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.

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.

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?

Thursday, March 30, 2017

Visitability and Accessible Homes






Okay. As a PWD who loves living in the community and not in an institution -- there are hurdles and challenges, as we all know.  It is due to these challenges, that activists before me blessed me and other PWDs with the passage of the ADA [Americans with Disabilities Act of 1990].  Before the ADA, PWDs were largely confined to their homes [IF they were lucky enough to have a support system that allowed them to do that] and a limited number of places that just happened to have an entrance without steps, elevators and wide enough spaces to maneuver a wheelchair.

So the concept of the ADA was born many years before 1990, and I am grateful for the activists who fought tirelessly for the bill's passage a good 14 years before I would need it.  At the time the ADA was passed, I was an airline sales manager who attended many meetings with travel agents who were very vocal about how "unfair" it was that they had to comply with the ADA and put ramps at their entrances and retrofit their restrooms to be ADA-compliant.  Let me be honest: during this time, I was wearing a size 4, walking with heels and working out at a gym 5-6 times a week.  Although I was sympathetic with PWDs, I never dreamed I would ever need use of a ramp or a grab-bar.  I'm a little abashed to say that I could see both sides of the argument:  I knew it was important for PWDs [which I called "handicapped" at the time] to be able to enter places of business, but I could also sympathize with small and privately-owned businesses that had to shell out tens of thousands of dollars to make structural changes for the one or two wheelchairs a year to grace their premises.  After all, PWDs who lived in the community were not as common as they are today.  Couldn't they just send a friend or family member to do the errands for them?  This was also a time when airlines were cutting travel agents' commissions, and airline and travel industry forecasters were predicting that some day down the road, travelers would be able to book their reservations and even print their own tickets and boarding passes on personal computers in their own homes!  So travel agents were livid at the prospect that they could be obsolete one day.  This ADA was the icing on the cake.  I got it.


Fast forward to the present.  How many people use travel agents?  How many travel agencies still exist?  And we all know the impact of the ADA: ramps, curb-cuts, automatic push-button entrances.  We still have a way to go: I still have to send an aide into my local bagel shop and Chinese takeout because they have steps at their entrances.  And I have even blogged about doctors' offices where I had my breasts examined in hallways -- see my post of Friday, August 21, 2015  [I avoid those now]. We can now sue those establishments that remain inaccessible [I haven't had the time to take on the bagel baker, the Chinese takeout or the pizza shop that put down a hazardous concrete "bump" -- I've had to choose my battles].


There remains a huge obstacle -- visiting friends.  I cannot visit most of my friends.  Even with a portable ramp which only goes over one step, I still cannot visit most peoples' homes.  I'm getting tired of hearing "I would love to invite you for Christmas/ New Years/ Easter/ Passover/ my kid's birthday party/ my birthday party/25th anniversary party/ to hang out and have dinner......fill in the blank. It's bad enough that even if I could get in, I can't use the bathroom, which is often too small to fit my wheelchair and never has grab-bars.


  I start to wonder "Is this a handy excuse?", but in most cases, I know it's not; in most cases, I know these people would like to have me and don't want me to spend holidays alone, or to bring leftover food or birthday cake to me after-the-fact. Even my own sister and her family invite me for Thanksgiving every year and have to carry me up six steps in my manual wheelchair.  What do I do?  I don't expect them to change the venue just because of me; they want to hold a celebration in their own homes and it's not their problem if I can't get in.  How about this?  There are people whom I met since I became a wheelchair user and/or have moved in the last 13 years, whose homes I have never seen and never will see. "Visitability" is still a hurdle to deal with.  If I could afford to install an elevator at my sister's home [a ramp accessing 6 steps is impractical] and accommodations at my friends' houses, I would do it.  But alas, I'm not a Trump


Enter the Home Modification or Visitability Tax Credit.  This credit helps with home modification to allow a PWD to live in the community rather than suffer a homebound existence or -- worse yet -- life in an institution.  And with people living longer, "aging in place" has become a choice, there is a need for accessibility for residents who use wheelchairs, walkers and canes as they age. The New York State Legislature has included the Visitability Tax Credit in both the Senate and Assembly's one house budget proposals! If you live in New York State, please follow the instructions below, to make sure the tax credit is included in the final budget! Tell Governor Cuomo To Support Community Living.


Don't live in New York State or even in the United States?  Find out if your state, city, county, province or national legislative body has a law like this on the books or in the works,  If not, use New York State as a reference and try to spearhead an effort to legislate such an act in your area.  It is an essential element in community living for PWDs.



 Action: Call Governor Cuomo today at 518-474-8390 and urge him to support the inclusion of the Senate and Assembly's proposal for a Visitability Tax Credit in the final budget!

Rather than leaving a message, press # 3 to ask to speak to an assistant.
         
Say: "Hello, as a person with a disability, I am calling to urge Governor Cuomo to support the inclusion of the Visitability Tax Credit, which was included in both the Senate and Assembly's one house budget proposals. This tax credit would help people with disabilities and older New Yorkers with the costs of making their homes more accessible and would allow people to age in place "





Wheelchair ramp leading to the main entrance of the South San Francisco Main Library, South San Francisco, California.
By BrokenSphere - Own work, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=3864507.

-  One no-step entrance

- An accessible path to the door
-  hallways and doorways wide enough to accommodate a wheelchair
- An accessible bathroom on the first floor
 The NYS legislature passed similar legislation in 2015 and 2016. Governor Cuomo vetoed this legislation twice, indicating his support for the concept, but stating it had to be done in the context of the Budget. Unfortunately, Governor Cuomo didn't include this in his proposed Executive Budget.Background: The disability community has long advocated for New York to increase the accessible housing stock across the State by incentivizing the use of "visitability" design standards. This includes basic accessible features, including: 


Last year, it was determined that there was a need to better understand the cost estimates for such a program. For this reason, the sponsors included a $1 million cap per year in aggregate to A.9303/S.6943. As the program would now be considered a pilot project, the State has five years to determine whether this cap is sufficient to meet the needs of the population.

Due to the high cost of home modifications, many people cannot afford to make changes to their homes to make them more accessible, or to move to a more accessible home. Most prefer to remain at home rather than move to nursing facilities or different, more accessible housing as their needs change. However, many are forced out because their homes are no longer safe or practical for them to live in. This tax credit will help to ensure that people with disabilities and older New Yorkers are able to afford these modifications and remain in their homes.
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Monday, March 27, 2017

A Scene Out of Hitchcock's "The Birds", But a Lot Less Scary. Shutting Up and Hearing the Bird Sounds








So I ventured outside last Sunday for the first time in -- seemingly-- forever.  We had a blizzard the previous week and I could see the NYC Sanitation trucks that were deployed to remove the snow drifts that had been formed by the plows during the snowstorm.  More than half of the corner curb-cuts were still impassable and the ones that were passable, were deep puddles of melted snow.  It was messy to say the least, but the weather was mild enough to make it a pleasant walk.  All in all, I was happy to have ventured out, because sometimes it's just so much easier to sit in front of the computer or TV [or a combination of TV and hand-held device] and let time slip away.  I'm still so baffled when people ask me "How do you fill your time?".  Even as a child, I have had no problem filling time --there's always something to read or watch. Even when I was a little kid and Saturday and Sundays were TV deserts [even in the US], I could find an encyclopedia or magazine or newspaper to amuse me.  In fact, that's how my obsession with crossword puzzles was born.  These days, there simply aren't enough hours in the day for everything I love to read, watch and do.

But this past Sunday on my outing, my aide was walking behind me, and I had no friend jabbering at my side.  I had just my own silence and thoughts.  And I noticed something I really never noticed.  There seemed to be birds everywhere -- on the overhead wires, in the trees, and on roof overhangs.  And there seemed to be thousands of birds flying in the air above me.  And all around me, there was a loud symphony of tweets, chirps and caws.  It was so loud that it was surreal!!  It was almost as if someone hired an orchestra to replicate bird sounds, and play loudly all over the neighborhood.

Now, I should explain about the area in which I live:  it's part of New York City, but it's in an "outer borough" of Queens.  When tourists come to New York, they might fly into two of the three NYC airports -- LaGuardia or JFK -- which are in Queens.  But the majority of visitors usually hightail it to Manhattan, and will see nothing but concrete and skyscrapers -- until they visit Central Park.  Where I live, there are stores and apartment buildings [most of which are not taller than six stories high].  And the streets are lined with trees, many of which are a half-century old or more -- from the time when my neighborhood was carved out of farmland after World War II.  I love some of the old oak and elm trees on my block, and lately have been disheartened by some of them being chopped down replaced by younger and shorter shoots.  I guess there are diseases that trees get and from time to time they are chopped down before they fall and do serious harm.  But some of the trees in front of my building are so fare and developed that -- when fully foliaged -- they form a leafy umbrella over my street when they meet a tree across the street.  

These mature and stately trees are full of nests in the spring, for birds as well as squirrels. But that day, it really seemed as if the birds shared my thoughts: Finally, spring is here!!  It was hard to tell if I was seeing thousands of baby birds or a combination of baby sparrows and the smaller starlings, but I saw a lot of babies flying low and on the ground, with cute little baby bird faces and softer, tuftier feathers.  Why hadn't I noticed this beautiful noise before?  Probably because I had so much of my own "noise' in my head.  We truly have to all get outside, take our eyes and ears off the "devices' and just be with nature -- even on a city street.  I didn't see too many squirrels-- maybe the little ones are still in their nests. But I love watching their antics when they do come out.  It was nice to turn off the noise in my head and listen to noise of city nature.

Monday, March 13, 2017

BOOKSHELF: 60-Second Sweat: Get a Rock Hard Body 1 Minute At a Time by Patrick Street :

For many people with chronic disease or disabilities [PWDs], exercise is essential, but getting to a gym is a much more complicated    experience.  Also, many PWDs do not have the stamina for a  60- or 90-minute workout or run on a treadmill.  And for wheelchair-users, it's not easy to find a gym with wheelchair-accessible machines.  PWDs are more at risk for obesity and the diseases that go with it -- diabetes, heart conditions, hypertension and blood clots [DVT included]. The best defense against these life-threatening conditions, is a movement program.

 On January 2,  many of you planned to shed the holiday pounds and shape up for the new year. And by now, many of you  have failed. But the thing is we all have the time – we just don't know it yet.  Patrick Striet, one of Self Magazine's 50 Hottest Trainers specializes in High-Intensity Interval Training and Metabolic Resistance Training. His meticulously designed program allows his clients to shed the pounds and build the muscle in no time flat. His new book THE 60-SECOND SWEAT will show you how to put his training and philosophies to work at home (or in the gym) by following the safe and effective program which is packed with exercises that are all done in a minute or less.

Reviews on Amazon have been raves. I personally found enough exercises that I could adapt to doing in a sitting position .  And -- just as importantly -- the exercises in this book can be performed with light-weight dumbbells and/or resistance bands, which can be bought online for a reasonable cost.  There is no need for expensive equipment, and can be done at home.  I belong to a gym, but can't get there as often as I would like.  The ability to fill in with a home-exertise program is very important to me.

For the past 15 years,  Patrick Striet has run a fitness training facility where he has worked with hundreds of everyday men and women—working moms, college students, senior citizens, middle-aged men… plus a few elite athletes! Through this experience, he has identified the significant barriers people face when it comes to exercising consistently—lack of time, lack of results, injuries, boredom—and specifically designed the 60-SECOND SWEAT to address them.
Now Reader's Digest and Patrick Striet have teamed up to transform this HIIT and MRT training program into a book to help readers at home enjoy the same benefits Mr. Striet shares with his clients. The 60-Second Sweat is:
  1. Efficient: The 60-Second Sweat combines HIIT (High-Intensity Interval Training) with MRT (Metabolic Resistance Training) to build strength along with cardiovascular fitness in one comprehensive workout. 
  2. Effective: Research has shown that HIIT is more effective than traditional steady-state workouts for building cardiovascular fitness and shedding fat, while MRT builds muscular fitness, which is key for boosting metabolism. 
  3. Safe: Keeping in mind the cranky knees, aching backs, stiff shoulders, and sore necks that many desk-bound adults face, the 60-Second Sweat gives equal weight to every muscle group. 
  4. Varied: You will never perform the same exercise or activity for more than 1 minute, so you will never get bored. Every exercise, set, rep…every minute…will help develop the best and fittest you!

Patrick Striet, CSCS is a Certified Strength & Conditioning Coach and the 15-year owner/operator of Cincinnati, OH based Live Fit Cincinnati, LLC, a boutique fitness facility specializing in customized private and semi-private personal training and online fitness and nutrition coaching. In addition, he is a freelance fitness writer who has written for numerous magazines, books and websites including Men’s HealthMen’s FitnessThe Women’s Health Big Book of Abs and livestrong.com. He serves as the fitness correspondent for 700 WLW radio, as an advisory board member and content contributor for prosource.net and, in 2013, was named one of Shape magazine’s “50 Hottest Trainers in the United States.” Patrick, who is also working towards a high level sports nutrition certification, lives in Cincinnati, OH.