with a rollator, eat normal food and still can talk – – – I never took any supplements (only my daily Riluzole medication) for 9 years.
Only 2 years ago, after much research and reading Dr. Bedlack’s report, have I begun Theracurmin. It is shown to be anti-inflammatory, helps with memory and digestion. I don’t expect it to “cure” me. But it helps my quality of life 🙂
Having spent my professional years in the wellness industry, I have learned to be skeptical of what supplement sellers claim. The ambiguous statement, “helps support nerve health” is a red flag that the contents are “hope in a bottle.” 😉
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Richard
i don’t know what the reversals are taking. I know that’s part of what Dr Bedlack was investigating. I think that is where his Theracurmin trial originated. I think the lack of any big aha’s is telling. I do take the Theracurmin 90 mg x2 purely on reading Dr Bedlacks stuff. Vitamin, fish oil, B12, magnesium are only other. Who knows if anything helps with ALS but I expect some make us feel better. I mainly concentrate on adequate sleep and enough nutrition to avoid weight loss. I think I need to give my cells enough energy to assist their fight.
All our ALS are definitely different subsets of this beast. -
Frank and Victor, I too feel the same as you. I’m hoping that some sort of treatment may be found soon. I attend the Massachusetts General Department of Neurology Healey ALS Platform Trials webinars. They talk of trials that sound promising. There is a Q&A webinar every Thursday 5:00 pm ET. The webinars are usually interactive, allowing you to ask (type) questions directly to the Healey Platform Trial Team.
See this link to register for Healey Platform Trial webinars:
https://lnkd.in/dKEt8WVIf you’re not familiar with the ALS Healey Platform Trials, you can visit this website:
https://www.massgeneral.org/neurology/als/research/platform-trialRich
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Richard,
As you stated, most people don’t know anything about ALS until they are diagnosed with it or someone in their family is diagnosed with it. ALS is very rare and I think it’s just that a lot more money and research is being put into finding treatments and cures for conditions that are more common, which is really unfortunate for pALS.
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Hi Kathy,
I agree with you 100%, most people don’t know anything about ALS until they are diagnosed with it or someone in their family is diagnosed with it – only the spoon knows what is stirring in the pot.
There are no shortages of research articles claiming potential positive results. However, you can’t propel yourself forward by patting yourself on the back. An ounce of performance is worth pounds of promises.
Richard
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Hi Richard,
I agree with you, and pALS don’t have years and years to be waiting for a cure. We need a cure now.
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Richard, I agree with you that the majority of the population are unfamiliar with ALS – – I think all of us with Sporadic ALS can say we didn’t know what ALS was until we were told we had it.
However, as we all quickly learned, ALS progression is not the same for every patient. Impossible to predict. That’s where the conflict of longevity vs. quality of life comes in. Both are ambiguous terms depending on who is claiming to know the definition.
Richard – – I disagree with your assumption that Steven Hawking was an anomaly and your assumption that he had little quality of life. First, he benefited from being able to financially support 24/7 caregivers. And could afford high-level assistive technology. I believe that his total life-long focus on discoveries in space and matter helped drive his longevity. He lived well – – he was well taken care of and he found meaning for his life. He didn’t seem to care about what others saw as a lack of “quality” to his life.
Second: the ALS Functional Rating Scale measures functionality, NOT quality of life. Did you know that there is another scale for quality of life: the ALSSQOL- Revised. https://www.pennstatehealth.org/sites/default/files/Neurology/ALSSQOL-%20Manual.pdf
It measures: 1. Negative Emotion, 2. Interaction with People and the Environment, 3. Intimacy, 4. Religiosity, 5. Physical Symptoms, 6. Bulbar Function. (see page 8 of the above PDF)
Here is the questionnaire: https://www.pennstatehershey.org/documents/22147/375615/ALSSQOL-20+Form+with+Logo/fd2bde44-6008-43b6-b191-766c5a2c9918
Finally, I believe longevity & quality of life go hand in hand. The only gap is in our own mistake thinking they are separate. With a high quality of life, we don’t focus on the “number” of years left.
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ALS progression is impossible to predict but some doctors tell you a certain number of years you are going to live and tell you to focus on the quality of your life and do things now while you are still able to ( like going on trips, etc.)
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Quality of life is more between my ears than it is in my suffering. If I let suffrage take over and hold on to the pity party of me having ALS, I miss out on the joy in my heart that makes life worth living. Who wants to live in a depressed state without any hope? I would hate that more than I could ever hate ALS! I have read many articles about PALS where the writer exclaims an amazement of how our courage and outlook is an inspiration. It motivates me so that I want to emulate that image, and it also shows me that I do not have to surrender to suffering. I do not need to have a pity party because I still have so much to live for. There are people who love me, and people I love that I want to spend time with. Every minute I have I can be optimistic about because my mind still works.
Now there is something that does jinx this entire thing. We, as well as those around us, are going to mourn that we are dying from ALS. Mourning is a 5 step process that must be worked through. Some of us will go from 1 to 5 quickly, while others will take weeks, or months. My best advice is to learn what mourning is, how it affects you (so you have an understanding about what it is doing in your life), and as you learn what it is, you can move through it and get it over with. Once it is done, and you have accepted this lot in life, find joy and happiness to fill your days. Time is too precious to waste.
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I agree with you, John. I guess I’m just saying that when doctors are not encouraging, it can make pALS feel hopeless. My therapist said that the way doctors communicate things to their patients is very important and she wished that doctors had more training in having empathy and compassion for their patients. I agree with you that it’s not helpful to let depression and negativity take over your life. Like you said, acceptance is important and we need to make the most of the time we do have. This can be very challenging but all we can do is try to cope as best as possible and try to stay positive.
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For me quality is not defined by whether you need a wheel chair or breathing assistance. I have worked in the disability field for most of my life and maybe that helped. I have friends who have used wheel chairs or communication devices their entire life. They have had full lives.
When I was diagnosed last August, I went through a period of panic when a neurologist told me I might have a year. There was so much do and so little time. However, I got to an ALS clinic and the neurologist assured me that there is great variability between PALS. More importantly, I was surrounded by people who knew how to improve the quality of life for PALS. I have banked my voice, have an effective exercise routine, and use a bipap at night. I am in the Healy Platform Trial. My symptoms have stabilized. Who knows how I will “progress”.
For me, quality of life is defined by being able to connect with family and friends. I am blessed with a wonderful family, a devoted partner, and great friends.
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Well said Tom! My Reiki Master recommends accessing all the medical and environmental tools I feel will help me, identify supportive positive friends and family and focus on those relationships. Staying calm and positive will allow my inner body to be open to healing.
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Quality of life is subjective.
If you were a person who enjoyed and sought out physical activity, then being wheelchair bound with the loss of most/all muscle movement, I feel it is not going to be a high quality of life for you.
If you enjoyed low physical activity, reading books and watching shows/sports on TV, then you may not feel the loss of life quality as much as someone who enjoyed and pursued hiking, MT biking, skiing, rollerblading, body building, beach volleyball, basketball, yard work, gardening, etc.
In addition to physical activity, if you were the type of person who minimized the dependency on others and maximized the dependency of others on you, then I feel it is not going to be a high quality of life for you.
I’m not saying you can’t still find meaning in your life, it is just that the quality has diminished.
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Hi Marianne and Richard,
Thanks for your responses. I have always been a physically active person, swimming, skiing, hiking, and biking. I miss this terribly. However, I do not have a choice with my ALS. The choice I do have is to live life as best I can. Spending more time with loved ones is a gift.
Tom
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Bravo Tom 🙂 We share the same positive attitude!
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Tom, You are correct, live as best as we can. Time is our least renewable energy. Learn from others when possible. It’s better to light a candle than to curse the darkness, for no matter how tall the mountain is, it cannot block the sun.
Rich
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Dagma,
Your writing has meant so much to me.
Thank you,
Tom
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Tom – – thank you 🙂
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Richard,
I was a marathon runner, skier, hiker, etc. Never watched TV. Had a professional career.
Yes I miss it, I grieve about what I have lost. But what choice do I have? Wallow in the tragedy of it, or move on with the hand I have been dealt??
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What constitutes quality of life is very personal, as Richard stated above. It is also a moving goalpost. A landmark loss — like having to be in a wheelchair — may seem intolerable when one isn’t in a wheelchair. But once in a wheelchair, it may seem hard but still tolerable. The power of the will to live can’t be underestimated, and everyone has their own personal line in the sand — that even they might not be able to predict.
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Richard,
So well said.
Thank you,
Tom
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I lost two cousins to ALS, I have the same symptoms as the first one was afflicted with. His sister was diagnosed with familial ALS. Her twin sister died from Cancer before the brother did.
Terminal diseases, in general, do not allow a victim to maintain a quality of life. My first job after grad school (Health Care Administration) was as a Nursing Home Administrator. I remember that experience from 45 years ago. We had a lot of patients who had terminal diseases. Before Alzheimers Disease was identified (and still is not figured out) we, in patient care conferences, we referred to them as COBSY victims (Chronic Organic Brain SYndrome): Dementia, Alzheimers, stroke victims, cardiac, COPD, ALS, Myasthenia gravis, Cancer, and how many other maladies? That experience really ignored quality of life. Our staff did a good job of caring for our aggregate grandparents. Many had already lost their grandparents, some their own parents, some – siblings, some – children. In that kind of institutional care facility there was a lot of emotion, concern, and sympathy.
Now that I retired 15 years ago, on my 55th birthday, after having experienced a heart “attack” which resulted in one posterior stent. Four years later I got a second stent – anterior, and now my blood pressure and cardiac health is fine. I had a prostate issue which is now under control, but speech started slurring 18 months ago, my speech degraded, excessive mucous and saliva. Neurologists finally confirmed Bulbar ALS, which my male cousin started with as well. His sister started down in her feet and legs. We had an uncle who had multiple sclerosis. My conclusion is that I inherited genetic mutations as did the first cousin who was diagnosed with sporadic. So far my coordination and limbs are still okay, but at this point my slow eating and drooling are embarrassing.
My wife and I had health proxies made 12 years ago. Now I have to get a MOLST, Medical Orders for Life Saving Treatment. We thought health care proxies were sufficient. But clinicians can ignore them. A physician has to sign a MOLST and then other clinicians will respect and abide by them. I do not want a tracheotomy to breath or a feeding tube to be nourished. I do not want to degrade to become of vegetable. I don’t want to burden my spouse or our families and friends. I am confident that I will make it to 70, maybe 71 but not the statistical 77 or 78. Our to the ages my parents and some of my grandparents reached. My paternal grandmother made it to her 90s.
THe quality of my life has already been compromised. My uncle with the MS was in a wheelchair for over 40 years. I know that there are disabled people who adapt to their disabilities and still live incredible lives. If I can’t breathe normally or eat, which is already a problem, I don’t want our savings spent on keeping me alive. Like I said, I don’t want to degenerate to being a vegetable (I like vegetables but I am not a vegetarian or a vegan).
We spend and waste too much money on people with terminal diseases, like ALS, with no benefit to the individual who is afflicted.
My best friend, since 7th grade, retired from being a NYS Trooper. He was enjoying his retirement until he was diagnosed with a brain tumor. He underwent surgery (they removed as much as they could), radiation and chemotherapy, and went downhill for 27 months before he finally died. The impact on his family was difficult. He was smart, respected by all, and I will never forget his continuous and stressful deterioration. I am not going to go through what he went through. We have Hospice programs all over the country. Assisted suicide is legal in some of the European countries but not in ours. States are allowed to allow them. Maine, Vermont, New Jersey. Colorado, California, Oregon, and Washington do permit it and Montana does if a court orders it. Hospice seems to be our alternative. I am working with neurologists, and ALS center, and my Primary Care Practitioners (PCPs), and I have contacted our Hospice.
That is my choice. I think any family and friends of people with terminal diseases are more sensitive to ALS victims other terminal disease victims and their families. For that matter a widow, widower, and children who have lost a loved one may also be sensitive to ALS and any other terminal disease victim.
The only reason for length of life instead of Quality would be for helping the production of a cure that is effective and corrective. Dr. Jean-Martin Charcot figured out the disease 152 years ago in 1869. ALS is not in the top ten or fifteen causes of death. Pharmacological corporations are looking for profit and testing possible cures is expensive and takes a long time. The only way they will want to create a cure is if if will make their company richer and shoot their stock prices up. It isn’t to save our lives.
I am curious about stem cell therapy and genetic mutation correction (CRISPR). Some pharmaceuticals have come up with products that lengthen our lives but there are only two possible cures, at this point that I am aware of (NU9 and WVE-004). That is why I am focused on stem calls (our own) and CRISPR. I suspect the majority of Sporadic victims are probably descendants of ancestors who died before ALS started to kill them. I think we all have mutated genes and I think that genetic correction will be the best cure. Since ALS is not a big cause of death, numerically, genetic solutions will solve our and a lot of other causes of maladies and terminal diseases.
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I believe that, when you are diagnosed with ALS, you already have a diminished quality of life and it just gets worse with time. At some point you lose the ability to walk, talk, speak, and breathe. The mental and physical pain is so difficult to deal with and this condition is so debilitating and devastating in so many ways.
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Hi Kathy, your comment stresses the point of my original comment and the main purpose of this thread…
“If the general public, lawmakers, researchers, FDA were more focused on the quality of life (or lack of quality) a person with ALS has instead of the number of years they live, then perhaps there would be a greater sense of urgency in curing ALS.”
Yes, I agree with a lot of others who have commented; you need to stay positive, you need to find new meaning in your life, re-define yourself, be thankful for what you had and have, etc. However, not actively communicating to lawmakers, researchers, FDA, ALS support groups, foundations, etc. about the ALS diminished quality of life along with the snail’s pace of research and lack of substantial treatments only hurts yourself and future ALS patients. For a problem shared is a problem halved.
Rich
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