I have migrated this blog to a new platform:  It's still the same great blog, only better and you can access it at sitstillshutup.org.  Moreover, check out my other blogs:

taste-buds.org : about eating mindfully including food anthropology -- how food relates to culture and history, healthy eating including probiotics and anti-inflammatory foods, and the latest trends in food and cuisine

mid-50s.org: a blog dedicated to post WWII baby-boomers [bornnt  1945-1964]

inspo-media.org : review and promotion of books, TV shows, movies, blogs, magazines, podcasts and any entertainment that can be heard or seen that inspires, educates or enlightens or enriches the mind, body or soul. Think Oprah for the rest of us.  No, I won't be giving out cars, sadly.

I'm hoping you will continue to follow me.

Health-Care Bill Unveiled -- Benefits the One-Percent, Ends Medicaid & Medicare As We Know It.

I have not been as active as I should have been.  After seeing a documentary about Vietnam on the National Geographic Channel on Memorial Day, I suddenly became ashamed that wasn't more of an activist against that stupid.  True, I was in Junior High and High School during most of the Vietnam War, but I was more focused on keeping up my A- average and being a good girl to get my parents' approval, than standing up for what was right and just. As it turned out, I could never do enough to get my parents' approval no matter what I did [but that's a matter for the therapist's couch].  As for working on doing what makes me feel good and not seeking the approval of others?  [sigh] What can I say?  I am forever a work in progress.

My life, and the lives of so many others depend on proper medical care and many of us depend on Medicare and Medicaid.  The new Health Care bill was finally partially unveiled yesterday, and no wonder it has been shrouded in secrecy: it sucks for the middle class and its drastic cuts in service will supposedly fill the deficit caused by tax cuts for the rich.  Yes, you guessed it: Once again, Trump and his cohorts twist around things in order to screw the poor and middle-class, and benefit the 1%

My message to all the coalminers and working-class people out there who bought Trump's lies about helping the working man -- I certainly hope you're all happy when you suffer from mesothelioma, black-lung disease, and whatever other occupational diseases befall the workers who dig, drill, build, chop, saw, assemble and meld -- and find that your medical insurance [if you even have it] doesn't pay squat.  See if Trump gave a damn that you might go broke, lose your home, starve and die a lot earlier than you should have.  See if you're still happy about that vote for Trump in November, 2016.  

Democrats hate the bill and so do a lot of Republicans.  That fact doesn't console me, and it shouldn't console you either.  Read this Op-Ed column by David Leonhardt in the New York Times today and see if it doesn't make you want to fight,  And, as I have said many times before, you are sadly misled if you think Medicare and Medicaid are only programs for the poor.  You are also sadly naive if you think you will never need catastrophic coverage -- one bout of cancer or heart disease has wiped out many a family financially.  Be scared; be very scared.  But don't stop there -- write letters to your senators and representatives in Congress and let them know that if they support this bill, you will not vote for them in the next election!

As for myself, I will be looking for ways that I can be more of an activist within the limitations of the health I have been lucky to have thus far.

Why People With ALS, Cancer or Any Serious Chronic Illness Should Fear the Trump Budget

Not only Americans with ALS, but anybody with a neuromuscular disease -- in fact, anyone with a chronic disease -- should do anything possible to block the Trump Budget Plan.  It's not enough that the Trump administration wants to repeal the Affordable Care Act [nicknamed "Obamacare"].  But Donald Trump's administration wants to make drastic cuts to Medicare, Medicaid and Social Security Disability.  If you're reading this and erroneously think "that will never be a concern of mine", then I'm happy your psychic powers have assured you that you will never get sick.  "Okay, but I have enough money put aside for emergencies", well think again.  I have personally seen many wealthy people go broke from a family member's chronic illness.

But I can't say it better than Rachel Doboga in her HuffPost Article.  Just remember as you read: although Ms. Doboga is writing from the perspective of an ALS patient,  you can apply this to Cancer, MS, Parkinsons Disease or Dementia; even Diabetes and Arthritis in a lot of cases.  Even the best medical insurance can fall short when you or a loved one has to stop working and maintain himself through a chronic disease.

Local Honey to Fight Allergies? and as an Anti-Oxidant, Anti-Microbial and Anti-Inflammatory

Lynette and a giant bee at the 2015 NewYork City Honey Festival on the Boardwalk at Rockaway Beach.  We had the opportunity to meet local beekeepers and taste dozens of varieties of honey.


HONEY!! Just the word conjures up images of Winnie the Pooh, tea with honey, Middle-Eastern pastries like baklava soaked in it, and teaspoons of it soothing a sore throat.  I used to have it in my tea every day -- I have -- at minimum -- a cup of anti-oxidant green tea and at least a cup of black tea later in the day.  For a long time growing up, I associated tea and honey with an upset stomach.  But then I became a sort of tea connoisseur.  I remember a throat lozenge called "Honees" that I loved, because in the middle it oozed out real honey;  I bought them even when my throat wasn't sore. Mmm those things got me through my first winter as an airline reservationist.  But I digress.

I am a serious allergy sufferer. I mean all day, every day.  I pop a Zyrtec every morning and use nose sprays, and on some occasions I even have to add a benadryl if my eyes puff up or my skin breaks out in hives.  A walk in the woods means extra medication.  The beach is the best place for me, according to my old allergist, a venue-restriction that suits me perfectly.  Anyone who knows me, knows that I live for the beach.

So, I am learning that local honey can help alleviate allergies because it is derived from the honey made from the flowers near where you live.  Watch this video from ABC-TV NYC Eyewitness News.

It's important that the honey be local. The video talks about Andrew's Honey, which is based in NYC.  So if you live in Manhattan, Queens, Brooklyn or the Bronx, click on the above link and find the honey produced in a rooftop hive in your neighborhood.  If you don't live in NYC, go to a local farmers' market or general store that sells local honey for your area.  I haven't tried it yet, but I am planning to order the "Forest Hills Honey" which is closest to my home.  I will try anything.

Cheers and Jeers: Teenager with Disability Meets NY Yankees and "X-Files" Mulder Perpetuates Bad Stereotype

By Unknown - created in Adobe Illustrator by user SixFourThree, Public Domain, https://commons.wikimedia.org/w/index.php?curid=7888984

CHEERS!! to the MLB NY Yankees

A North Carolina high school senior traveled to New York yesterday to fulfill a lifelong dream: to see his Major League Baseball idols -- the New York Yankees -- play at Yankee Stadium.  This was made possible by his classmates.  But he got more than he expected, because he got to meet the team members in person.  Watch this video or read the story from ABC Eyewitness News in New York City

Fox Broadcasting Company - US logo for The X-Files. MoviePosterDb.com (December 6, 2009). Retrieved on September 18, 2012.

JEERS!! to Agent Mulder of "The X-Files" [actually, the writers]

Talk about things that make you go "Grrr".  A character on a popular TV show with a cult following like the global favorite "X-Files" perpetuating the stereotype that People with Disabilities [PWDs] can be excused for a substandard work ethic, is deplorable.  What's even worse:  there are still employers who won't hire a PWD because they think a PWD can't do a job as well as an able-bodied hire or won't be reliable and dependable.  We won't even get into the statistics and studies that show that PWDs tend to be more productive and reliable than their able-bodied counterparts.  And, there are still HR people out there who are afraid to hire PWDs because there is a bigger likelihood they will be sued, or because making certain accommodations will be too costly.  Although I am not in the job market like much-younger PWDs, I have suffered enough attitudinal barriers to allow me to appreciate how difficult those barriers must be when they are barriers to earning a living and enjoying independence rather than depending on public assistance!  

Check out this article about "Attitudinal Barriers" we PWDs face and how they can affect every area of our lives, but especially the right to earn a living on the website of the National Collaborative on Workforce and Disability. If you are a PWD, you will nod at prejudices you recognize; if you are able-bodied, you might see attitudes listed that you never realized existed in yourself -- if you are prepared to admit it.  And, ask yourself, if you were to substitute the words "African-American", "Hispanic", "Gay" or "Woman" in place of PWD, would these attitudes be okay?

Inclusion: Do You Avoid Inviting a Friend With a Disability to a Holiday Celebration at Your Home?

Holidays can be lonely times, especially for People With Disabilities.  I know that holidays are very depressing for me because most of the time I am forced to sit at home with a caregiver.  Read my post about "Visitability" [March 30, 2017] to learn about challenges many of us have to face when other people don't have  accessible homes.  But sometimes the barriers are more subtle. Many times, the host or hostess just feels uncomfortable about some disabilities.  But the excuse I hear most often is "I don't want [the PWD] to feel bad if other guests make [the PWD] feel uncomfortable" or they are afraid someone else will say something hurtful.  It's unbelievable in this day and age, but I still have neighbors who can't look me in the eye, ask my caregiver about me while I am right there or just avoid me. there is still so much fear around disability. Indeed, I have attended many gatherings where I could feel the discomfort of other guests toward me.  But, if just one guest leaves the get-together with a more enlightened attitude toward PWDs and realizes there is a HUMAN BEING sitting in the wheelchair, I have accomplished something.  As a PWD, I just have to decide whether I want to go, and risk a little discomfort, or sit at home isolated.  I have learned two things over the dozen+ years as a PWD: first, this excuse of fearing hurt to the PWD is usually no more than just that -- an excuse -- and reflects the discomfort of the host/ess.  the second thing I have learned is that the experience is often not as uncomfortable as I imagined.  I have learned that my speech problems and using a device with a text-to-speech app, present a new challenge for almost anyone.  including me in the conversation is a skill that has to be learned; as time goes on and PWDs survive longer and move about with more independence and inclusion, there will be more awareness from the able-bodied about how to relate to us.

Jennifer Laszlo Mizrahi is the President of RespectAbilityUSA, a non-profit organization working to empower PWDs to achieve the American dream. she has written an article entitled "10 Tips For Including People With Disabilities in Purim and Passover".  But don't let the title dissuade you if you are not Jewish.  You can apply these tips to any holiday, religious or not -- Christmas, Easter, Thanksgiving, New Year's Eve or Independence Day [or just an informal barbecue].   There are ways to prepare guests and head off any awkwardness.  And including a person with a disability in a get-together might just enlighten and dispel myths about PWDs, while bringing a PWD out of isolation.  I can attest to the fact that after becoming disabled, I suffer from isolation and loneliness during most holidays, because I am excluded from most get-togethers these days.  Christmas 2016 and Easter 2017 were much brighter this year for the first time in a dozen years, due to a friend's inclusion of my presence at her celebrations.  I was so grateful. After reading Ms. Laszlo-Mizrahi's article, able-bodied readers should make an effort to include a person with a disability at their next holiday [or any] gathering.

"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.

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.

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.

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?

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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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.

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 Health, Men’s Fitness, The 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.

Beware the Dreaded Wheelchair -- The Worst Fate to Befall a Human Being?

By This photograph was taken by White House staff. As a product of the executive office, this image is in the public domain. - White House photo via www.technology.gov/Medal/2000/p_Photos-Clinton.htm, Public Domain, https://commons.wikimedia.org/w/index.php?curid=8304951

Ask anyone who has suddenly received a diagnosis of a disabling disease, "what was the first question or concern you had?" and they will probably recollect that they wondered "Will I end up in a wheelchair ?"  For some reason, that thought overshadows almost every other concern, because that is the most discernible and visible thing we notice about any PWD with a movement disorder.  Suddenly, that seems like the worst fate that can befall a human being, aside from death.  And often, people express that death is preferable to "ending up in a wheelchair".

And sometimes the wheelchair-- or the idea of it -- is used as a threat. Huffington Post blogger Emily Ladau cites a perfect example in her 2015 article "Beware the Scare Tactics: Stop Negative Portrayals of Disability in PSAs"   Emily cites a public service announcement [PSA]  The PSA is about osteoporosis and urges its viewers to take care of bone health, or they will meet a hideous fate -- ending up as a wheelchair user . Click on the above link and read this wonderful article by a New York disability activist who tells it more eloquently than I ever could.

Says Emily "The ad shows a manual wheelchair being rigged to move via remote control, and then set loose in public while empty to chase people down. Combined with creepy horror movie music, the visual of an empty wheelchair moving on its own is meant to somehow convey the risks of osteoporosis".  Oh, the devious wheelchair!! Out to get you and -- worse -- put your body in it for life!! And the PSAs tagline? "Beware the Chair!" Oh my God!! The wheelchair?  Not the wheelchair!  Oh God, don't let me end up in a wheelchair!

It's amazing how many people, upon learning of my diagnosis in 2004, asked "Will you end up in a wheelchair?" and not "Are you scared?"  or even "Is there anything I can do to help?"  I wonder if these same people would ask a friend who had been diagnosed with cancer "Are you going to die?"

Now don't get me wrong: I would rather be walking and not dependent upon a wheelchair, but I share Emily's sentiment that it's not something to present as a threat of doom.  There are concerns that have come to bother me a lot more than the fact that I am a wheelchair user, the obvious one is that I have a disease for which there is no really effective treatment, is incurable, and always fatal.  That last one is what freaked me out more than the wheelchair, believe me.  My dreams blowing up in smoke at the age of 48 -- slim-to-none chance of ever having sex again or even finding a relationship at all, the fact that my friends and many relatives were running the other way, having to eventually share my tiny apartment with aides and losing my ability to speak -- just to name a few.

And this article made me think of other fates that are thrown in our faces, fates which often don't turn out to be as bad as we are led to believe.  Like how many times did the adults in my life tell me that if I didn't change some aspect of my "behavior", I would end up unmarried.  A dear departed aunt used to tell me that if I didn't "lower my standards" [her exact words] i.e. relax my criteria for a mate, I would "never find a man" and "be alone the rest of my life".  and a variation of that was my frequent warnings that I needed to be tolerant of other people's lousy abusive habits or I would end up "a lonely old woman".  

Well, I'm an unmarried woman in a wheelchair and I survive and even thrive. The depiction of the wheelchair as a fate to be dreaded is another stab in the back of me and every other PWD,  and further contributes to our image as something to be pitied and an example of what you can become if you don't take care of yourself.  What about you?  Have you ever been threatened with a "you don't want to end up ____________ [fill in the blank -- in a wheelchair, a lonely spinster, a pathetic homeless person.........].

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BOOKSHELF: The Final Day by William R. Forstchen -- very timely look into "WHAT IF..."

The Final Day is third in a series by New York Times bestselling author William R Forstchen featuring protagonist John Matherson; the first book in the series has already been optioned for a Warner Brothers movie.  Months before it was even published, the first in the series -- One Second After was touted on the floor of the US Congress as a must-read book for all Americans.   The riveting story of our nation's struggle to rebuild itself after an electromagnetic pulse plunges the country into darkness, starvation, and death was followed closely by the acclaimed One Year After, continuing the Matherson saga. 

With our nation still at odds over the result of the presidential election, military historian Bill Forstchen offers something for both sides of the political aisle in a riveting plot that has citizens united in an attempt to preserve a beloved America.  Like its two predecessors in the Matherson series, this new novel entertainingly blends folksy and sophisticated, small-town nostalgia and sharp futurism...a thoughtfully rendered, richly detailed investigation into the 'What if.'"  The Final Day picks up after John Matherson and his community defeat the designs of the alleged federal government. Now they have returned their attention to restoring the technologies and social order existing prior to the EMP attack. When the government announces that it is ceding large portions of the country to China and Mexico, General Bob Scales is sent to confront Matheson. The Constitution is no longer in effect, and what's left of the U.S. Army has been deployed to suppress rebellion in the remaining states.

General Scales is John's former commanding officer and closest friend from prewar days. Where do his loyalties fall?  Might he be the crucial turning point in the quest for an America that is again united? When news breaks that members of the federal government knew an EMP attack was coming long before it hit, the government might get exactly what it fears: revolution.

William R. Forstchen is the New York Times bestselling author of One Second After. He holds a Ph.D. in history from Purdue University, with specializations in military history and the history of technology. Forstchen is currently a faculty fellow and professor of history at Montreat College, near Asheville, North Carolina.

Why Everybody Needs to Care About Community Home-Care and a Living Wage for Aides

The short answer is that eventually, either you or your spouse or your parent or even your child, might find yourself or themselves in a position of no longer being able to self-care and self-manage.  It's nice that more and more children are getting to coexist with grandparents or even great-grandparents, due to longer life expectancy -- I had a grandmother I never met because she died seven years before I was born and the other three grandparents died when I was in my late teens.  I wish my grandparents were around when I was a little more mature and valued their histories and stories.  But, along with the good fortune of older relatives living longer, comes the burden of their frailty and the need to care for them.  Also, children with disabilities and serious illnesses can live longer than before, but often also need help.  Especially children with neuromuscular diseases and diseases like Cystic Fibrosis and Cerebral Palsy, who formerly did not live into adulthood, now live many more years and continue to be valuable to their communities and the familiees.  Ditto for adults diagnosed with formerly life-threatening diseases like AIDS and forms of cancer who might have died within months a decade ago, but are surviving longer.  The need for community-based care will only increase; it is costly and impractical to expect family members to give up their lives to care for weak and disabled loved ones.

On February 13, people with disabilities [PWDs] traveled to Albany to meet with their respective assembly-members and state senators to lobby for more funding for community-based care.  This was a tremendous sacrifice for the PWDs who went for a whole day in the freezing winter cold.  Those who could not go to Albany -- like me -- will meet with our respective legislators during winter recess, here in their NYC offices.  Like those who went to Albany, we will tell our story and present a case for higher pay for home health aides [HHAs].  A week later, PWDs attended a hearing in Manhattan about funding for home care.  I am lucky to live in a district with legislators who are in favor of paying home health care workers a living wage.  When I meet with them later in the month, I will be preaching to the choir, but many of my counterparts will have to do a harder sell.

So we have an increasing need for home healthcare workers.  In fact, the field of community healthcare is expected to be one of the fastest-growing career categories for the 21st century.  But what can a home health aide or home attendant expect to be paid?  At present, the per-hour rate for a home attendant hovers around $11 an hour.  And it's been at this level for about a decade.  Has the price of groceries, fuel, utilities, rent or transportation stayed the same?  Of course not. This means s/he can hope to make about $22,000 annually IF [AND ONLY IF] s/he works 40 hours a week [many HHAs work for agencies that give a lot less hours].  Lately, patients and their families -- especially in cities with high costs of living like New York and San Francisco -- have found it difficult or impossible to find good and reliable HHAs.  The lower the pay, the less seriously an employee treats a job,  and the less we can expect in the way of enthusiasm, skills and reliability.  Indeed, many consumers [patients] hire a HHA,  take the time to train him/her, only to have the HHA walk out with no notice. 

So, you should care about making this line of work more attractive.  And what's in it for the HHA besides being better able to pay bills and support her family?  In the case of Consumer-Directed care [CD-PaP], HHAs do so much more than wipe butts [sorry, but I have actually heard ignoramuses refer to this as the job of an HHA].  Depending upon the consumer and his condition, it's a way to learn skills that will look great on a resume, especially for HHAs who  want to go further in healthcare [many HHAs go on to become Certified Nursing Assistants {CNAs], Licensed Practical Nurses [LPNs] and even RNs and get jobs in hospitals or agencies].  For instance, my aides know how to transfer me,  and use a Hoyer Lift and ventilator.   They also do wound care and other nursing functions.  In my case, they have become very  knowledgeable about neuro-muscular diseases, feeding tubes and physical therap- and range-of-motion exercises.

Okay, so let's say we agree that HHAs must be paid more.  Well, the powers-that-be do not agree.  They need to be convinced to fund Medicaid and Medicare to pay this increase.  Unless you have been living under a rock, you know that here in the United States we have a new administration, which includes a new president, a majority Republican Congress, and very conservative cabinet members, many of whom are very wealthy [billionaires, even].  Without getting too political, the present government and many legislators are not fans of increased funding to pay for community care.  They think $11/hour is a fair wage for someone entrusted with the health and safety of YOUR loved one.  Let me tell you in more detail than above, what happens with a worker who doesn't earn enough money to pay rent and support herself and her family : they have less respect for the job,  may leave with no notice [often after investing a lot of time and patience training],  AND may find it necessary to work another [or multiple other] jobs.  The latter situation can endanger a patient - the HHA may be so fatigued s/he falls asleep on the job and therefore loses sight of a child or older patient with dementia, causing wandering -- or worse.  A fatigued aide might even lose grip on a patient during a transfer and cause a fall.  Inattention or lack of focus can be dangerous.   Also, at such a low salary,  consumers have to settle for a less-desirable and lower-qualified aide pool.  Instead of getting an aide who enjoys the work and chooses to do it and learn skills, we risk getting someone who can't get anything better, and might resent what they look at as desperation. I am very lucky to have aides who have been working with me anywhere from 9-11 years, and are eager to learn any skills necessary.  I am also lucky to have an assembly member and state senator who are advocates of community care and a living wage for home-care workers.  When I meet with them later this month, I will be preaching to the choir.

In order for a working person to feel valued, he must be compensated appropriately.    Furthermore, we must fund community care so people can stay in their homes and in the communities where they feel comfortable with their neighbors, and where many have resided for decades.  In the coming years, we need funding for an increasing need for dedicated and contented home health care workers.  This is one of those things I hope you will never need, but you may one day.  Even some of the highest salaries cannot support decent home health care out-of-pocket, especially 24/7.  I was told when I first received my diagnosis and was discussing with an acquaintance my concern about a future need for round-the-clock care:  "Just get some illegal alien who will be happy for $200 a month and a pull-out couch to sleep on"........I found out this was not a good idea. 

New Format: New Subtitles, a Synopsis of the Last Few Weeks

I toyed with the idea of separate blogs, and that may be what ends up happening, but for now, I will introduce new features:

FROM THE BOOKSHELF -- where I talk about new and not-so-new inspiring or informative books that would be of interest to anyone who cares about health issues and/or living mindfully.  If you have a relevant book you would like me to talk about, or even want to write a guest post about, let me know in comments or via email

ON THE SCREEN-- I have a serious TV habit and I love to talk about what I'm watching [which is often catch-up binge-watching].  Contact me if you have a show you would like me to check out [or would like to guest-blog about].  From time to time, I will discuss movies too.

GLOBAL GASTRONOMY/FOOD ANTHROPOLOGY -- My goal is to eat cuisine of every country on earth.  I am lucky to live in New York and doubly lucky to live in Queens, the most diverse borough of New York City.  And if I can't get out to eat it, I can always order it online.  I am also lucky to have a few friends who are more than willing to accompany me on my culinary trip around the world.  So far, we have done Brazilian, Somalian and Ethiopian, and I will soon post about those experiences.  If I were to give advice to my younger self, it would be this: "Do what you love and follow your passion, and you will figure out how to make a living at it".  And there was someone who also said something to the effect of "Do what you love and you will never work a day in your life".  I have been lucky to have worked in the airline industry for 20 years and been able to travel to many different countries including Israel, Japan, Mexico and even South Africa.  When I was a junior at SUNY Stony Brook [now called Stony Brook University], I needed to declare a major and I wanted to major in Anthropology; my favorite classes were Anthropoly 101 and Linguistics.  But 1974, the prevailing question was always "How are you going to make a living?" and I couldn't come up with an answer other than "teach in a college", which elicited a response of "Oh, you're going to be a perpetual student" from my parents.  Academia was viewed by the grownups in my world as a way to stay in school permanently [yeah, so?] and a way never to "grow up".  So I majored in French because everybody saw me as a future United Nations translator/interpretor [did they even know how hard that is for an American girl who couldn't afford to move to Paris for at least a few years?].  Then again, I could always do what every Jewish girl was expected to do -- teach in a nice high school ["great job for a wife and mom -- you're off when the kids are off"]  Anyway, there went the passion.  I still haveb my passion for language, culture and food.  And my taste buds will travel around the wotld and to different regions within countries.

DISABILITY ISSUES -- As a person with ALS/Lou Gehrig's Disease/ Motor Neuron Disease, it's hard to escape the fact that I am a member of a much-larger community of people with disabilities [PWDs], a minority that still has a long way to go. even 20+ years after the American with Disabilities Act [ADA] was passed in Congress.

ALS/MND NEWS  :Anything related to ALS -- fundraising, research, events, clinical trials, etc.

HEALTHY AND MINDFUL LIVING:  There is no cure or effective treatment -- yet.  It's typical, upon receiving a grim diagnosis of any kind [especially a terminal disease], to give up and just neglect everything you might have been doing to live longer and healthier.  But take it from one who's been there, done that and done a lot of damage.  I was somehow led to believe  that there was nothing I could do to improve my situation, and that I was in danger of losing a ton of weight; and so I interpreted that to mean I should enjoy the limited time I had left and indulge.  So I ate everything I loved -- fatty foods, sweets, fast food. Much to my surprise,  I gained a ton of weight and with it hypertension, high cholesterol, hypothyroidism [aka slow thyroid] and even pre-diabetes and two hospitalizations for blood clots.  I needed to get back on a healthy eating track and I will share all I have learned from a lot of reaearch on nutrition.  I will also review food products.

PRODUCTS AND HACKS FOR DISABLED LIVING:  Anything I come across that can make life better for me, PWDa and even Seniors

MY WORLD:  Finally, I will continue to share what's going on in my world of -- so far -- 13 years living with ALS/Lou Gehrig's/ MND.  I can only tell what I experience. Opinions expressed here are my own and only my own.  What works for me might not work for you; conversely what didn't work for me, might just work for you.  Everybody's experience is different, even within the ALS/MND community.  And because we are talking globally these days, mine is the American experience and I am passionate about knowing what is happening with everyone especially PWDs in all parts of the world.

One last thing:  ads are welcome and also guest blog posts......ads will be paid or I am open to barter.......just contact me at my email

 

Disability Activist Ed Roberts on "60 Minutes" with Harry Reasoner

This is a video that was shown on the CBS show "Sixty Minutes" about Ed Roberts. He was stricken with polio in 1953, right before the vaccine was discovered.  He got a degree, fell in love, got married and fathered a son -- all while being paralyzed from the neck down, and dependent upon a ventilator to breathe and to stay alive!!  Furthermore, he started a movement for PWDs to live in their communities and stay out of institutions.  And -- most amazingly -- he tried for years to end his life!! After the last of his failed suicide attempts, he decided to live and to live a purposeful life.  I for one, am most grateful he decided to stop trying to kill himself and make a difference; my life would be so totally different if Ed Roberts had been allowed to die.  I am determined to live a life of purpose and this story humbles me because I am so much more able-bodied than Ed Roberts and I have not done a fraction of what this man has done.  He has been disabled almost his whole life and I was able-bodied for a good part of my adult life.  It is worth 16 minutes of your 1440-minute day -- 1/90th of your day to watch this. This is truly a hero and an inspiration!!  Give me your comments and let me know if this video changes your thinking.  Thanks to NYC disability activist Lawrence Carter-Long for sharing this video.