Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
IZEA
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Friday, April 14, 2017
"This is Us" Episode Teaches Us to Slow Down; I Wish I Could Talk to My Neighbors
photo credit : By Ralf Roletschek - Own work, GFDL 1.2, https://commons.wikimedia.org/w/index.php?curid=52691236
If you haven't caught the NBC show "This Is Us" yet, you should. Last time I looked, Spectrum [my cable company ] had the entire first season on their On Demand list. The second season hasn't started yet, so there is still ample time to catch up.
If you are familiar with the show, you can skip this paragraph. If not, allow me to give a quick orientation. The show is about a couple who has triplets. Well, not really in a technical sense; you see, one dies at birth, and they now have a set of twins, or ⅔ of a set of triplets. But on the day of their birth, into the hospital comes a fireman with a baby who was abandoned at his firehouse. The abandoned baby is African-American, while the couple and their two fraternal "twins" -- one female and one male-- are white. The couple decides to take home the African-American baby to complete their intended trio. Besides, the wife has knitted three "onesies" which sport the words "big three" for the babies to wear home from the hospital. And one could say it was fate that a fireman has dropped off an abandoned baby just when they lost one. You could say it was meant to be.
Fast forward to the present. Roland [the formerly abandoned triplet, now all grown up], has recently located his biological dad William. William is dying of cancer, so Roland and his wife take him in to their home. After a few weeks, William dies and Roland and his family give William a proper sendoff. Fortunately, Roland and William have bonded and thus made William's final days fulfilling and rewarding.
At the funeral, Roland receives a box of pears from his employers at the financial firm where he has worked for decades, and where he has been disillusioned of late by his boss' admiration of a younger newer millennial hire. Roland has been disgusted by his firm's shoving-aside and lack of respect for him lately. Then, they show almost total disregard for his recent bereavement. And, as icing on the cake, they know he is allergic to pears, and a box of them has been their only acknowledgment of Roland's loss. But then, Roland gets a pleasant surprise: the mailman comes to make his daily delivery and Roland meets him at the door. The mailman then gives Roland his condolences and tells Roland that he will miss William. You see, as Roland comes to find out, every morning William would take a nice long walk around the neighborhood. And, every morning he would stop and have a conversation with the mailman, which the mailman now tells Roland he will miss very much. In just a few weeks, he has made an impact. Roland realizes that he has had the same mailman for years and never learned his name [William has] and has never said more than a passing hello to his longtime mailman . You can watch the gut-wrenching scene by clicking here
So the following day, Roland marches into his office and resigns. But before he does, he gives them an earful. First of all, he walks in on a very important meeting at which his boss and the aforementioned underling are present, but to which Roland has not been invited. So Roland tells them that he has loyally given his life to this firm and all they could do to offer condolences upon his father's death, was to send a box of pears, a fruit they KNEW he is allergic to. When his boss asks Roland where he is going now, Roland says something to the effect of "I don't know. Maybe I'll take a little time off. Maybe I'll take a nice slow and long walk in the morning. Maybe I will stop and talk to the mailman". Needless to say, the men in the meeting all have perplexed looks on their faces. But we the viewers know exactly what he means. He has been so wrapped up in his job and giving it his free time, that he doesn't even know the man who has been delivering mail to his home every day for the last umpteen years. And they didn't even take the time to acknowledge a life-changing event in his life.
How many of us have done the same thing? How many of us have been so wrapped up in our lives and the hectic-ness, we don't even notice what is around us? I knew a lady whom I worked with, who had ovarian cancer. She said to me before she died "We don't take time to smell the flowers". I would like to take the time -- now that spring is finally here -- to smell the flowers, hear the birds sing, and watch the people in my neighborhood and even in my building whose names I don't know. I wish I could speak without people running away and putting a frightened look on their faces. Once I tried to ask my FEDEX man if he had a package for me. He turned to me and yelled "What the hell is your problem?" I wish people were not so afraid of what they don't understand. And I wish I could still have a conversation and meet the neighbors who have moved into my building in the last 13 years.
Labels:
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Tuesday, April 11, 2017
Meet Putter, the Ice Cream-Loving Squirrel -- Enjoying "Wildlife" and a Summer Treat
See my post from last month about living mindfully outside. I mentioned that I love watching wildlife in my neighborhood -- mind you, wildlife in the city means birds and squirrels. If you're out at night, you may see a rat or even a raccoon. I always love watching the squirrels and their antics. I especially love Putter who is the star of this video. Putter was lucky enough to make her home in a tree above a North Carolina ice cream shop; if I ever come back as a squirrel, I will choose a tree above an ice cream shop with generous owners.
Every day Putter comes down for a treat -- a tiny cone [squirrel-size] topped with a little scoop of ice cream . When I was a teenager, we had a little dog named Tammy from whom I had to hide in my bedroom with the door closed when I had a bowl of ice cream. Tammy loved ice cream, but we found out ice cream is harmful to dogs. These days, there is a special ice cream for dogs. Anyway, I think squirrels are cute and I hate when people say they are just "rats with bushy tails". If you think along those lines, you are just a rat without fur!!
The weather is warming up in the northern hemisphere and especially in the northeast US, so if you are a PWD, senior or anyone with limited mobility, get outside and watch whatever wildlife is in your neighborhood. It's 78 degrees in New York City today and I am beginning to come out of my winter funk.
Saturday, April 8, 2017
Why is My Doctor Prescribing This Medication? Bet You Thought Kickbacks Were For the Sleazy!
Does the aroma of pizza waft through your doctor's waiting room, driving you crazy because you're fasting for blood-work? It could be a form of kickback from a company that sells pharmaceuticals or medical devices. photo courtesy Jon Sullivan/Wikimedia Commons
Have you ever gone to the doctor and seen that man or woman in a suit, and often with a briefcase, waiting to see the doctor? Worse yet, do they always seem to get in to see the doctor only moments after arriving, despite the fact that you and other patients have been waiting to see the same doctor an hour or more!!
Worse yet -- when you finally get in to see the doctor after fasting for several hours in preparation for a blood test -- does the smell of a hot pizza make you even hungrier? All these scenarios have happened to me -- and even all at the same time, while waiting to see my doctor. Have you ever wondered who those suited-up people are, who seem to get priority over us dumb but patient and sometimes-starving medical consumers.
Read this article from Mediguard which backs up what I am saying. Furthermore, the next time you are in your doctor's office look around at the notepads, clips, magnets and other little office goodies with the logos of medical device and pharmaceutical companies. These bring back memories of the little amenities with the cute Cayman Airways "Sir Turtle" logo I used to throw at my travel agents. "Get the name in front of them and they will book us", advised my mentor Winston ad nauseam. Medical reps work the same way -- they are no more sacred than representatives of any other company. They are rated, reviewed and keep their jobs according to prescriptions written in the regions they cover.
Am I telling you what you already know? What's a little notepad or a pizza between representative and doctor? Can it be true that doctors get kickbacks? Will that little magnet or that pizza really induce a doctor to write a prescription? Studies show that the answer is "yes" and the article I linked above, also points out that the amount of kickbacks -- oops compensation -- to doctors who actually see patients, may be higher than you ever imagined and can even induce a doctor to do less than what's best for patients because they sense a need for reciprocity. That's how sales and promotions work, even in the medical world which we are somehow programmed to think is less sleazy than the "real world". Yes, kickbacks are not just for the skanky among us.
Finally, why should you know this and what can you do with this information ? I say it again and again -- question your doctor when s/he prescribes a new medication . Ask questions like "why are you prescribing this?", "what are side effects?" and the ever-important "Is there a less-expensive generic version?" I have shared in this blog that there are doctors who resent these questions [I had a doctor who said "when you graduate from med school, you can question me"]. Any doctor who refuses to answer these types of questions, deserves to be changed. When you get home, read anything you can, about the new medication. Don't hesitatetate to take up the doctor's precious time because your life is just as precious. If the doctor seems to give you the bum's rush, remind her that her pizza or fried chicken can be reheated in the office microwave.
Read this article from Mediguard which backs up what I am saying. Furthermore, the next time you are in your doctor's office look around at the notepads, clips, magnets and other little office goodies with the logos of medical device and pharmaceutical companies. These bring back memories of the little amenities with the cute Cayman Airways "Sir Turtle" logo I used to throw at my travel agents. "Get the name in front of them and they will book us", advised my mentor Winston ad nauseam. Medical reps work the same way -- they are no more sacred than representatives of any other company. They are rated, reviewed and keep their jobs according to prescriptions written in the regions they cover.
Am I telling you what you already know? What's a little notepad or a pizza between representative and doctor? Can it be true that doctors get kickbacks? Will that little magnet or that pizza really induce a doctor to write a prescription? Studies show that the answer is "yes" and the article I linked above, also points out that the amount of kickbacks -- oops compensation -- to doctors who actually see patients, may be higher than you ever imagined and can even induce a doctor to do less than what's best for patients because they sense a need for reciprocity. That's how sales and promotions work, even in the medical world which we are somehow programmed to think is less sleazy than the "real world". Yes, kickbacks are not just for the skanky among us.
Finally, why should you know this and what can you do with this information ? I say it again and again -- question your doctor when s/he prescribes a new medication . Ask questions like "why are you prescribing this?", "what are side effects?" and the ever-important "Is there a less-expensive generic version?" I have shared in this blog that there are doctors who resent these questions [I had a doctor who said "when you graduate from med school, you can question me"]. Any doctor who refuses to answer these types of questions, deserves to be changed. When you get home, read anything you can, about the new medication. Don't hesitatetate to take up the doctor's precious time because your life is just as precious. If the doctor seems to give you the bum's rush, remind her that her pizza or fried chicken can be reheated in the office microwave.
Thursday, April 6, 2017
Murder Case of ALS Patient Could Lead to Further Prejudice and Misunderstanding
Although the story is from 2015, it raises concerns even today. Read the full story here. To summarize a Wisconsin man was on trial for murder. In an unprecedented case, the jury in the case, has found the then-40 year-old former sheriff's deputy not legally responsible for shooting to death his wife and sister-in-law because he had developed a form of dementia related to his disease.
In reality, about 50% of ALS patients can develop cognitive problems and only 10% develop a frontotemporal dementia with severe cognitive impairment. But the defendant had written a note on his phone the day before the shootings, in which he fabricated an elaborate three-way suicide pact as a cover-up. And that day, he also bought charcoal for his grill, which he subsequently lit in his house in order to commit suicide via carbon dioxide poisoning. The prosecution maintained that the actions the day before proved premeditation and couldn't have been performed by someone with cognitive disorder. Furthermore, experts on ALS say that even in patients with severe frontotemporal dementia [FTD], they have never seen acts of such violence as those committed by the ALS patient on trial.
Neurologists who work with ALS patients are confounded by the jury's decision -- that the shooter was innocent due to his neurological condition which caused him to act impulsively and irrationally. Doctors are concerned that this case could erroneously brand ALS patients as violent. They say that even with ALS patients who do suffer FTD, they have only seen docile and apathetic attitudes.
I wonder if the jury's decision had as much to do with pity, taking into account that this defendant had a short life ahead, filled with its own suffering and hardship. In a strange twist, I am in agreement with the neurologists who say that this can set a dangerous precedent -- one I know all too well. You see, I see first-hand all the time, evidence of the fear of this disease. I hear loved-ones tell me straight up that they are concerned about being around me because they "wouldn't know what to do if something happened". When I ask what "something" is, they shrug. I was recently with a group of people who held their breath every time I coughed, even though there were members of the group who coughed at least twice as much as I coughed, but nobody flinched when they did it.
It really puzzles me when some people ask me while I am eating "Are you okay?" every two minutes. The discomfort on some peoples' faces can't betray the dread and fear of this disease.
Now do we really need the fear that I will somehow fly into a sudden rage and kill everyone?
In reality, about 50% of ALS patients can develop cognitive problems and only 10% develop a frontotemporal dementia with severe cognitive impairment. But the defendant had written a note on his phone the day before the shootings, in which he fabricated an elaborate three-way suicide pact as a cover-up. And that day, he also bought charcoal for his grill, which he subsequently lit in his house in order to commit suicide via carbon dioxide poisoning. The prosecution maintained that the actions the day before proved premeditation and couldn't have been performed by someone with cognitive disorder. Furthermore, experts on ALS say that even in patients with severe frontotemporal dementia [FTD], they have never seen acts of such violence as those committed by the ALS patient on trial.
Neurologists who work with ALS patients are confounded by the jury's decision -- that the shooter was innocent due to his neurological condition which caused him to act impulsively and irrationally. Doctors are concerned that this case could erroneously brand ALS patients as violent. They say that even with ALS patients who do suffer FTD, they have only seen docile and apathetic attitudes.
I wonder if the jury's decision had as much to do with pity, taking into account that this defendant had a short life ahead, filled with its own suffering and hardship. In a strange twist, I am in agreement with the neurologists who say that this can set a dangerous precedent -- one I know all too well. You see, I see first-hand all the time, evidence of the fear of this disease. I hear loved-ones tell me straight up that they are concerned about being around me because they "wouldn't know what to do if something happened". When I ask what "something" is, they shrug. I was recently with a group of people who held their breath every time I coughed, even though there were members of the group who coughed at least twice as much as I coughed, but nobody flinched when they did it.
It really puzzles me when some people ask me while I am eating "Are you okay?" every two minutes. The discomfort on some peoples' faces can't betray the dread and fear of this disease.
Now do we really need the fear that I will somehow fly into a sudden rage and kill everyone?
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