No sooner had I written here about my diagnosis of pancreatic cancer in 2017 than people began telling me about cures, usually in other countries but some that involved eating large portions of “good” foods while eliminating “bad” foods.

Even before pancreatic cancer raised its head in my life, I was a firm believer in the view that if there were a miracle cure for any given disease we would all know about it.

And so, within a day or two of the diagnosis, I determined that I would follow the instructions the doctors and nurses gave me. After all, they've been treating cancer patients for a whole lot longer than I had even thought much about it and although there cannot be promises, they know what has worked – and not – over time.

When I was recovered enough from the Whipple surgery two or three weeks later, the chief oncology nurse sat me down for a lesson in how I would need to eat from that point forward. It was my first test in believing what the medical experts tell me.

Until then, I had maintained a simple, healthy diet for a couple of decades: lots of fruit, vegetables, legumes, etc., a hefty portion of fish three or four times a week with a sweet treat (ice cream, a chocolate croissant) now and then.

The nurse explained my new diet that would include four-to-six small meals a day with the kinds of proteins and fats I had not eaten in many years. I objected. She insisted. I tried to explain some more and she cut in: “The cancer will kill you long before the diet will. So do as I say.”

Yes, ma'am. Of course she was right and her instructions, modified to expand my food choices as time passed, have served me well.

Then, this year, along comes COPD. Recently, there was a nutrition lecture in connection with the pulmonary rehab I attend twice a week and guess what? The nutrition advice doesn't match. How to eat to help make living with COPD easier is a lot closer to how I ate before pancreatic cancer than how I eat now.

What to do? What to do?

Well, all right – it's not that difficult. I'm adjusting the conflicts between the two diets and so far it is working well.

But it does reinforce the idea that we – you and I, patients in other words – need to be responsible for our own health practices. It was easy before the COPD was diagnosed and I had just one condition to be aware of. Now I need to balance the two.

Old people are much more likely to have several diseases or conditions that must be managed and one kind of doctor – an oncologist, for example - doesn't know a whole lot about COPD and vice versa.

So it is our job to bring up the questions and conflicts when they occur, and that reminds me:

We old folks are the number one experts on our own bodies. We each know how ours operates, how it feels when it is working well and when something is not right.

We know what kinds of pain or other discomforts occur and we have learned how to treat them with the help of our physicians. And we know when something is wrong enough to require a visit to the doctor.

Some of you undoubtedly think this is all elementary and obvious, that you have always lived this way in regard to your health. But it hasn't been so to me. Let me confess here and now that before the cancer diagnosis, I hardly ever saw a doctor. I often went four or five years, maybe more, between visits.

I was just lucky that hardly anything happened beyond a bad flu now and then.

It is only now, living with two serious diseases, that I have come to see that it is up to me in a much larger sense than I had thought about before, to manage my health, tapping the knowledge and expertise of the appropriate physicians when necessary.

Remember a week or two ago when I wrote about my mother's saying, “Too young we're old, too old we're wise?” This is a perfect example of it and instances of my ignorance are piling up fast recently.

As you know, earlier this year I was diagnosed with COPD in addition to the cancer I have been living with for more than two years. For now, the cancer seems to just sit there slowly growing and doesn't get in my way day to day.

COPD, however, affects all my life when I'm not sitting or lying down. To not lose my breath, I walk slowly now - indoors and out - and when I forget, I pay for it, heaving to get my breath back as I grab for the rescue inhaler.

In old age, being short of breath might happen to anyone even if you're not a former cigarette smoker. A long time ago I read somewhere that after age 20 or so, people lose about one percent of their lung capacity each year, and when I asked one of my physicians about that, he told me that's basically correct.

So an occupational therapist has been added to my list of medical providers. It's her job to help me make the most of my life by showing me how to do everyday things that have become more difficult with impaired breathing.

At my first visit, she gave me a two-page list of instructions on how to conserve the limited supply of energy I now have, and I was surprised at how much of this I already do, have always done.

Things like avoiding unnecessary steps, mixing up heavy with light physical tasks, sliding objects instead of lifting them. Even the obvious things on the list are useful as reminders and I do them now because I must rather than, as before, because I can be monumentally lazy.

The section of the instructions that was mostly new to me and therefore most valuable was on stress management. I had noticed that when I'm running late or trying to control my anger (nay, rage) at the difficulties in sorting out my Medicare Part D options, I lose my breath even while I'm sitting still.

Stress, it turns out, causes shortness of breath. You may know that but I didn't.

Here are the instructions for stress management that appear to be simple, even obvious, but things I need to relearn in this new context. Maybe they are helpful to you too.

⏺ Set realistic goals
⏺ Live in the present, not the past or future
⏺ Think about what you can do, instead of what you cannot do
⏺ Accept what cannot be changed
⏺ Practice good posture and breathing techniques
⏺ Eat nutritious food
⏺ Learn from your successes AND your mistakes
⏺ Listen to your body
⏺ Save time and energy for fun
⏺ Ask questions; take control of your illness; don't let it control you

The instructions also cover Scheduling, Pacing, Simplifying, Organizing in addition to Stress Management. They are from the Physical and Occupational Therapy department at Oregon Health and Science University. Click below to download it.

Download the Energy Conservation instruction page

Until about 18 months ago, most nights I slept for about four hours; five hours when I was lucky. There was a time, more than a decade ago, that an evening dose of melatonin kept me asleep for the more traditional seven or eight hours and I felt so much better then.

But after a couple of years it stopped working.

I got by as I always had, toughing it out during the day when there were things that must be done. I was slow to twig to the fact that I now live in a state where cannabis (that's what we're supposed to call it now – I still think of it as weed or pot) is legal.

About a year-and-a-half ago, I began using a tincture of cannabis which kept me asleep all night, seven or eight hours, until it didn't anymore. Both a dispensary “budtender” and one of my physicians said that often, sleep aids of all kinds can stop working and suggested I try alternating types of cannabis. So now I use a gummy in between the tincture.

It's been working for me. Some friends have had less success. (I always use THC cannabis; CBD does nothing for me in regard to sleep.)

Insomnia is serious but common problem for old people. Even when sleep disorders such as restless leg syndrome, sleep apnea, pain or certain medications are discounted, about one-third of people 65 and older don't get enough sleep according to a 2017 University of Michigan poll.

Today's post is not about medical conditions that cause sleep disorders but I want to pass on what the National Sleep Foundation says about sleep apnea:

”...untreated sleep apnea puts a person at risk for cardiovascular disease, headaches, memory loss and depression. It is a serious disorder that is easily treated.

“If you experience snoring on a regular basis and it can be heard from another room or you have been told you stop breathing or make loud or gasping noises during your sleep, these are signs that you might have sleep apnea and it should be discussed with your doctor.”

Note that phrase, “serious disorder that is easily treated.” How often does anyone tell us that? So if you suspect sleep apnea or any other medical cause of insomnia, get thee to your physician.

When there is not an underlying medical reason for sleeplessness, there are other reasons it happens. WebMD tells us, there is

”...a big difference between younger and older sleepers: the timing of rest. As adults age, advanced sleep phase syndrome sets in, causing the body's internal clock to adjust to earlier bed and wakeup times. But some seniors continue to stay up late, as they did in their younger years. Sleep deprivation is often the result.”

Every source I read tells us that it is a misconception that people need less sleep as they age. Research shows that sleep need remains constant throughout adulthood – seven or eight hours.

Assuming there is no underlying medical reason you can't sleep or can't sleep enough, what's an insomniac elder to do?

There are always the prescription sleep potions, right? Ambien, Lunesta, etc. In an excellent article about elder sleeplessness, Consumer Reports warns against them noting that one analysis found that people using these drugs

”...fell asleep only 8 to 20 minutes faster than people taking a placebo.

“Taking sleep meds may also cause dependency and increase your risk of car accidents, and more than double your risk of falls and fractures, common causes of hospitalizations and death in older adults, according to Consumer Reports’ Choosing Wisely campaign.

“Because of these dangers, the American Geriatric Society includes the more potent prescription sleep drugs—eszopiclone (Lunesta), zaleplon (Sonata), and zolpidem (Ambien)—on its list of medications that adults age 65 and older should avoid.”

This can be true of some over-the-counter sleep aids too. And if you would be inclined to try cannabis, what if you don't live in a place where it is legal? There is no dearth of advice around the web. This is one of the better lists of useful techniques. From WebMD:

⏺ Get set. Wake up at the same hour every day and exercise and eat meals at set times to help get sleep back on track.

⏺ Get Exercise. Check with your doctor to see what type of activity is best for you, and then get out and do it. You might want to do it early in the day, though, so it doesn’t keep you up at night. A little sunlight each day can make a big difference too!

⏺ Get Cool. Keep your bedroom on the cool side. And turn off all those lights and electronics. Keep the TV out of the bedroom.

⏺ Get a Routine. Anything that relaxes you—a warm shower, a few moments of meditation, a good book.

⏺ Get Out of Bed. That’s right! If you are tossing and turning after about 10 or 15 minutes, get out of bed and do something relaxing. Just don’t turn on that TV or computer.

⏺ Get checked. Some medication or certain medical problems can interrupt sleep. If a medication is to blame, your doctor can recommend adjusting the timing or dose, or possibly switching to an alternative prescription. And if it’s a medical problem that’s stealing away your shut eye, she can address that, too.

There is another list from helpguide.org – a much longer list than above – that may be helpful.

The reason you're reading this today is that the cannabis, even with two delivery systems, has stopped working for me. Well, it's been only since Monday and maybe it is just a short-term anomaly, so I'm going to give it some more time before figuring out something new.

But in case I need it, I tracked down all this information so I'm passing it along to you.

I'm sure we would all like to hear about your own adventures in sleep – or not - too. Just remember that you may recommend NO PRESCRIPTION DRUGS nor any other treatment except in the context of what has worked or not worked for you. And no links.

It has been known for years now that loneliness can be devastating to the health and well-being of old people. According to a report from the National Poll on Healthy Aging at the University of Michigan published earlier this year,

”Research shows that chronic loneliness can impact older adults’ memory, physical well-being, mental health, and life expectancy. In fact, some research suggests that chronic loneliness may shorten life expectancy even more than being overweight or sedentary, and just as much as smoking.”

Other reports have found that one-third of American elders are lonely. More women say they are lonely than men and living alone has a high correlation with loneliness.

The people who hand out advice online tell us that loneliness can be relieved by what has become a fairly standard list of prescriptions that includes volunteering, joining a tai chi class or a choir, practicing gratitude or adopting a pet. One list of this type includes buying an Amazon Echo to talk with.

Uh-huh.

Undoubtedly, much younger people are the ones making these lists. They don't often take into account such things as physical limitations or transportation difficulties, for example. Further, all the studies I've looked at assume that any person who says he or she is lonely, even those who choose the “sometimes” answer, are miserable about it.

News flash: I feel lonely sometimes. I have felt lonely sometimes throughout my life. Usually I can move on after a good night's sleep.

What has become clear in my case over the years is that I need a lot more time alone than many people I have known. No one who studies loneliness seems to have considered the fact that some of us enjoy our own company a great deal of the time.

None of that is to say that loneliness is not painful, hard to live with and often associated with depression. And old people have the added difficulty that if you live long enough, a lot of the people who mean the most to you, who you may have known for decades, die.

Sometimes I wonder if one of the reasons I enjoy keeping in touch with my former husband is that he is the last human on earth who knew me when was 17. There is comfort in that.

For a story about elder loneliness last March, Time magazine interviewed Dr. Carla Perissinotto, associate chief of clinical programs in geriatrics at the University of California San Francisco:

“She says loneliness refers to 'the discrepancy between actual and desired relationships' — so it’s possible that someone who lives alone doesn’t meet that definition, while someone in a house full of busy people does. 'It gets to the quality of the relationship,; she says.

“Perissinotto says it’s important to address each person’s underlying cause of loneliness, whether it’s the death of a spouse, medical problems that make it difficult to socialize or leave the home or unmet social expectations.

“Doing so takes 'understanding and being honest with yourself about whether you could be experiencing loneliness,; Perissinotto says.”

There is at least one place in the world that has done more about elder loneliness than any of those lists could. I was alerted to it by TGB reader John Gear.

This short video explains clearly what has been happening in Frome, England, after a doctor there created a system in which loneliness is treated as a medical condition. Take a look:

I'm not sure that the same approach would work everywhere but a good start would be to make loneliness an integral part of healthcare, something physicians, nurses and other healthcare professionals ask patients about. Of course, the hard part comes next - finding ways to help. I suspect what works in a small town would be difficult in larger cities.

What do you think?

EDITORIAL NOTE: This is so far from comprehensive as to be a joke but I hope it will give you an overview of the basics of Medicare and how they apply in the annual enrollment period.

Because this post is longer than usual, I've used bolding and lists to make it easier to navigate and get to the sections that interest you most.

It's that time again – Medicare Annual Open Enrollment begins tomorrow, 15 October, and lasts through 7 December. During this period of 54 days you can:

⏺ Switch from traditional Medicare to Medicare Advantage (MA)

⏺ Switch from Medicare Advantage to original Medicare

⏺ Select a different Medicare Advantage plan if you have one now

⏺ Enroll in a Part D prescription drug plan

⏺ Change to a different Part D plan if you already have one

If you are new or newish to Medicare, it can be daunting. Medicare is a massive program and I'm pretty sure that even people who are certified to help the rest of us figure it out don't know all of it.

In that regard, there is a short list of links at the bottom of this post for more detailed or personalized information.

Here are the various Medicare parts:

Part A: Part of traditional Medicare, it covers hospital and hospice care along with some skilled nursing services after a hospital stay. There is no premium for Part A.

Part B: Part of traditional Medicare, it covers doctor visits and certain outpatient services. The Part B premium is deducted from your monthly Social Security payment and will be about $144.30 in 2020, up from $135.50 in 2019. The exact amount has not been announced yet.

Parts A and B constitute traditional Medicare. You may choose any doctors who accept Medicare.

Part C: Medicare Advantage (MA), issued by private insurance companies, is required to include traditional Medicare Parts A and B (at the same premium as traditional Medicare) and often includes Part D along with limited coverage for vision and dental care, for example.

MA takes the place of traditional Medicare. (Some companies charge no premium.) You are restricted to their network doctors.

Part D: Helps pay for prescription drugs. Part D is private coverage for which you pay a separate monthly premium if you have traditional Medicare.

Medigap: Also called Medicare Supplemental, is private coverage that helps pay for what Medicare does not, such as co-payments, co-insurance and deductibles. Restrictions apply as to who can buy Medigap coverage and when.

MEDICARE AND YOU HANDBOOK
The Medicare and You Handbook has many explanations and answers. You can download an electronic copy online. There is a wide choice of editions: PDF, large-print PDF, ebook for your Kindle, iPad, etc. You can also telephone to have a CD audio version, a Braille version or the paper edition mailed to you.

The telephone number is 800.633.4227 or visit the webpage.

This booklet is well organized, clearly written and as easy to use as anything related to Medicare can be.

MY MEDICARE
The official Medicare website is at medicare.gov. Check the dropdown menus at the top of the page for many specific questions.

If you have not signed up for My Medicare which personalizes the Medicare website for you, you can do that on this page. It can help a lot.

When I signed in to My Medicare to check my Part D coverage a couple of days ago, all my current prescriptions were already listed for me – names, dosages, quantities for each refill, and frequency of refills. All of it was correct.

If any of my prescriptions had changed, this is were I could edit them or add and subtract drugs as needed.

In my state, there are 28 Part D plans available, most with a deductible. With just a mouse click, I could see details of each plan and select up to three-at-a-time to compare with one another and check that my drugs are still covered.

That's important. It can change from year to year and, of course, each company's formulary is unique to it.

A recent mailing from that plan advised me that if I wish to continue for 2020, I don't need to do anything. My plan will roll over to next year.

You can also check drug prices of plans at several pharmacies near you and at mail-order pharmacies.

It took me about two hours to work through all the information and make my choice. I use seven prescription drugs. If you have more, it will take longer but the interface makes it relatively easy with one caveat: the plan finder is newly updated and may contain some glitches.

The above applies only to Part D in connection with traditional Medicare. If you have Medicare Advantage or are switching to it, you're on your own. MA is a mystery to me but Medicare's MA Plan Finder works similarly to the Part D Plan Finder.

PERSONAL SUGGESTION NO. 1: If you do not use any prescription drugs, choose the least expensive plan. Since there is no way to predict what might go wrong and therefore what drugs you would need, nothing else makes sense.

When I was diagnosed with cancer and began using prescription drugs, there was one not covered by my plan. Fortunately, it was not too expensive but in the next enrollment period, I chose a Part D plan that covered all my drugs.

(Yes, it is a stupid idea to make people choose a plan when they don't know what they will need it for. Complain to your representatives in Congress.)

PERSONAL SUGGESTION NO. 2: I was prescribed a new inhaler this year. When I was told my part of the price, I nearly passed out – about $500 per month. I told the pharmacist that was out of the question and prepared to see what else the doctor could recommend.

But the pharmacist told me that drug companies will reduce the price considerably in many circumstances, that I would need a declaration signed by my physician and that they, the pharmacy, would take care of all the paperwork.

In less than a week, the drug company approved me and the price dropped to just over $100. So if the price is high, ask what can be done. Pharmacists are well informed and helpful.

WHAT'S NEW IN MEDICARE FOR 2020
Medicare Advantage may now cover such items grab bars, rides to and from medical appointments, acupuncture, massage therapy and more. They are offered at the plan's discretion and only for certain health conditions. This applies only to Medicare Advantage and not to traditional Medicare.

At last, the Medicare Part D doughnut hole (coverage gap) goes away completely in 2020. However, the new limit for out-of-pocket expenses increases from $5100 in 2019 to $6,350 in 2020. Part D plan members will now pay 25 percent of the cost of generic and brand name drugs.

Once you have reached that $6,350 threshold, you pay five percent of a drug's cost.

WHERE TO FIND PERSONALIZED MEDICARE HELP
You can get personalized help as you ponder your open enrollment decisions.

MEDICARE
Medicare.gov has an online chat feature available during open enrollment, and the Medicare hotline, 800-MEDICARE (800-633-4227), is open 24 hours a day, seven days a week during the annual enrollment period.

SHIP (State Healthcare Insurance Assistance Program)
These state-based organizations offer help with Medicare questions, including your benefits, coverage, premiums, deductibles, and coinsurance along with help for joining or leaving a Medicare Advantage Plan, any other Medicare health plan, or Medicare Prescription Drug Plan (Part D).

Locate a SHIP representative in your state here.

Another SHIP list by state from Seniors Resource Guide. This list is up to date as of October 2019.

Right now, you who have been reading TGB for awhile, are likely groaning: Is she really going to go through the falls prevention thing again? Really?

Well, yes. Twice a year I post a reminder and time-proven advice to help us all avoid falling. I do it because it can save our lives.

Today is the first day of fall, the day the U.S. National Council on Aging chose for its annual reminders about preventing falls. This year there is some updated research that is not encouraging:

Mortality From Falls Among US Adults Aged 75 Years or Older, 2000-2016 is a study published in June 2019 in the medical journal JAMA.

The researchers discovered that the number of deaths from falls among people 75 and older more than doubled between 2000 and 2016. As The New York Times noted in its report of the study:

”In 2016, the rate of death from falls for people 75 and older was 111 per 100,000 people, they found. In 2000, that rate was 52 per 100,000 people.”

That's a huge jump in fatal falls. The study states that the researchers do not understand the increase.

Earlier statistics from the U.S. Centers for Disease Control and Prevention state them differently:

Every 11 seconds, an older adult is treated in the emergency room for a fall

Every 19 minutes, an older adult dies from a fall

Falls result in more than 2.8 million injuries treated in emergency departments annually, including over 800,000 hospitalizations and more than 27,000 deaths

Obviously, those numbers will increase if the new statistics from JAMA are applied.

So what can you do to help keep yourself safe from falls. Here is a short, well-done video I've posted before – from the U.S. National Council on Aging:

This year I've discovered an excellent website about fall prevention that I had not seen before: Health in Aging.org. It is extraordinarily clear, concise and useful. Here are links to the main sections:

Basic Facts

Causes

Diagnosis and Tests

Care and Treatment

Lifestyle and Management

Unique to Older Adults

That is not the only good site on this subject - there is an abundance of information online about falls prevention. We should make good use of it because unlike cancer, dementia, COPD, heart disease and other conditions that affect so many elders, we can each have a direct effect on preventing falls.

On the day after my 12-hour Whipple surgery in June 2017, as I lay barely conscious in a hospital bed, a doctor put something in the middle of my back that I later learned delivered fentanyl to my body to control post-surgical pain.

It stayed there for three days and because of that, I know exactly how people become addicted. When the doctors busted me down to Tylenol along with some other over-the-counter pain killer, I yearned for, lusted after fentanyl.

The OTC drugs cut the pain to a tolerable level but oh my god, did I miss the feel-good part of fentanyl. I wanted to keep feeling that way. Forever.

Now, the United States is caught up in “the opioid crisis” and I am not here to doubt it. People are dying from opioid overdoses by the tens of thousands a year. According to the U.S. National Institute on Drug Abuse (NIDA) (emphasis is mine),

”More than 70,200 Americans died from drug overdoses in 2017, including illicit drugs and prescription opioids - a 2-fold increase in a decade...

“Drug overdose deaths involving prescription opioids rose from 3,442 in 1999 to 17,029 in 2017.”

When counting all opioid deaths, young people die in much larger numbers than old people. But two age groups in one category - prescription opioids - are just about even according to the U.S. Centers for Disease Control (CDC). They report that in 2017, deaths numbered 1,100 for people 24 and younger, and 1,055 for people 65 and older.

In an effort to combat these terrible numbers, the medical community, reports the Washington Post, is conducting

”...a sweeping change in chronic pain management — the tapering of millions of patients who have been relying, in many case for years, on high doses of opioids.

“With close to 70,000 people in the U.S. dying every year from drug overdoses, and prescription opioids blamed for helping ignite this national catastrophe, the medical community has grown wary about the use of these painkillers.”

I have personally seen the difference in prescriptions related to my cancer. When I left the hospital after that surgery in 2017, I was handed a bottle of oxycodone (or oxycontin – I don't recall which) to take home with me for pain control.

As it turned out, I didn't need it and I later recycled the pills at a drug take-back day in my community.

In the past few months, I have had trouble with severe joint and body pains and opioids were never mentioned. It was suggested, instead, that I take certain over-the-counter pain pills three times a day.

When normal dosages were ineffective, the doctor didn't offer a prescription pain killer. He told me to double up on what I was taking. That worked fairly well, but nothing like fentanyl. When the pains subsided a good deal after a couple of months, I cut back to the normal dosage which I need now only once a day most of the time.

But I wonder if I might have been able to skip the weeks of all-day, all-night pain with an opioid. Here's a short video from the Washington Post story about one man's pain predicament:

This is happening to elders and others with chronic pain all over the U.S. The Washington Post explains further:

”Hank Skinner has been tapered gradually over the course of the year. The situation is worse for people forced to cut back their medication too quickly.

“Even medical experts who advocate a major reduction in the use of opioids for chronic pain have warned that rapid, involuntary tapering could harm patients who are dependent on these drugs.

“There is little doubt among medical experts that opioids have been prescribed at unsound and dangerous levels, particularly in their misuse for chronic pain. But at this point there’s no easy way to dial those dosages back.

“Long-term use of opioids creates dependency. Tapering can cause extreme pain from drug withdrawal, regardless of the underlying ailment.”

So the medical system's cutback on opioid prescriptions appears to be a case of throwing out the elders with the bath water.

Let's be clear about this: very few elders are taking fentanyl or other opioids recreationally. Old people did not cause the opioid crisis.

Lots of old people have lots of pain. Cutting their opioid drugs or recommending over-the-counter drugs instead, is causing them harm, they are suffering as one TGB reader, Elizabeth Rogers has been telling us here for quite awhile and she's angry about it. From last Saturday's comments:

”...ongoing physical pain is a significant challenge,” she writes. “Thanks mostly to 20-somethings who overdosed on illicit opioids used recreationally, our omniscient government cracked down--on chronic pain patients, many of whom are 60+, and their physicians.

“DEA raids on doctors' offices haven't done much to reduce overdoses among 20-somethings from heroin and fentanyl, but they have without question had an impact on patients who have used prescribed pain medications responsibly for years.”

Last year, WebMD reported on a study of opioid use from the Agency for Healthcare Research and Quality (AHRQ):

”...millions of older Americans are now filling prescriptions for many different opioid medications at the same time, while hundreds of thousands are winding up in the hospital with opioid-related complications...

“AHRQ's second report found that nearly 20 percent of seniors filled at least one opioid prescription between 2015 and 2016, equal to about 10 million seniors. And more than 7 percent - or about 4 million seniors - filled prescriptions for four or more opioids, which was characterized as 'frequent' use.”

I'm no physician but yes, I would guess that that number of opioid prescriptions at once is a bit over the top.

My point, if I've be too verbose for it to come through, is that it is wrong, as always, to lump all people together. It is younger people who most often abuse drugs (and we as a country need to be helping them). But old people should not be caused to suffer pain when there is a remedy; their lives are harmed by being denied them.

The secondary issue is that I have no idea what to suggest on how to correct this. I have no suggestions and no advice for Elizabeth Rogers or anyone else to restore needed drugs for elders who suffer with chronic pain.

Part 1 is here

One of the hardest parts of life since I was diagnosed with pancreatic cancer two-and-a-quarter years ago and now, COPD, is just how long it takes to do ordinary things that were so easy as to go almost unnoticed during the decades of my pre-cancer life.

Add to that the new medical chores – buying, counting out, tracking prescription drugs and refills; doctor appointments and travel time; forms to fill out prior to every appointment; tests; and so on.

Now I have a new responsibility: I've been prescribed oxygen and last week the technician came to drop off the paraphernalia and teach me how to use it.

If, like me, you have been extraordinarily healthy throughout your life, even being tethered to an oxygen concentrator feels like a burden – except that I need it. I'm still training myself to always watch so I don't trip over the tubing in the two places where I can't hide it out of the way.

It is not clear to me yet how useful the small, portable tanks are. They weigh so much that I can't imagine walking more than a few feet with one hanging from my shoulder but I suppose I'll need to figure that out, (she sighed).

As I explained in Part 1 of this two-part series, everything is hard for the first two hours of my day while I wait for body and joint pains to dissipate. I usually can manage making breakfast and, most of the time, washing up the dishes afterwards although the latter depends on how much my hands and arms hurt.

Also, I can get a lot of news reading, email and research/writing work done for the blog as long as I remember to stand up and walk around for a couple of minutes now and then to keep my knees from getting stiff.

I've switched my main meal of the day to lunch when I still have the energy to prepare something more elaborate than I do in the evening. Sometimes in midday, I cook a couple of meals ahead for future dinners.

Timing is more important in my life now. I choose the time when my breathing seems best to take out trash or pick up the mail. This is mostly during the late morning or early afternoon. Maybe when I figure out the mobile oxygen tanks I'll be more flexible. But I will be hiring a cleaning service within the next week or so – the vacuum cleaner is just one new difficulty for me nowadays.

I also need to get grocery shopping done in the same period of time. I had no idea before now that pushing a supermarket basket – even the small size – could leave anyone short of breath.

For most of my adult life, certainly many years before cancer and COPD, I ran out of mental steam by mid-afternoon. In fact, in a planning meeting back then, my boss once said to my colleagues, “If you need Ronni's help on any of this be sure to ask her before 2:30PM or 3PM; she's useless after then.”

She wasn't wrong and now it's physical fatigue too. I'm pretty much done for the day by 3PM, and after three or four more hours of low-impact, low intellectual puttering and then dinner, I'm in bed with a book or a movie. Even when I sometimes take a nap for an hour, my day is over by 7PM and an hour earlier is not unheard of.

If you've been counting on your fingers while reading the above, you've probably figured out that after accounting for pain, medical chores and the normal, daily tasks of life, I don't have a lot of free time left over.

Nobody tells you that if you get a serious disease in old age, you will be busier than you've ever been – or, at least, it will feel that way because you are so much slower.

Until about a year ago, a friend sometimes asked me to slow down when we were going somewhere together – I hadn't shed my New York City speed-walk. Nowadays I need to ask her to slow down, and I have even greater sympathy for the old woman in this video than when I first encountered her on the web about 10 years ago.

I don't mean JUST cancer patients. I am also including people in general who live with a deadly disease and some elders who may not have a scary diagnosis but whose bodies are letting them down in old age.

And oh, how bodies can do that.

These thoughts came to mind Monday when a couple of reader comments about Supreme Court Justice Ruth Bader Ginsburg's cancer caught my attention. From Darlene Costner:

”Logically she must have suffered terribly during her struggle with cancer (not to mention broken bones). In spite of it, she just keeps going on like the energizer bunny.”

Reader Carol Leskin (who contributes to the Tuesday Reader Story feature of this blog), left this note on Facebook:

”I have often wondered what it is that keeps you moving forward. On days when I struggle and just want to give up, I think of you. It helps me and I say, 'what the hell' to myself and get on with the day as best I can. I am glad you look to RGB for inspiration...”

I know exactly what Carol Leskin is talking about. But even though I resolved early on to write as clearly and honestly as possible about my cancer predicament and, now, COPD, I've shied away from the day-to-day difficulties which in shorthand are this: it's hard. It's really hard sometimes.

Mostly, old people don't talk about these things – the difficulty of just getting through a day. Part of that is succumbing to long-term, societal prohibitions against old folks' “organ recitals.” We're not supposed to mention our health troubles because younger people don't want to know.

Another part for me is to avoid sounding whiny but both of those reasons are stupid. It's what is happening to us and if it comes as a surprise, it's because nobody talks about it.

So let me take a stab at what an average day has become. It can apply – often unexpectedly and with differing particulars - to pretty much anyone in the age group we are concerned with here.

That said, let me tell you about my mornings.

When I wake at about 5:30AM each day, I feel terrific. The bed is warm and cozy and my comfort level is near 100 percent, not a twinge of pain and I cannot imagine that I hurt anywhere.

Then I try to throw back the covers and realize that no, the body and muscle pains have not gone away since yesterday. How is it that an arm, a hand and fingers can hurt that much, I ask myself.

I wince as I turn on the light, fingers screaming to me, “don't do that”. I do it anyway and then I try to stand. Depending on how much my left or right (never both at once) ankle hurts, I slowly crab walk to the bathroom for morning ablutions (isn't that a fine word?).

Or, on a good day, I can walk almost normally.

I do a mental check of what else hurts. For the past month it has been some combination of fingers, ankles, an elbow and/or knee and back of my neck. Have you tried brushing your teeth when you can't close your hand around the toothbrush handle? Hint: Holding your hands under hot water helps loosen them up.

In the kitchen while the coffee is brewing, I grab some ibuprofen for the pains and sit down to wrangle the newest inhaler into submission.

I've been using the new one only since Tuesday but it seems to be improving my breathing.

Sometimes I think the coffee might be what does the most good but either way, it will be two hours before the pain killer fully kicks in. I use that time to meditate, read the news online with TV news droning in the background, answer overnight email, plan the day or the next blog post or whatever else is on my mind that doesn't involve physical exertion. Like walking. Or showering. Or dressing.

It is astonishing how precise the timing is. Within 15 minutes one side or the other of two hours, I am close to pain-free. So – breakfast, shower and dress which seem to take forever compared to pre-cancer life.

And then, about 9AM my day begins. Before cancer and COPD, I could shower, dress, have breakfast and be out the door by 6:30AM.

Here's a little secret: if I don't need to shop or see a doctor or meet a friend or some other outside activity, I've been known to skip showering and sometimes I stay in my jammies all day because it's not unheard of around here to lose my breath just dressing or undressing.

Part 2 is here

On Monday's discussion here about end-of-life choices, the cost of the drugs used for physician-assisted dying - $3,000 to $4,000 in Oregon – was mentioned. (Thank you all who posted ideas about assistance with the price.)

Soon after that story was posted Monday morning, two related stories popped up while I was reading the news of the day.

The first is short and terribly sad. As the Washington Post reported, Brian S. Jones, shot his wife, Patricia A. Whitney-Jones, age 76, in the head then shot himself three times.

”[The] Washington state couple whom authorities believe died by murder-suicide reportedly left several notes expressing worry that they could not afford treatment for the wife’s severe medical issues.

“The husband, 77, called 911 shortly before 8:30 a.m. Wednesday and told the dispatcher that he planned to shoot himself, the Whatcom County Sheriff’s Office said in a statement. The man said he had written a note for the sheriff with information and instructions.

“The dispatcher tried to keep the caller on the phone, according to authorities, but the man said, “We will be in the front bedroom” and hung up.”

Did you notice that first sentence in the quotation, “...worry that they could not afford treatment for the wife's severe medical issues.” We'll get back to that in a moment.

The second story has a happier ending but still leaves one wondering.

According to Kaiser Health News, on a Saturday morning in July this year, 56-year-old Donna Ferguson from Ecru, Mississippi, met Dr. Thomas Parisi, an orthopedist from Madison, Wisconsin, at Galenia Hospital in Cancun, Mexico, where he performed a total knee replacement on one of Ferguson's knees.

A few hours later, while Ms. Ferguson was already working with a physical therapist, Dr. Parisi flew home to Wisconsin. Ferguson stayed another 10 days at a nearby Sheraton hotel for physical therapy at the hospital twice a day.

”Parisi, who spent less than 24 hours in Cancun, was paid $2,700, or three times what he would get from Medicare, the largest single payer of hospital costs in the United States. Private health plans and hospitals often negotiate payment schedules using the Medicare reimbursement rate as a floor...

“In the United States, knee replacement surgery costs an average of about $30,000 — sometimes double or triple that — but at Galenia, it is only $12,000, said Dr. Gabriela Flores Teón, medical director of the facility.

“The standard charge for a night in the hospital is $300 at Galenia, Flores said, compared with $2,000 on average at hospitals in the United States.

“The other big savings is the cost of the medical device — made by a subsidiary of the New Jersey-based Johnson & Johnson — used in Ferguson’s knee replacement surgery.

“The very same implant she would have received at home costs $3,500 at Galenia, compared with nearly $8,000 in the United States, Flores said.”

Ferguson's Mexico surgery was set up by a new-ish organization, North American Specialty Hospital (NASH), based in Denver.

”[NASH] has organized treatment for a couple of dozen American patients at Galenia Hospital since 2017.

“Parisi, a graduate of the Mayo Clinic, is one of about 40 orthopedic surgeons in the United States who have signed up with NASH to travel to Cancun on their days off to treat American patients.”

Two big things jump out at me about these two stories, especially as 20-odd presidential candidates in the U.S. are arguing over their individual flavors of “Medical for all”:

What is wrong with a country that sends its patients AND its physicians to another country for treatment at a reasonable price?

And

What is wrong with a country in which an aged couple sets up a murder/suicide pact because they cannot afford medical treatment?

Both of these questions fall into the same category as Monday's question about the high price of the drugs in Oregon's physician-assisted death program.

Any of us could find ourselves in these predicaments. Something is very wrong.

Medicare does a decent job of making their statements of what Medicare paid, what the a patient's supplemental coverage paid and what the patient him/herself may be billed. But that's mostly for people who are 65 and older.

I know that a lot of TGB readers haven't yet reached Medicare age and that non-Medicare medical bills can be nearly impossible to decipher. Now there is some help.

It's called Your Go-To Guide to Decode Medical Bills, a project of NPR and Kaiser Health News to create the “Bill of the Month”. It is

”...a crowdsourced investigative series in which we dissect and explain medical bills you send us. We have received nearly 2,000 submissions of outrageous and confusing medical bills from across the country.

“Each month we select one bill to thoroughly investigate, often resulting in the bill being resolved soon after the story is published.”

The fact that KHN/NPR can't possibly explain all the bills they receive led to this helpful series – a user-friendly toolkit, as they put it – to help patients understand “some of the ins and outs of medical billing.”

The first section of the most recent “Bill of the Month” contains checklists for what to do before seeking medical care; how to use an itemized bill; common mistakes that might be on your bill; and more.

There is also a glossary section with definitions of old familiars like copay. Some of them I'd never heard of such as Chargemaster, and apparently there is a difference between outpatient services and outpatient clinic. All explained in non-medical terms so people like me can understand.

You can find this latest in the free series at Kaiser Health News.

MEDICARE PART D
On Wednesday, Reuters reported that President Trump is considering an executive order

”...that would cut prices on virtually all branded prescription drugs sold to Medicare and other government programs, according to two industry sources who had discussions with the White House.

”The White House declined to comment,” reports Reuters, “and it was unclear how far along the any such plan was from being undertaken. The U.S. Department of Health and Human Services, also declined to comment.

“Americans pay the highest prices for prescription drugs in the world as most other developed nations have single-payer systems in which the government negotiates drug prices for its people.”

Since we have learned that the president changes his mind from hour to hour and even, sometimes denies having said things we all saw him say on the video tape, there is no way to tell how real this is. You can read more at Reuters.

EDITORIAL NOTE: A couple of weeks ago, Andrew Soergel, who is is studying aging and workforce issues as part of a 10-month fellowship at The Associated Press-NORC Center for Public Affairs Research, interviewed me about retirement and a whole bunch of other topics. We had a lively time together, the story has now been published and you can read it here.

"Andy tells me that when he's got some time, he pull together some of the other things we talked about for another story. I'll let you know when that is published.

Last week, my oncologist told me that I look much better, much healthier than when he canceled my chemotherapy two months ago. I was surprised; I hadn't realized I didn't look well.

He also said that I had hardly laughed at all when we met that day. Laughed? I asked. He said I'm big laugher - about my cancer, about all kinds of things - and he particularly appreciates my sarcasm.

He went on to tell me that he believes there is a connection medical science doesn't yet know much about or understand between good humor and health.

There has been some research about this possible connection which Washington Post reporter Marlene Cimons summarizes:

”Laughter stimulates the body’s organs by increasing oxygen intake to the heart, lungs and muscles, and stimulates the brain to release more endorphins, according to the Mayo Clinic,” [she writes].

“It also helps people handle stress by easing tension, relaxing the muscles and lowering blood pressure. It relieves pain, and improves mood. Laughter also strengthens the immune system.

“'When we laugh, it decreases the level of the evil stress hormone cortisol,' [professor of medical oncology at the Mayo Clinic College of Medicine and Science, Edward] Creagan says.

“'When we are stressed, it goes high and this interferes with the parts of the brain that regulate emotions. When that happens, the immune system deteriorates and becomes washed in a sea of inflammation, which is a factor in heart disease, cancer and dementia. Cortisol interferes with the body’s immune system, putting us at risk for these three groups of diseases.'

“For sick people,” writes Cimone, “laughter can distract from pain and provide them with a sense of control when they otherwise might feel powerless, experts say. Moreover, it’s often the patients themselves who crack the jokes.

“'Some of the funniest patients I have ever met were those dying of cancer or struggling with alcoholism,'” Creagan says.”

Sven Svebakis, professor emeritus at the Norwegian University of Science and Technology, has studied the health impact of humor for more than 50 years. Referencing a large study of more than 53,000 participants he and colleagues conducted, Svebakis told WaPo's Cimons,

”Humor also seems to stimulate memories and improve mental acuity in the elderly, especially among those with dementia.

“The therapeutic benefits of 'clown therapy' for hospitalized pediatric patients is well-established, but elder clowns are now also helping seniors in residential settings, says Bernie Warren, professor emeritus in dramatic arts at the University of Windsor and founder of Fools for Health, a Canadian clown-doctor program...

“He has seen Alzheimer’s patients engage with clowns 'and become lucid and aware', Warren says. 'There’s anecdotal evidence that suggests clowns help greatly with memory, language and communication and awareness of self in the present.'”

Personally, I find clowns to be more creepy than funny but if it helps others, that's a good thing.

All of this makes sense to me and even if it eventually proves not to help much, laughing always feels good. So I'll just go on making (mostly) mordant jokes about my predicament and be happy to have some of my doctors laughing along with me – while sometimes making the jokes themselves:

When I saw my primary care physician for the first time soon after I was diagnosed with pancreatic cancer two years ago, he flipped through a printout of my recent test results and said:

“You're very healthy, Ronni, except for the cancer.”

That was my first cancer joke and I've been finding a lot more to laugh at about cancer ever since.

In the days following those two cancer-related anniversaries in June that you helped me celebrate, I've been wondering what, if anything, I've learned from these two years since I was diagnosed.

Until then, ageing was the major game-changer but nothing dramatic: thinning hair, reduced energy, weight gain, insomnia, etc. In the greater scheme of things, more annoying than serious.

It had been that way all my life. Aside from some of the childhood diseases of my era and the occasional flu in adulthood, I had no health problems.

That changed dramatically in June 2017, when the doctors told me I have pancreatic cancer. Those earliest few months following Whipple surgery were, as I have often said, the worst thing that ever happened to me. It was months until I was right again.

Since then, I've been through two or three rounds of chemotherapy with the usual irritating side effects, a couple of “small” surgeries to fix a bleed in my chest, the ever-present collection of pills to take at different times of day and the regularly occurring aches and pains that have no explanation.

Have I learned anything from all this? I had to think long and hard about that.

Looking back now, I see that the difficulty in my recall is that new ways of understanding or of doing things or behaving differently (particularly in late life when you think you've already figured out a lot of the big stuff) don't arrive full-blown, ready-to-use.

Like new ideas in general, they come in increments, bits and pieces that slowly meld together into something useful to know. Here are three of mine. These are not new ideas, but now they present in a new context that I have no practice at until now. See what you think.

DON'T FOCUS ALL YOUR ATTENTION ON WHAT'S WRONG WITH YOUR BODY. Do what is necessary to take good care of yourself, use your body as much or as little as you are capable of and then get on with everything else.

USE THE TOOLS NECESSARY TO HELP YOU FUNCTION with the kind of attitude people bring to eye glasses – they are just an aid to your well being. I knew a woman who refused to use her walker when she was away from home because, she said, she didn't want to appear old to other people.

Here's the news about that: she looked old to the world with or without her walker and the only thing she accomplished leaving it at home was missing out on things she might have enjoyed doing. Not to mention the possibility of suffering a fall.

These days, I can't carry all the groceries into the house in one go as I did not long ago so I am currently haunting Amazon to find just the right wheeled cart to help me do that. In times to come, I will add whatever aids are necessary to live as full a life as possible.

So use a cane, a walker, wear hearing aids or oxygen, etc. as you need them. What other people think about you is none of your business.

THIS IS THE GOLDEN ONE, the one that makes all the difference in navigating old age in general or with whatever conditions, ailments or diseases you find yourself stuck with.

Although I now use a medication that improves the effects of COPD, I'll never be able to walk up more than a few stairs again. I'll never be able to do the daily exercise routine I had done five mornings a week for many years. And I can't carry anything that weighs more than about five pounds without losing my breath.

But what about all the other things I can still do? I have a friend who always said he was saving learning pastry cooking (he was a professional chef) and trying to understand Wagner's music for his late years.

I didn't make plans for what to do in my old age as my friend did but major theme of my life has been books. I have loved them beyond measure – from before I have memories or so it feels. Maybe I was born with one in my hand (as opposed to newborns today who enter the world clutching tiny, baby-sized smartphones).

I have stacks of books around here - new ones along with plenty of old ones that I would like to re-read before I die.

There are wonderful movies and great TV shows to re-watch too. A couple of months ago, I spent four or five weeks, binge-watching The West Wing, seeing it for the first time since its original broadcast 20 years ago.

I had such a good time reveling in the superb writing along with the stunningly good interpretation of those words by the actors and directors. It is brilliant and although there are other good TV shows, I can think of nothing that surpasses this one.

Now that I think about it, maybe I'll watch the whole series yet again. Excellence in anything is one of the world's great pleasures.

Then there are movies I like to watch again and again starting with The Third Man that I must have watched 20 times; I can do the dialogue by heart. And, well – never mind; we each have our lists.

My point is this: we all have interests that we have neglected during the busy mid-years of life that give us pleasure and certainly some of them can be adapted to our old-age infirmities if necessary.

Heraclitus was right, you know: “The only constant is change.” Here in the realm of old age where most of us at this blog live, one of the biggest changes is how our bodies betray us – and they do it in an astounding variety and number of ways.

We can be miserable lamenting our lost capabilities, or we can acknowledge them, wave them goodbye and find ways to get on with new ways of living. I know I sound like Pollyanna but she too, like Heraclitus, was right. Sometimes.

It is another great pleasure in life to live it in the best way possible given the circumstances bestowed upon us. For as long as we are conscious there is a life to be lived. It is enormously gratifying to do that despite (or, maybe, because of) the impairments that require us to adapt.

Let us know in the comments how you deal with the not-so-wonderful changes that come with old age.

While I was celebrating the second anniversary of my Whipple surgery last week, I was handed an additional diagnosis: COPD (chronic obstructive pulmonary disease) stage 4, the most severe.

I first noticed a shortness of breath last January and it has worsened since then. I had to wait a long time to see a pulmonologist and got in last week only because the doctor had a cancellation.

Because symptoms sometimes mimic old age, COPD often goes undiagnosed until it has advanced to later stages. With diligent application of certain medications and treatments, quality of life can be maintained and extended but I doubt a marathon – or even a hop, skip and jump - is in my future.

COPD is not curable but medications can stop its progression.

One of my other physicians had prescribed an inhaler that helped ease my breathing – sort of. The pulmonologist gave me a different inhaler and as I write this on Sunday, having used it morning and evening since Thursday, I'm already functioning much better.

I can now change clothes without stopping to catch my breath. Ditto walking to the car and if I take it slowly, I can even do small inclines without losing my breath. Not bad for three days of a medication, and I'm told the effect is cumulative. Hurray.

There will be some more tests and if indicated, there may be additional or different medications. My mind seems to have cleared of some fuzziness I'd had so I'm thinking better. Well, I think so, anyway.

As part of a longer message on Friday's post, Melinda left this:

”Ronni celebrate!! You are still here when some of the experts gave you a time frame. Life is random and the universe does with us as it pleases...I say it again: it is all random and when they turn the page on The Big Book and your name is on it, that will be goodbye.”

Although I tend to say it less elegantly (“shit happens”), Melinda and I are singing the same song in this regard. If there is a mind behind the universe, he or she is keeping reasons from the rest of us. We can have no effect on when our page is turned.

At least I will have some notice – when doctors determine I have fewer than six months to live, I can begin the procedure for physician-assisted death.

So, as Melinda advises, in my quiet way I am celebrating. Having two major diseases is hardly ideal but I'm upright when I want to be and if it doesn't involve speed, I can do most of what I need to do.

[IMPORTANT NOTE: Please do not ask the name of the inhaler I am using. I never reveal prescription drug information. Also, do not recommend or name any treatment for COPD including stories of people who cured it by eating three raw onions (or something else weird) a day. Treatment is properly left in the realm of trained physicians and not a general-interest blog.]

A growing number of elders in the United States, including me, are using cannabis to treat their old age ailments.

For more than a decade, I couldn't sleep longer than three or four hours a night. After I woke, I'd lie in bed for a few hours, but I never fell into a real sleep again that night.

Once a week or so, survival (I'm guessing) kicked in and I'd manage a marathon sleep of six or seven hours before reverting to three or four hours.

When, two years ago, I had recovered enough from the pancreatic cancer surgery that my “normal” sleep pattern returned, I was concerned that without more sleep, my health would suffer while I try to live with this cancer predicament.

Over-the-counter potions have never worked for me and I didn't want prescription opioids. In the hospital, I had been given fentanyl for three days following my 12-hour cancer surgery and I learned then how insidiously wonderful it is. I understand completely how people get hooked.

Fortunately, I live in a state, Oregon, where both medical and recreational cannabis is legal. Dispensaries are scattered around the Portland area at about the same ratio as pharmacies and are easy to find. They are run by friendly, knowledgeable people.

While I was shopping for cannabis recently, a “budmaster” told me that most of the dispensary's customers are old people and the available research seems to bear that out.

Here is a statista.com chart showing registered users of cannabis in Oregon by age as of April of 2019. Of course, “registered” is moot now that recreational use is also legal so this is not an entirely accurate picture of elder cannabis use:

If you add up all the users age 60 and older, just over 35 percent of are using cannabis.

Last fall, NPR reported on a free, regularly scheduled bus that takes elders to a local dispensary. Ninety-year-old Shirley Avedon uses cannabis to treat her carpal tunnel syndrome:

"'It's very painful; sometimes I can't even open my hand,' Avedon says.

“So for the second time in two months, she has climbed aboard a bus that provides seniors at the Laguna Woods Village retirement community in Orange County, Calif., with a free shuttle to a nearby marijuana dispensary.

“The retired manager of an oncology office says she's seeking the same relief she saw cancer patients get from smoking marijuana 25 years ago.

"'At that time (marijuana) wasn't legal, so they used to get it off their children,' she says with a laugh. 'It was fantastic what it did for them.'”

Some physicians are supportive of elders' cannabis use, others not so much mostly, it seems, because there is so little research due to the federal government's designation of it as a Schedule 1 drug. NPR again:

”The limited research that exists suggests that marijuana may be helpful in treating pain and nausea, according to a research overview published last year by the National Academies of Science, Engineering, and Medicine. Less conclusive research points to it helping with sleep problems and anxiety.

“Dr. David Reuben, Archstone professor of medicine and geriatrics at UCLA's David Geffen School of Medicine, says he sees a growing number of patients interested in using it for things like anxiety, chronic pain and depression.

"'I am, in general, fairly supportive of this because these are conditions (for which) there aren't good alternatives,' he says.”

A lot of elders report that their doctors are uninformed about the medical uses of marijuana and they, the patients, feel uncomfortable asking for a card in the states where only medical marijuana is legal.

Earlier this month, MSN.com reported:

”More and more older people are turning to cannabis for their ailments, because it can soothe the symptoms of problems like arthritis, Parkinson's, and chronic pain...

“A new study suggests that the number of people using marijuana is increasing faster for those aged over 65 than for any other age group, but they come up against many barriers when trying to access it.”

I'm fortunate that my doctors are knowledgeable and informative about patients' use of cannabis and we can discuss it openly. We also keep it on my list of medications so that when they are changed, we remember to check how the cannabis might interact with my other drugs.

It amuses me that something my friends and I saw as “cool” and rebellious when we started smoking pot in our teen years is now cool in a whole new way for us oldest folks.

One difference is that the largest number of elders to whom I've chatted with about cannabis tell me, “Oh, but I wouldn't want to get high.”

Really? I think it's fun to get high and listen to music now and then. But if that's not your thing, there are plenty of CBD products that treat a variety of ailments without the psychedelic effect.

I bring all this up because there are now 30 U.S. states that allow medical and/or recreational use of cannabis, and I wonder what your experience with and thoughts are about it – particularly since many of us elders seem to be taking to it with eagerness.

And god knows, it's cheaper than a lot of prescription drugs.

(Feel free to use an alias in the comments if you don't want others to know your name.)

I know, I know, this is one of those nuts-and-bolts blog posts that sounds like a snore. You think you know all you need to know and maybe it's just me but each year at about this time when I check what I wrote in the past, there are a bunch of things I've forgotten.

We are still a week away from the first day of summer and already there is a mini-heat wave going on here in the northwest corner of Oregon. Temperatures were in the 90s F yesterday and are threatening to reach that level today.

Then, according to the weather websites, we will have two weeks or so of mid-80s F degrees. This certainly is not as high as it can and does get here and especially in the southern tier of the United States, but it can still be a danger to old people.

So at about this time each year, I post a reminder about how to keep ourselves cool throughout summer and how to know when overheating is a medical emergency that requires immediate attention. Although everyone suffers, extreme heat is more often deadly for elders than younger people.

For example, in France in August of 2003, during an extreme heat wave, 14,802 heat-related deaths occurred, most of them elders. In the U.S., it is estimated that about 370 deaths a year are attributable to heat, half of them elders. Do not take extreme heat lightly.

HOW TO STAY COOL AND SAFE IN HOT WEATHER
Here are the best suggestions for staying cool and safe during extreme hot weather. Yes, I've published these before – pretty much every year - but it's good to review them again.

Even if, like me, you dislike air conditioning, when temperatures hit 80F, it's time to pump up the volume of that appliance. Fans, say experts, don't protect against heat-related illness when temperatures are above 90 degrees; they just push hot air around.

If you don't have an air conditioner, plan for the hottest part of the day by going to a mall or a movie or the library or visit a friend who has air conditioning.

If you have air conditioning and have elder friends or neighbors who don't, invite them for a visit in the afternoon. Some other important hot weather tips:

• Wear light-colored, loose clothing.

• Drink plenty of liquids and make reminders to yourself to do so. Elders sometimes don't feel thirst (another thing that stops working well with age). One way to know if you are drinking enough water is to check the color of your urine. Light-colored is good; dark indicates dehydration.

• Do not drink caffeinated and alcoholic beverages – or at least keep them to a minimum; they are dehydrating. (Some people dispute this; experts do not.)

• Plan trips out of the house and exercise for the early morning hours.

• Eat light meals that don't need to be cooked. High-water-content foods are good: cantaloupe, watermelon, apples, for example.

• Keep a spray bottle of cold water to help you cool down. Or use a damp, cool towel around your neck.

• Close doors to rooms you are not using to keep cool air from dissipating.

• Some medications for high blood pressure, diabetes and other conditions can inhibit the body's ability to cool itself, so it might be a good idea to ask your physician if you can cut back during hot weather.

• Pull down the shades or close curtains during the hottest times of day.

In that regard, I have been quite successful in keeping my home cool during hot weather without the air conditioner. In the morning, when the temperature here in Portland, Oregon is typically in the mid- or high 50s, I open all the windows.

I keep my eye on the thermometer and when the outside temperature reaches 65F or 70F – usually by late morning - I close the windows and the shades. After several years of practice with this method, I only rarely need the air conditioner even on 90-plus degree days. It saves a lot of money, too, not using the air conditioner. But never, ever hesitate to turn it on when you need it.

SERIOUS HEAT-RELATED CONDITIONS
Heat exhaustion occurs when the body gets too hot. Symptoms are thirst, weakness, dizziness, profuse sweating, cold and clammy skin, normal or slightly elevated body temperature.

Move yourself or someone experiencing this to a cool place, drink cool liquids, take a cool bath or shower and rest.

Heat stroke is a medical emergency. It can cause brain damage so get thee or the affected person to a hospital. It occurs when body temperature reaches 104 or 105 in a matter of minutes. Other symptoms include confusion; faintness; strong, rapid pulse; lack of sweating and bizarre behavior.

Don't fool around with heat stroke.

There now. That's pretty much the best of health experts' recommendations about protecting ourselves and others during extreme hot weather. If you have additional suggestions, please add them in the comments.

What a terrific discussion you made of Wednesday's post from Crabby Old Lady. I mostly keep our distance on this blog from the constant turmoil from Trump – there is more than enough writing about him and his misplaced belief in his own genius.

As Susan began her comment:

”Dear Crabby Lady: Thanks so much for making me feel not so alone in the spikes of “omg, what is it going to take for someone to do something here?????!!!)”

“Making me feel not so alone”. There is nothing quite like talking with and listening to others to help us understand our predicament whether it is a dangerous president or growing old.

Talking with others applies to both our politics and our ageing. As I wrote in these pages a week or so ago,

”...it helps – a lot sometimes - to learn that other people are struggling through the same things you are. It doesn't mean we don't also laugh, read books, go to the movies and whatever else engages us that is still possible. But letting off steam together kind of clears the air.”

On The Alex and Ronni Show that my former husband and I recorded yesterday, we took opposite sides in our discussion of growing old. Alex sees the darker side; I take a lighter view of.

It's mid-afternoon and I'm tired so I will cut this short today.

In response to Wednesday's post about MIT's AGNES suit, I was startled to find this email in my inbox:

”I think people make too much misery out of old age. My eyes are dimming and so are my ears, my steps are slow. My breath is short and my nights long. My husband of 62 years died in Jan.

“Nevertheless I see friends daily, go to weekly workshops, write a newspaper column, just went to NYC with friends and visited family in NJ. I see lots of movies and read the NYTimes and a cascade of books. At 86 I don't expect miracles, but for now I'm having a fine time.”

How lucky that you apparently do not have any major impediments to being as active as you want. That is not true for all old people nor do they bring it on themselves, as you appear to imply. According to the U.S. National Council on Aging,

”...about 80 percent of older adults have at least one chronic disease and 68 percent have at least two. In our survey, nearly one in two seniors reported living with two or more chronic conditions...

”From making it difficult to perform daily tasks such as walking up steps or bathing, to causing significant physical, emotional, and financial strain, these diseases can take an extensive toll, particularly among seniors. What’s more, without proper care, chronic illness can reduce quality of life, and keep seniors from maintaining the level of independence they desire.”

God knows I've said it often enough here over 15 years but one more time seems necessary: we age at entirely different rates. Sometimes a 50-year-old needs full-time care and other times, a 90-year-old is functioning as well as we expect a healthy 50-year-old to do.

My surprise at reading this email wasn't done. Checking the comments on the blog, I saw that about half a dozen dismissed the AGNES suit out of hand:

”I have a strong negative reaction to these types of suits,” wrote James Cotter. “They suggest that ALL older persons experience all of these decrements at one time. They do not reflect the experience of growing older, especially for those who have maintained decent health and mobility.”

Let's stop right there with “...those who have maintained decent health and mobility.” What about the people who haven't? Does anyone here think it is the patient's fault she was diagnosed with MS at age 31? And no, AGNES does not suggest that all old people suffer exactly the same experiences.

”I think these toys have some utility,” wrote Harold, “but they will not provide insight into what it's like to wake up with these limitations permanently installed and likely to become more pronounced and an awareness that this is the best it's ever going to be.”

First, AGNES is not a toy. For well more than a decade, MIT has used the suit to help people design products and services that help elders engage with the world more easily.

As to understanding that limitations are often permanent, we can't ask people to wear the suit for a week or a month or more. But a day will do it quite well in increasing understanding of elders.

Jeanette wrote, ”...what is missing is their learning that there is an interior life - where we can explore as many different worlds as they do - where we can laugh, make love, watch Mick Jagger on a rope bridge - we can read, listen to music and through the magic of technology.”

”...for real understanding of coping with some of the simulated conditions,” wrote Emma J., “I suspect the value may be minimal. The emotional and psychological aspects of coping with chronic pain, limited mobility, vision and hearing deficiencies, dental problems, poverty without realistic hope of eventual relief can be insidious.”

Oh, I'm not so sure about that, Jeanette and Emma J. No one needs any kind of suit to imagine other worlds, to laugh, make love, etc. Young people do those things every day. And I would bet good money that after even an hour or so in the suit, participants begin to see the difficulties you mention, Emma J. We all come to realize that growing old won't always be easy.

No suit can exactly emulate a human being physically, emotionally or any other way. But for many years, AGNES has been educating people who need or want to know what daily life is like for old people. Let's not throw out that baby with the bath water – the AGNES suit is a good tool that has proved its importance and usefulness in hundreds of ways.

As it happens, just a week ago, The New Yorker published a long, online profile of the director of the MIT AgeLab, Joseph Coughlin, written by the estimable Adam Gopnik who tried out the AGNES suit. I will quote his experience with it:

Slowly pulling on the aging suit and then standing up—it looks a bit like one of the spacesuits that the Russian cosmonauts wore—you’re at first conscious merely of a little extra weight, a little loss of feeling, a small encumbrance or two at the extremities.

“Soon, though, it’s actively infuriating. The suit bends you. It slows you. You come to realize what makes it a powerful instrument of emotional empathy: every small task becomes effortful. 'Reach up to the top shelf and pick up that mug,' Coughlin orders, and doing so requires more attention than you expected.

“You reach for the mug instead of just getting it. Your emotional cast, as focused task piles on focused task, becomes one of annoyance; you acquire the same set-mouthed, unhappy, watchful look you see on certain elderly people on the subway.

“The concentration that each act disrupts the flow of life, which you suddenly become aware is the happiness of life, the ceaseless flow of simple action and responses, choices all made simultaneously and mostly without effort. Happiness is absorption, and absorption is the opposite of willful attention.

“The annoyance, after a half hour or so in the suit, tips over into anger: Damn, what’s wrong with the world? (Never: What’s wrong with me?)

“The suit makes us aware not so much of the physical difficulties of old age, which can be manageable, but of the mental state disconcertingly associated with it—the price of age being perpetual aggravation.

“The theme and action and motive of King Lear suddenly become perfectly clear. You become enraged at your youngest daughter’s reticence because you have had to struggle to unroll the map of your kingdom.”

MIT AgeLab has worked with thousands of volunteers of all ages – including old adults even past age 85 - to participate in research and interactive workshops. And the AGNES suit has helped other thousands create new technologies that help people design products, delivery services and policies that improve the lives of elders.

And here's something else that is useful – recounting the “misery of old age.”

When I began this blog 15 years ago, I was appalled by all the negative writing about old people. Whether academic research, news and magazine stories, movies, TV, novels and more, the prevailing attitude was that getting old is the worst thing that can happen to anyone.

I didn't believe that and then made the rookie mistake of ignoring too much of the downsides of ageing. Looking back at those years, I found a lot of overstatement on my part about how good life is after 60 or 70 or 80 and more.

Geez. Of COURSE, our bodies slow down. Some body parts stop working properly. Others give out. Mysterious aches and pains show up. It's what bodies do. The key in old age is to adapt but that's for another day.

What I've changed here at TGB now since I realized my early mistake in being a bit too rosy about the effects of growing old, is make room on a fairly regular basis to complain and moan and groan and bitch about the irritations of life in the old person lane.

I believe this kind of time is valuable particularly now when we in the oldest generation have lived most of our adult lives in an atmosphere where old age could barely be acknowledged let alone discussed.

But it helps - a lot sometimes - to learn that other people are struggling through the same things you are. It doesn't mean we don't also laugh, read books, go to the movies and whatever else engages us that is still possible. But letting off steam together kind of clears the air.

But no one here is “making a misery of old age.”

That headline is not about me nor is it about most of you who are reading this. We're already old and we know quite well what being old is like.

Instead, I'm talking about much younger people, the ones who invent, design and/or market products and services for and to old people. You know, the ones who haven't a clue about what old age is like but who don't let that get in the way of telling old people what's good for them.

Like I once was and was Ceridwen Dovey, a 30-ish novelist and short story writer who tried to create a late-80s-year-old-man (among other elders) from her imagination. As she said later in the New Yorker about her attempt:

”I modeled my characters on the two dominant cultural constructions of old age: the doddering, depressed pensioner and the ageless-in-spirit, quirky oddball.

“After reading the first draft, an editor I respect said to me, 'But what else are they, other than old?'”

This next quotation, longer than the first, is from psychologist Tamara McClintock Greenberg writing in Psychology Today about learning what many elders live with every day.

After being outfitted with earplugs, popcorn kernels for her shoes, gloves to simulate neuropathy and eyeglasses to limit peripheral vision, she tried the “simple” activity of walking no more than a few feet down a hall.

”I thought to myself,” said Dr. Greenberg, “'I can do this.'”

“Then, given a cane, I was asked to walk down the hall. It was maybe 100 feet. I was pretending to be an elder with impaired hearing and vision, bad mobility and numbness in my hands and pain in my feet. I realized that I was not sure that I could actually complete the walk down the hall.

“Suddenly, my class exercise did not feel like a game. I started to panic. From the loss of peripheral vision, I could not see who was standing next to me, and I started to feel suspicious. As I walked, I had a lovely young woman at my side (I was lucky, she is a physical therapist in real life), who could help me if I needed it.

“I did not want help however; I wanted out of my body, which felt trapped, alone, and isolated. Weirdly, even though we were pretending, I felt mad at my companion, who had a body that worked so much better than mine.

“It was at this moment I understood something in a way that I never have before. I thought, I might kill myself if I had to live this way.”

She's not alone in that thought and some elders carry it through to its logical conclusion. Most, however, do not.

As it turns out, those changes that were made to limit Dr. Greenberg's mobility already exist in what the Age Lab at MIT calls its AGNES suit (invented at the Age Lab) that simulates the physical difficulties that come with old age. Here is a short video about what AGNES does:

There is a further explanation on the YouTube page:

”Put on this suit and you feel increased fatigue, reduced flexibility in joints and muscles, spinal compression, and difficulty with vision and balance.

“Altogether, AGNES is more than just a suit. It is a calibrated method developed and constructed by exercise physiologists, engineers, and designers. As demographics shift, we need to fully understand the needs of an aging population to design a future that is accessible and engaging for people of every age.”

The Try Guys are a group of four comedians, actors and filmmakers who, since 2014, have been making videos about – well, anything they are curious about – what it's like to be a mother, changing diapers, making cupcakes, pottery and in today's case, testing the AGNES suit.

Last month, the Age Lab posted several videos about ageing – two of them about the AGNES suit. Here is the first one with the four members of The Try Guys along with the director of the Age Lab, Joseph Coughlin. (Pay attention to him. He knows a lot about what it's like to be old.)

These are long-ish videos. If you are up for more, here is the video of The Try Guys wearing the suits for a full day. The video makes an important point about being old that is rarely mentioned – how hard it is to get through a day of what we called normal activity when we were younger, but no more. It's not easy when you're old.

MIT AgeLab and the AGNES suit have helped many companies design products and services that better and more realistically serve old people's needs.

As I've said many times and Joseph Coughlin says at least once in these videos, anything that improves life for old people does so, too, for people of every age. As just one example, curb cuts work as well for mothers with kids in strollers as they do for adults in wheel chairs and scooters.

We need a lot more of such seemingly “ordinary” innovations; the U.S. Census Bureau tells us that “by 2035, there will be 78.0 million people 65 years and older compared to 76.7 million under the age of 18.”

Feel free to add anything in the comments that would help not-yet-old people understand what being old is like.

(Even though they've been around online since 2014, I had never heard of The Try Guys before researching this story. They're funny while trying all sorts of things they've never done before and in addition to laughs they leave you, by the end of each episode, with some interesting thoughts, ideas, facts and information you probably didn't know before.)

Here is their YouTube channel.

”Touch is the most primitive of all the senses,” explains a physician writing in Psychology Today two years ago. ”It is the first sense to develop, and is already present from just eight weeks of gestation...

“Compared to children, adults are less dependent on touch, but older adults, who tend to be more alone, more vulnerable, and more self-aware, are likely to need considerably more skin contact than their younger counterparts.

“Therapy animals have become common in care homes, and, despite a lifetime of reservations, residents can be encouraged to hold hands or rub each other’s shoulders.”

Even with all the joy and solace pets can provide, I have my personal doubts about therapy animals - not to be confused with robot animals – but both seem to work for some people.

And a good thing that is because the older we get, the fewer friends we have. Last time I wrote about skin hunger here six years ago, one quotation made that poignantly clear (the source website no longer exists):

“One elderly woman put it this way, 'Sometimes I hunger to be held. But he is the one who would have held me. He is the one who would have stroked my head. Now there is no one. No comfort.'”

I know something about that feeling and I have no doubt some of you do too. You can't get as old as some of us are without our social circles shrinking.

Studies have shown, according to Newsday, that people who are significantly devoid of human contact or who resist or avoid touch, could be at a higher risk for experiencing depression and stress. They are likely to be less happy, more lonely, and in general have worse health...”

Further, according to Newsday,

”Satisfying your skin hunger requires you to have meaningful physical contact with another person. Although many people satisfy their skin hunger through sex, or in fact, confuse the need for touch with the need for sex, skin hunger isn't really a sexual need...

“Neuro-chemically, human touch releases the hormone oxytocin, which is shown to be integral to human bonding and in intimacy. Showing affection physically to those closest to us, from something as simple as a pat on the shoulder or back rub, or a hug establishes trust and communicates a commitment to them, and their well being, as well as to bonding with them.”

There are studies, too, showing that as little as 15 minutes a day of touching usually bring benefits. Further, according to The Atlantic,

Studies that involved as little as 15 daily minutes found that touch alone, even devoid of the other supportive qualities it usually signifies, seems to have myriad benefits...

And from The New Yorker:

“In her New York Times Modern Love essay, writer Michelle Fiordaliso makes the case for unexpected moments of intimacy between strangers. 'Touch solidifies something – an introduction, a salutation, a feeling, empathy,' she writes.”

Evidence has been piling up for years that from cradle to grave, the human touch is a necessity to our wellbeing. Newborns who are not held and cuddled do not thrive. And neither do old people. In one series of studies,

”...one group of elderly participants received regular, conversation-filled social visits while another received social visits that also included massage; the second group saw emotional and cognitive benefits over and above those of the first.”

We are living, in these current times, in a touch-free environment, where touching one another is seen as dangerous.

Maria Konnokova reported in her New Yorker story:

”Recently, the Toronto District School Board warned its employees that 'there is no safe touch when you work with children.' Many of our kids spend most of the day in a touch-free zone.

“We don’t mind getting a massage, but we fear embracing touch wholeheartedly, either because we think it’s dangerous, in the case of young children, or 'touchy-feely,' in the case of adults. We await what Tiffany Field, in 1998, called 'a shift in the social-political attitude toward touch.'”

Why wait? The evidence is strong that touching appears to help keep us healthy. Why not start changing this now?