A continuous glucose monitoring device has allowed 73-year-old type-1 diabetic Richard Toon to (so far) live 13 years longer than doctors once projected. Now he's confronting ageism in treatment.
You’re fighting the good fight Richard. Not against diabetes (that too) but against doctors who say stupid things to patients until they themselves become patients.
I too when diagnosed with prostate cancer was told something else will kill me. Thanks Doc, great to hear. When my wife was diagnosed with leukemia one young cutie said, “it’s a no brainer if you get a bone marrow transplant. All you need is find a donor.” Duh! I just gave a talk to a support group for women with gynecologic cancer. The one husband in the audience--clearly worried--was “reassured” by her doctor that she had “already outlived the predictions”--implicitly so what’s the problem? 🤷🏼♂️
The problem is clueless doctors forgetting that their patients are more than their diseases--until of course, they become a patient and learn that they are mortal too.
Nov 6, 2023·edited Nov 6, 2023Liked by Sari Botton, Richard Toon
"Everywhere you see a worrisome ambivalence to our sustainability, especially in the mindset of “care might reasonably be relaxed,” once you’ve reached the desired yet expendable category."
You are right, I watch my husband do what you do: manage his diabetes with discipline and consistency. He is 81. His other skill is to communicate so effectively and so engagingly with his doctors that they stop thinking about his age abd see him as a person. This seems to be the greatest survival skill of all. It is also exhausting. I don't know how to do this and it frightens me some times.
And by the way: the ones who tell you that you can relax about prostate cancer because something else will kill you never once consider that living with untreated cancer while you wait for death by other means is painful and debilitating. I've watched two men go through this. I wouldn't wish it on anyone.
Doctors truly piss me off and I come from a family of doctors. One doctor told my 26 year old son who was born premature that he should be thankful. That was his diagnosis for my sons chronic ills. Another doc made my daughter cry because she (the doc) was so insensitive.
I do believe the patient’s mentality (and diet and movement) has much to do with longevity. Dr. Batty was indeed batty.
A few days ago I attended a memorial service for a type-1 diabetic who died in a motorcycle accident at age 18. He wore a similar device to Richard's and was expected to live a very long life just as his mother, a colleague, does. So does my cousin who is in her late sixties. I have to admit, before reading Richard's essay, I did not think that people like them had anything much to worry about in terms of longevity. So this was an education for me, and I thank Richard for sharing it.
I'm also the son of a mother who had Alzheimer's disease at the age I am now (72), but I don't worry about it. I can't move beads into stacks, either, but that is because I think in terms of words and have no ability to deal with visual information like that. I couldn't do those things in the test at my draft physical when I was 18! So I would only worry if I could see cognitive decline in my verbal intelligence.
i'm participating in a longitudinal study about brain ageing and dementia (I'm in my 50s). Those tests are so, so boring, that's my problem with them. Every time they send a round of tests there's about 3 hours of testing to do. They test you over and over and the whole process is exceedingly tedious. Any engaged and active mind would glaze over and drift when presented with such uncreative tedium.
Yeah but so are so many aspects of essential daily living: grocery lists, traffic, news, jobs, conversations with loved ones, the bi-monthly recycling schedule, etc. When we can’t/won’t do these boring things we lose our self-determination to a POA!
That’s why sites like this one are so precious. I’ve learned so much since stumbling onto it and others that astonish me with science, entice me with gorgeous words and pictures and challenge me to think critically of ‘normalities’ previously invisible.
What's a POA? I agree that there are lots of mundane things that we constantly need to keep track of, but they are essential to our daily functioning and therefore easier for me to keep in mind. As for ordering geometric shapes on a computer screen or stacking virtual balls - who cares? I was just as bored by these activities when I was a youngun'.
Power Of Attorney: when other people decide that your Activities of Daily Living (personal hygiene, housework, bill and general money management, personal health maintenance, even attitude) aren’t up to their standards and need to be taken over AND can convince your doctor. They can sell your house from under you, charge outrageous fees, and worse. Of course it can be a necessary relief as well. Plan ahead.
I feel the same way about dumb games. I want there to be some kind of point to it. It’s called ‘trivial’ pursuit for a reason, no? Visual field tests are crashingly boring, I get yelled at for looking away. Can’t help it.
Thank you for sharing, Richard! I learned much from the article, including a reminder of how important it is to take care of ourselves, on a daily and perhaps hourly basis for you, and how present actions can improve or take away from our longevity. My personal goal is to live to 105, healthily, and consciously take actions to bring that about (as tedious as that can be, day after day and week after week!).
How did I choose 105? It started at 95, actually, quite a few years ago. There was a retired priest who would come substitute for our parish priest on occasion, driving himself two hours to our church, preside over Mass and give a great Homily, then drive back that day after doing a second Mass a couple hours later. He was 95 at the time. Then my goal jumped to 105 a few years after that when I went to the local hospital for a test. An elderly gentleman volunteer asked if I knew where I needed to go. Since I did not, he held on to my arm and walked with me down the hall. He then told me he was 105! I don't think he was still driving but he was mobile and coherent and in great shape for 105. I know, I know, that's ageism, "great shape for 105", but that's what I thought and that reset my goal from 95 to 105. I figure if he can do it, I can too! I'm 69 now, and so far so good, LOL!
Richard, thank you for sharing this -- I had no idea how far we've come in living with type-1 diabetes. But you also nailed my current pet peeve -- the use of the word "older" when talking about people and disease and treatments. Older than what? This was rampant during the COVID years, when it was critical to get precise information to people -- and yet we heard officials from CDC and NIH and the White House talking about "older people" being at risk, "older people" needing this or that, "older people's death rates, etc. What age, precisely, were they talking about?? I've now made it a point to call this out whenever I hear it -- medical people need to speak about risk accurately and precisely, not in some vague (and pejorative) hand sweep of words.
Nov 6, 2023·edited Nov 6, 2023Liked by Richard Toon, Sari Botton
What an excellent and insightful piece of writing, Richard. I am so glad that you are an example of exceeding the statistics. I come from a family of Type 2 diabetics, and am fighting my own battle to exceed their lifespans and avoid some of their complications. You are so right about health insurance/Medicare, which has such arbitrary and frustrating rules. A Type 2 diabetic who is not on insulin can't get coverage for a CGM. Why not??? Instead I stick myself several times a day to self-monitor. On the other hand, I have a very kind, empathetic doctor and a savvy, also kind dietician who have been very supportive, so I am fortunate in that.
Richard, congrats on defying the odds! "We are all cyborgs now [sic]", and I for one couldn't be happier with the opportunities to live longer. I'm really glad this worked for you.
Our health care system is jacked. I hope we can fix it within my lifetime.
such a great post. and this line: "I think cognitive deficits are like the blind spot in our vision—your brain compensates and papers over the hole." i'm glad you beat the odds, richard, even if our healthcare system shrugs about it. life IS good, and better with you in it!
The saddest part of your story is that carefully placed comment that life expectancy in the US is decreasing.
Sad both absolutely because years count, as your story points out, and relatively because that isn't the case in almost every other country in the world.
You've been a diabetic about as long as I've been a nurse, so we've both witnessed many technological improvements. I'm glad we're no longer "dipping urine" as we did in 1982, but really, really relieved I didn't practice back when nurses were tasting urine for the presence of sugar. Yep. The things nurses will do for our patients.....
Love your attitude about aging and living with chronic illness, Richard -- pragmatic, somewhat amused, observant, instead of the usual bromides about aging boldly or some damned thing.
I'd add that doctors are notoriously callous no matter how old you are. When I was in my 30s and worried about a shady mammogram, my gynecologist asked about my insurance coverage. After I told him, he announced, "Well, then, you're screwed."
I stalked out of his office. That was 40 years ago, but who could forget a guy like that?
Those types of Drs are still around, just not as verbal. But their questions and attitudes are just as harsh. Maybe they have Tourrettes?
A huge HMO on the west coast is trying to cut off patients’ legal rights by forcing arbitration agreements to even access our own damn medical records. The rampant misinformation of COVID may be the origin of that, but it’s gone way too far.
Thank you Richard. Amazingly I've never know much about living with Type 1 Diabetes, but have always been curious about the wall of gismos at the CVS. So I know there are lots of people out there doing what you've been doing most of your life. Thank you for sharing.
I love this point about how ageism works in healthcare advertising and treatment--we want to sell to you, but we don’t want to look at you.
So true!
You’re fighting the good fight Richard. Not against diabetes (that too) but against doctors who say stupid things to patients until they themselves become patients.
I too when diagnosed with prostate cancer was told something else will kill me. Thanks Doc, great to hear. When my wife was diagnosed with leukemia one young cutie said, “it’s a no brainer if you get a bone marrow transplant. All you need is find a donor.” Duh! I just gave a talk to a support group for women with gynecologic cancer. The one husband in the audience--clearly worried--was “reassured” by her doctor that she had “already outlived the predictions”--implicitly so what’s the problem? 🤷🏼♂️
The problem is clueless doctors forgetting that their patients are more than their diseases--until of course, they become a patient and learn that they are mortal too.
Fabulous and informed comment!
Thanks Laurie--stick around, I’m writing a piece that quotes you. IE
"Everywhere you see a worrisome ambivalence to our sustainability, especially in the mindset of “care might reasonably be relaxed,” once you’ve reached the desired yet expendable category."
You are right, I watch my husband do what you do: manage his diabetes with discipline and consistency. He is 81. His other skill is to communicate so effectively and so engagingly with his doctors that they stop thinking about his age abd see him as a person. This seems to be the greatest survival skill of all. It is also exhausting. I don't know how to do this and it frightens me some times.
And by the way: the ones who tell you that you can relax about prostate cancer because something else will kill you never once consider that living with untreated cancer while you wait for death by other means is painful and debilitating. I've watched two men go through this. I wouldn't wish it on anyone.
Doctors truly piss me off and I come from a family of doctors. One doctor told my 26 year old son who was born premature that he should be thankful. That was his diagnosis for my sons chronic ills. Another doc made my daughter cry because she (the doc) was so insensitive.
I do believe the patient’s mentality (and diet and movement) has much to do with longevity. Dr. Batty was indeed batty.
A few days ago I attended a memorial service for a type-1 diabetic who died in a motorcycle accident at age 18. He wore a similar device to Richard's and was expected to live a very long life just as his mother, a colleague, does. So does my cousin who is in her late sixties. I have to admit, before reading Richard's essay, I did not think that people like them had anything much to worry about in terms of longevity. So this was an education for me, and I thank Richard for sharing it.
I'm also the son of a mother who had Alzheimer's disease at the age I am now (72), but I don't worry about it. I can't move beads into stacks, either, but that is because I think in terms of words and have no ability to deal with visual information like that. I couldn't do those things in the test at my draft physical when I was 18! So I would only worry if I could see cognitive decline in my verbal intelligence.
i'm participating in a longitudinal study about brain ageing and dementia (I'm in my 50s). Those tests are so, so boring, that's my problem with them. Every time they send a round of tests there's about 3 hours of testing to do. They test you over and over and the whole process is exceedingly tedious. Any engaged and active mind would glaze over and drift when presented with such uncreative tedium.
Yeah but so are so many aspects of essential daily living: grocery lists, traffic, news, jobs, conversations with loved ones, the bi-monthly recycling schedule, etc. When we can’t/won’t do these boring things we lose our self-determination to a POA!
That’s why sites like this one are so precious. I’ve learned so much since stumbling onto it and others that astonish me with science, entice me with gorgeous words and pictures and challenge me to think critically of ‘normalities’ previously invisible.
What's a POA? I agree that there are lots of mundane things that we constantly need to keep track of, but they are essential to our daily functioning and therefore easier for me to keep in mind. As for ordering geometric shapes on a computer screen or stacking virtual balls - who cares? I was just as bored by these activities when I was a youngun'.
Power Of Attorney: when other people decide that your Activities of Daily Living (personal hygiene, housework, bill and general money management, personal health maintenance, even attitude) aren’t up to their standards and need to be taken over AND can convince your doctor. They can sell your house from under you, charge outrageous fees, and worse. Of course it can be a necessary relief as well. Plan ahead.
I feel the same way about dumb games. I want there to be some kind of point to it. It’s called ‘trivial’ pursuit for a reason, no? Visual field tests are crashingly boring, I get yelled at for looking away. Can’t help it.
Yes, I know what power of attorney is, just didn't know the acronym.
They’re easy to search. I need to use Urban Dictionary for the more recent slang, more often than I like to admit!
Great comment!
Thank you for sharing, Richard! I learned much from the article, including a reminder of how important it is to take care of ourselves, on a daily and perhaps hourly basis for you, and how present actions can improve or take away from our longevity. My personal goal is to live to 105, healthily, and consciously take actions to bring that about (as tedious as that can be, day after day and week after week!).
How did I choose 105? It started at 95, actually, quite a few years ago. There was a retired priest who would come substitute for our parish priest on occasion, driving himself two hours to our church, preside over Mass and give a great Homily, then drive back that day after doing a second Mass a couple hours later. He was 95 at the time. Then my goal jumped to 105 a few years after that when I went to the local hospital for a test. An elderly gentleman volunteer asked if I knew where I needed to go. Since I did not, he held on to my arm and walked with me down the hall. He then told me he was 105! I don't think he was still driving but he was mobile and coherent and in great shape for 105. I know, I know, that's ageism, "great shape for 105", but that's what I thought and that reset my goal from 95 to 105. I figure if he can do it, I can too! I'm 69 now, and so far so good, LOL!
Richard, thank you for sharing this -- I had no idea how far we've come in living with type-1 diabetes. But you also nailed my current pet peeve -- the use of the word "older" when talking about people and disease and treatments. Older than what? This was rampant during the COVID years, when it was critical to get precise information to people -- and yet we heard officials from CDC and NIH and the White House talking about "older people" being at risk, "older people" needing this or that, "older people's death rates, etc. What age, precisely, were they talking about?? I've now made it a point to call this out whenever I hear it -- medical people need to speak about risk accurately and precisely, not in some vague (and pejorative) hand sweep of words.
What an excellent and insightful piece of writing, Richard. I am so glad that you are an example of exceeding the statistics. I come from a family of Type 2 diabetics, and am fighting my own battle to exceed their lifespans and avoid some of their complications. You are so right about health insurance/Medicare, which has such arbitrary and frustrating rules. A Type 2 diabetic who is not on insulin can't get coverage for a CGM. Why not??? Instead I stick myself several times a day to self-monitor. On the other hand, I have a very kind, empathetic doctor and a savvy, also kind dietician who have been very supportive, so I am fortunate in that.
Ow! I sympathize. So glad you have good carers despite the ominous takeover of healthcare by heartless computers.
Richard, congrats on defying the odds! "We are all cyborgs now [sic]", and I for one couldn't be happier with the opportunities to live longer. I'm really glad this worked for you.
Our health care system is jacked. I hope we can fix it within my lifetime.
such a great post. and this line: "I think cognitive deficits are like the blind spot in our vision—your brain compensates and papers over the hole." i'm glad you beat the odds, richard, even if our healthcare system shrugs about it. life IS good, and better with you in it!
The saddest part of your story is that carefully placed comment that life expectancy in the US is decreasing.
Sad both absolutely because years count, as your story points out, and relatively because that isn't the case in almost every other country in the world.
Eye opening slice of life of account of Type-1 Diabetes from the POV of a patient. Thanks for share your story.
Thank you so much - I will draw on this for my teaching in health care.
You've been a diabetic about as long as I've been a nurse, so we've both witnessed many technological improvements. I'm glad we're no longer "dipping urine" as we did in 1982, but really, really relieved I didn't practice back when nurses were tasting urine for the presence of sugar. Yep. The things nurses will do for our patients.....
WHAT??? Omg.
It's true! And truly bizarre.
Love your attitude about aging and living with chronic illness, Richard -- pragmatic, somewhat amused, observant, instead of the usual bromides about aging boldly or some damned thing.
I'd add that doctors are notoriously callous no matter how old you are. When I was in my 30s and worried about a shady mammogram, my gynecologist asked about my insurance coverage. After I told him, he announced, "Well, then, you're screwed."
I stalked out of his office. That was 40 years ago, but who could forget a guy like that?
Ha! I like you already!
Those types of Drs are still around, just not as verbal. But their questions and attitudes are just as harsh. Maybe they have Tourrettes?
A huge HMO on the west coast is trying to cut off patients’ legal rights by forcing arbitration agreements to even access our own damn medical records. The rampant misinformation of COVID may be the origin of that, but it’s gone way too far.
Thank you Richard. Amazingly I've never know much about living with Type 1 Diabetes, but have always been curious about the wall of gismos at the CVS. So I know there are lots of people out there doing what you've been doing most of your life. Thank you for sharing.