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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Why the TV Show "Speechless" is Important to Me and Should Be for Everyone -- Disabled or Not

WHAT I'M WATCHING:    "SPEECHLESS"  [ABC TV NETWORK]

People With Disabilities (PWDs) are the last marginalized people to gain respect.  We have made so many inroads in the developed, industrialized world with race, religion and sexual orientation and identification.  Many people and legislators still wish to lock us up in institutions and keep us out of sight .  Although there has been great progress in enabling PWDs to live in the community, we still have a long way to go.  If I didn't navigate the system the way I did, and push for transition to a self-directed care model [Concepts of Independence in my case], I would otherwise be living in an institution or getting care through an agency.  An agency controls everything -- when and where you can go-- and if you can go -- outside the home, and even whom they send to care for you [in some cases, with very little input from PWD or family]

"Speechless" is so important to me because it not only features an actor who really has a disability and shows that "speechless" is not synonymous with "infantile". The show also deals with the concept of "inclusion".  When I became disabled in January, 2004, I was shut out of activities by many able-bodied people, sometimes by inaccessibility of venues or lack of accessible transportation, but often by well-meaning "friends" who thought I would be uncomfortable around "normal" people.  Sometimes I am invited, only to be invisible-- left out of the conversation or even ignored or stuck in a corner by myself.  This show should be watched by everyone, especially by misguided people who have told me "Maybe there's a group or club you can join that's more for people 'like you' " [this was actually said to me more than once].  Get out of your comfort zone -- watch it; it's actually funny.  I give you permission to laugh.

"Speechless" features a family with an adolescent with Cerebral Palsy. There's a mouthy mom-- Maya Dimeo, who is a flawless advocate and played brilliantly by Minnie Driver.  She is the perfect advocate for JJ, even pointing out when well-meaning gestures are insulting.  In the first episode, she asks for a ramp so JJ can get into his school and she goes on a rant when she is led to a ramp which also doubles as a trash conduit.  I can relate to this, since often when I ask for a ramp, I am led to a rear door alongside trash and service entrances.  In my own residential building, I haven't seen my lobby in at least 10 years; I have to enter and exit through the basement.  Especially in older buildings that have been retrofitted, we are segregated.

I love when my caregivers and friends speak up for me in the face of injustice.  Despite my inability to express myself clearly at the moment of impact, I have learned the fine art of patience and diplomacy in protesting after-the-fact.  I write letters and emails, and make relay calls.  I used to shoot off my mouth at the moment of the injustice.  That proved to be ineffective at times and even counter-productive, since tempers are often high at that minute and I tended to say harsh things I sometimes later regretted.  Also, sometimes the person you yell at, isn't the one who can make a change and sometimes is a lower-level worker who isn't very educated in discussing protests in a civil way, especially in the middle of his workday.  And even more likely, as in the recent case of a friend arguing with a paratransit driver, you find yourself in debate with a recent immigrant whose English language skills are not the best and/or can't or won't take direction from a woman.  

But in "Speechless", Minnie Driver is a funny angry person and shows how we can laugh at a life that can also be referred to as a tragedy.

An open letter to my [Former] Primary Care Physician

Dear Dr. R,

I think you may notice very soon (if you haven't already) that I have stopped coming to your practice. Or maybe you will never notice and/or won't care (or maybe will even be relieved to not have to handle my objections anymore). Youbs

However, I feel compelled to tell you why I had to change doctors for the second time in three years. Somehow I think you won't really care, although nowadays you really should.  Let me tell you why you should care about your patients and what they think.  First, there are so many doctors in our neighborhood.  We don't have to put up with substandard care in Central Queens, because there are at least 1,000 doctors within a 3-mile radius, from which we can choose.  Secondly, in this era of social media, it's easy to let everyone know of our experiences.  As a matter of fact, recently on Facebook, a woman in our neighborhood contacted me and asked for a general practitioner recommendation.  I promptly told her to stay away from you, at which time she informed me that she had just made an appointment with your practice and when she heard my feedback, cancelled the appointment with you and booked one with another practitioner on your premises.

Let me tell you the reasons I have changed doctors.  I had a very nice general doctor at the other end of Queens Blvd but since she had moved from spacious quarters at 97-77 Queens Blvd, which she shared with another doctor, she was less able to provide me with quality care.  Her exam rooms in her new location were minuscule and there was no room for my wheelchair. She came up with a solution to give me the last appointment on Wednesday and I had to wait for all the other patients to leave so she could examine me in her waiting area in full view of her [female] office staff.  Despite this being a semi-private arrangement, it still wasn't ideal.  But at least this doctor listened to me.  However, she often rushed me; I sometimes smelled the scent of a pizza which had been dropped off earlier by a pharmaceutical rep, and I could understand her hunger.  As a matter of fact, I had to fast before every appointment for my bloodwork and I felt like going in the back to steal the pizza; thankfully, my wheelchair couldn't fit in the room where the pizza sat. You see, despite her giving me an 11:45 appointment, she was always behind-schedule and by the time she got to me, it was usually about 2:00pm.  I stuck with her until she got sloppy with callbacks and her staff member told me she would call right back one afternoon, and I learned later that she had already left for the day and didn't receive my message about a medicine refill until three days later when she returned from her weekend.  I hate liars, so decided it was time to switch.

I went from the frying pan into the fire.  Even though your office is right around the corner from my apartment, I was worse off with your practice.  First, I quickly learned of  your unavailability between appointments, even to pharmacists.  My pharmacist -- whom I have been using for 30 years -- complains that it is nearly impossible for him to call for a refill on a prescription.  Once, he was so frustrated that he told me he had given up.  So I sent my aide in person; she waited nearly an hour in your waiting area before she could even get the message to you.  And then you told her I had to make an appointment to come see you in order to get the refill. WHAT?? I had just seen you three weeks before so why did I have to see you again just to get a refill?  You never return phone calls, and this concerns me.  How could I have any kind of relationship with a doctor who doesn't return phone calls?

I happen to be a wheelchair user and can barely fit into your exam rooms.  Your "practice-within-a-practice" used to be a furniture store.  The practice owner took a large open space and built exam rooms barely big enough for a doctor and her patient, let alone a wheelchair.  For an establishment which opened post-ADA [American with Disabilities Act of 1990], this is unacceptable.

What is even more unacceptable is the fact that you insisted on GIVING ME A BREAST EXAM IN THE HALLWAY!!  You insisted that "nobody is looking" and was extremely annoyed when I expressed my displeasure.  And, speaking of breasts, why did it enrage you when I asked you for a prescription that I could use for a mammogram at Columbia Presbyterian Medical Center?  I have been going there for the last 20 years, and they are the only facility with a WHEELCHAIR-ACCESSIBLE MAMMOGRAPHY MACHINE !!  And yet, when you handed me a prescription for a local facility and I said I wanted to go to Columbia, you were positively exasperated.  Did I ruin a kickback that you receive from the local facility?  If so, I am sorry because I know doctors don't make as much money as they used to. Oh, and I did have that mammogram appointment in March but when I sent my aide to your office for the prescription, you refused to give it to her unless I came in.  Funny how you told me after my last appointment "see that you don't come back before having your mammogram." and now you won't give me the prescription until I come in.  What???!!!

But, my own exasperation reached a peak three months ago during my last visit.  I waited TWO AND A HALF HOURS in the waiting area until you called me.  Then, not one gesture of apology passed your lips, for having an 11:30 appointment and not seeing you until 2pm.  Might I remind you that I was fasting because I was having blood work?  By the time you examined me, I felt like I was going to faint, and you asked me why I couldn't breathe strongly enough when you examined my lungs.  How many times have I reminded you that fatigue is a hallmark of ALS, as well as weak breathing.? Once again, you told me I should be blowing up balloons for exercise.  Blow up balloons?  You must be dreaming.

Anyway, so after you make me wait two-and-a-half hours and I hand you two pages of carefully-typed information I need you to know -- like request for the mammogram prescription and explanation of why I need to go to Columbia, and full reports on every medical appointment I have had since I last saw you -- you rudely put it in my file without reading it and asked my aide to come into the room.  Next, you told the aide "I need you to talk to me because I don't have time for her [meaning me] to type out her answers on the machine".  I was floored;  I had just waited two-and-a-half hours and not once did you apologize for the delay.  And now you insist on speaking to my aide, who only repeated the questions you asked and I answered.  When my aide noticed that most of your questions were answered on the paper I gave you and pointed that out, once again you were exasperated. That was the last straw.  Such lack of respect for a patient is unacceptable.  I may be in a wheelchair and talk with an assistive device, but it is your job to deal directly with me.  Two-and-a-half hours is way too long for a patient to wait, and don't think I didn't notice that Russian-speaking patients who had appointments later than I did, were taken before me.

I gave you every benefit of every doubt, but you proved to be disrespectful, arrogant and a proponent of "my-way-or-the-highway" doctoring of 50 years ago.  You are not God and I don't have to put up with your bad behavior in this day and age of choice.  I have chosen another doctor who -- by the way -- apologized for making me wait 30 minutes in her waiting room.  I have an email which I can use to ask her questions between appointments, and request prescription refills.  I have already done so, and my prescription was at the pharmacy a few minutes later.  I am very happy with my new doctor and will not hesitate to recommend her;  I will continue to dissuade people from consulting with you.

Sincerely,
Fern Ellen Cohen

Will I mail this to the doctor?  Probably not.  Because she will probably just stick it in my file without reading it, like she does with everything else I have given her.  She'll probably just think I died, or went to a nursing home.  Or maybe never notice that I'm gone, or maybe even heave a sigh fo relief that she doesn't have to deal with "the lady who talks with the computer".  Either way, she and I are done.

Sex and the Disabled Woman, Back from Nutrition Studies, Missing the Ocean

I cannot believe how long it has been since I have updated, but then again, maybe I can believe it.  I have just completed a certificate in Plant-based Nutrition in a course through e-Cornell, led by the renowned T. Colin Campbell and with lectures by other Cornell professors.  It reinforced what I have been learning for the past year -- that a whole-foods, plant-based diet is the healthiest way to eat and even the best for the environment.  My original bunny-friend/mentor, led me to this opportunity.  I am happy to say that this course is a graduate level class and my fellow classmates largely consisted of professionals in the health-care field -- including doctors, nurses, nutritionists, dieticians and other professionals taking the course for continuing education credit.  Although the course was totally online andcould be done at my own pace and time, each of the three courses had to be done within a r-week period.  So I did it, which proved to me that I can be focused and driven where I needed.

But I could only have dedicated myself to this, by neglecting other things, like email and gams online, and even television watching.  And now, I am unsubscribing from a lot of mailing lists, especially a whole lot of nutrition websites that I can see now, were superfluous.  Because after taking the course, I can see that a whole-food, plant-based diet is the way to go for the ultimate in immunity and the proper working of my body.  I am hoping to be able to get off some of my medications.  I am not going to resist physical therapy when I go to the MDA clinic next.  It can serve as exercise, and help me keep the weight down.  Oh, and a whole-food plant-based diet also helps keep down the weight.  

Now that we're finally in summer, I am getting outside a little each day to sit in the sun in front of the building.  My vitamin D level was low at my last doctor's visit, and I have to take supplements.  But it is my understanding that sitting in the sun without sunscreen for 20-30 minutes, you store enough vitamin D for the winter. This will be about the fifth summer that I will not see a beach or the ocean, and I sorely miss it.  My family is nervous about having me come to their beach club without an aide, and the aides won't go.  My family is frightened that "something will happen", even though I don't know what that something is.  However, they would not feel comfortable taking me to a bathroom, so I guess that takes care of that,  although I admire their honesty, and they say what others won't.  Despite the Americans with Disabilities Act, most public places misunderstand what the words "wheelchair-accessible" mean, and that beach club is no exception.  You cannot put a grab bar next to the toilet and call it "accessible".

I wonder about sex.  Recently, two disabled people I know, who are both more disabled than I am, mentioned being in relationships.  These relationships were entered into after being disabled.  So what does this mean?  Without going TMI, I still have desire and feelings  and could still use my hands, mouth and other elements of intimacy.  Of course, who would be attracted to me?  Good questions,  but I would love to have intimacy again, especially since I don't have to worry about getting pregnant anymore, and I am less worried about the morality of having sex with someone who is not committing to me.  All it would take is an understanding partner who could get me in the right position and be patient, because it's been a while.  I also wasted too much time from the mid 90s until my diagnosis, involved with a couple of men who were emotionally [and physically] unavailable, but that's for another blog update.  There are quadriplegics, for God's sake, who are involved with able-bodied partners.  How do they do it?  Maybe that's my next reading assignment.

I'll stop here, because I want to get this entry published.  But my ten-year longevity brings new questions.  I have been blessed, so how can I use this blessing for the greater good and how can I make my own life more meaningful and form solid relationships, as other connections move on and put more distance between us.  How can I let go of what's no longer working and embrace new situations that work better?

Lifetime Disability vs. Acquired Disability

I had a colleague, during my teaching career, who was an African-American lady about ten years younger than I.  We went to lunch one day and she stressed the importance of teaching her son -- then two -- about the civil rights movement, which even she was too young to have lived through, much less remember.  She said her mom -- who was also an educator -- made it her business to teach Oni and her sister about "the struggles" so she would always appreciate that the opportunities she enjoyed, were not easily come by.  As a child, I learned about the Holocaust, which was still fresh in everybody's minds, especially since I was born only ten years after the end of World War II and the liberation of the Nazi concentration camps.  There were people in my neighborhood, many of whom were classmates' parents, who had numbers on their forearms from the "camps".

What does this have to do with disabilities? A lot. When I just hung out in groups of ALS patients, we all had one thing in common: the same disease.  There are different forms of ALS, sure.  Some of us lost our speech, while some of us can speak; I still have use of my hands while some patients don't, and have to use eye-gaze machines to talk, and different switches to operate their wheelchairs - like head controls or even eye controls.  I am blessed with a slow progression, while other patients' symptoms progress at a faster rate.  But we all have one fundamental thing in common: we had a life before ALS.  Although we were diagnosed at different ages, and an increasing number of young people as young as 18-30 are being diagnosed, we all had able-bodied "normal" childhoods,  and most of us had several years of adulthood as well.  Most of us dated, attended our proms, got married and had children, and had relationships with our families without thinking about how or why.  

But as I mix in the larger disabled community -- most often as a consumer board member of Concepts of Independence -- I become acquainted with people who are disabled in a hundred different ways.  The one difference that stands out is the dichotomy between those of us with acquired disabilities [like Multiple Sclerosis, ALS or SCI -- spinal chord injuries], and those with disabilities that appeared at birth [like Cerebral Palsy] or in very early childhood [various forms of Muscular Dystrophy and Polio aka Infantile Paralysis].  Some polio survivors were in iron lungs before portable ventilators were invented, and many child polio victims were abandoned by their families and left in institutions.

I met a very remarkable woman at a fundraiser last September.  She came with her son who is now in his mid-30s and was diagnosed with a form of Muscular Dystrophy at age three, when his pediatrician noticed he was clumsy and not coordinated the way he should have been at his age.  Today, this man is an attorney who works for city government, but not without a mom who fought for his rights every step of the way in a pre-ADA [Americans with Disabilities Act] world.  She would not let his elementary school "dump" him in a special education class full of students with mental disabilities and mental retardation.  He became the first student in New York City to be "mainstreamed".  He graduated college and law school.  This mother says "I only did what any mother would have done".  Newsflash: I don't think my own mother would have had the strength to be the trailblazer this mother was.  And even today, my dad says all the time to me  "You can't [do that]".

Anyway, as I said before, this woman is remarkable.  But she commented to me at one point in our conversation:  "You will never know what it's like to be a disabled child.  You are lucky to have had a life before disability".  I agree.  I will never know what it's like to be bussed to a school over an hour away from home,  in a minibus full of kids in wheelchairs who have to be dropped off in different neighborhoods,  because there is only one handicap-accessible school in a whole borough.  Then again, disabled children today will never know that, either.  The post-ADA world is much better in the way of education.  Therein lies the comparison to my African-American colleague's son.  Children today with disabilities haven't lived through "the struggles" of their predecessors. Neither have I.  I never had to deal with as many businesses and buildings that I couldn't enter because of inaccessibility; nor have I had the experience of being stuck on my block because there were no "curb cuts" or even forcibly homebound because I could not get out of my building.

Nor will I ever know what it's like to be shunned by other children, whose mommies pull them away in the playground, as if disabilities were contagious.  Not to mention that able-bodied kids are bullied every minute if they are "different" in other ways. Able-bodied children have troubles too, just different ones.  And at the last meeting I attended at Concepts, some of my fellow board members were commenting about the new director of the Mayor's Office for People with Disabilities,  saying that he wouldn't be as effective as his predecessor, because the predecessor had been blind from birth and the new man in the job, has not been disabled his whole life.  The man sitting next to me [who is disabled from birth]  then said "There's a big difference between someone who has been disabled his whole life, and someone who hasn't" and the woman sitting next to him [also disabled all her life]  nodded her head.  

Is it fair to compare situations like this?  Sometimes.  Like when I watch those infomercials from St. Jude's Children's Hospital where Marlo Thomas introduces us to babies and little children going through cancer treatments,  I think "There's nothing worse than this, especially if they die.  There is no loss worse than watching a child suffering and then burying a child".  And yes, having a disabled child is the toughest, especially before ADA.  It doesn't mean I can't be effective as a spokesperson.  And should it have been a criterion when choosing the MOPD director, that the successful candidate be disabled from birth or childhood,  in order to empathize?  

So Many Issues; So Little Time

Sometimes there is so much going on, I avoid a blog entry because I don't know what to talk about first.

First off, ALSA of Greater NY was wonderful enough to give us Walk to D'Feet fundraisers tickets to the Brooklyn Cyclones game against the Staten Island Yankees last Friday night. I was really excited about this for three reasons: 1) I love baseball games, and this will probably be the only one I will attend all summer.  2) The Brooklyn Cyclones, which is a minor league team, is the "Farm team" for the New York Mets. 3) most importantly, The MCU Park, where the Cyclones play, is in Coney Island an area I haven't visited in many years, and a place that brings me back in time.  Both my mother and father grew up and met there.  As a child, we used to go there to visit my paternal grandparents and have numerous outings on Coney Island beach with extended family -- aunts, uncles, and cousins, as well as grandparents.  Coney Island is legendary, and the Cyclone, for which the team is named, is one of the most famous in the world.
As a child, we would go up on the roof of the Projects where I grew up, and watch the fireworks in the summer from Coney Island. And, ironically, our view from our kitchen window in the Projects was the best I have ever had from anywhere I have ever lived.  We were able to see the iconic Parachute Jump and Cyclone Roller Coaster all the time.  And, as an added bonus, on a clear day, we were able to see beyond that, to the Manhattan Skyline.  It's ironic, because it's the poorest place I have ever lived, but as I am starting to write stories about my childhood, I am quickly realizing that the place everybody always worked so hard to get out of, was really full of rich and happy memories for me.

I had my quarterly appointments at the MDA/ALS clinic and at my Primary Care Physician.  My blood pressure was still too high, so my PCP increased one of my medications and added still another.  I started taking the new medication and then looked it up on the internet the next day and found that it is in the category called "calcium channel blockers".  I have gone that route before and a calcium blocker in the past that I tried had a terrible side-effect-- edema [swelling], and so this new drug had the same effect. I quickly weaned myself off that monster.  My foot once again had become a shapeless blob.  Lesson in all this: doctors are not superhuman beings, and they have very short memories.  There was my doctor prescribing an edema-inducing drug once again for me.  Lesson number 2:  read up on every medication your doctor gives you.  Either read the accompanying paper, which may or may not come with the bottle of pills, or if it's not there, ask the pharmacist for it.  Then, go on the internet.  Remember that the paper that comes with the medicine is coming from the pharmaceutical company.  Although the drug company has to tell you the contraindications and side effects, and what to avoid when taking the drugs, and drug interactions, etc, it may not give the whole picture.  Read what other users have to say about their experiences with the drug.  Also, try to use the same pharmacy for all your drugs, so they can see what drugs you are taking together.  The doctor is often motivated to prescribe a drug by which pharmaceutical rep gives the doctor more attention.  It could be as mundane as which drug rep caters the best lunch for the office.  I'm not kidding about this.  I was a hotel and airline rep once for many years.  I know that my relationships with my travel agencies drove sales.  Pharmaceutical reps work the same way.  Read and question.  You have that right as a patient.  If your doctor thinks he is a deity, you need a new doctor.   


So finally I asked my doctor why I am eating right [which lowered my cholesterol] and staying out of stress as much as possible, so why can't I control this blood pressure.  Isn't it time to check out my arteries and valves?  She agreed and referred me to a cardiologist [whom I researched of course and was comforted to find he is associated with North Shore/Long Island Jewish Hospital in Manhasset and New Hyde Park -- the main hospitals, and very good for cardiology].  I had a battery of tests and the good news is that I have a strong heart and no blockage. Also my HDL cholesterol [the good, protective one] is very high.  So I'm happy all those sardines, tuna, salmon, herring, and other fish I am eating, not to mention the Omega-3 fish oil and flaxseed I am also taking in, are doing some good. The cardiologist was very pleased to hear about all the vegetables and fiber I am eating, and that I am not eating red meat or saturated fat.  So again I asked why my blood pressure is so high - heredity and aging [thanks].  Unfortunately, we whose ancestors come from Asia and the Middle East are prone to high blood pressure, and aging and not being able to move around like I once did, make it hard to keep the weight down.  But I refuse to give up.  

Add to that the conundrum that it is not recommended for ALS patients to lose weight.  Weight loss for an ALS patient means loss of muscle, which is not a good thing.  Moreover, there is the thought that weight loss usually means disease progression, and many neurologists feel that deliberate weight loss can also speed up progression, and therefore death.  Nevertheless I am making it my business to do sit-to-stand exercises [but not to exhaustion] and to keep eating the way I am, and my goal is to be able to cut down, or ideally cut out, my blood pressure medications.  


As to my ALS clinic visit, a new neurology fellow convinced me that increased use of the bi-pap [which is non-invasive ventilation or NIV]  during the day can extend the life of my diaphragm, and thus my own life.  So I started an extra two hours in the morning and an extra hour or two in the evening.  If I ever get my new wheelchair,  which the wheelchair company is ordering again,  this time with pictures of how I am sitting in the old one, the new wheelchair will have a tray for my portable vent.   So I will be able to have the vent with the battery when I go out.  I have been fighting this for a long time because I don't relish the idea of going out in public hooked to a vent. But my involvement with disability advocacy has introduced me to a couple of dynamic polio survivors who joyfully go out in public with their portable vents. They are happy to be alive, not concerned with whether they are "freaking" anyone out.  I hate that my disability makes a lot of people uneasy, and that my loss of speech gives the impression that I am mentally defective and somehow not able to understand what others are saying, but I have to live with peoples' ignorance.  Disabled people have come out of the shadows since the American With Disabilities Act in the last two decades, but not far enough.  As Attorney T K Small [a person with a disability himself, specializing in disabled rights cases] says, in a recent column in "Able", a magazine for PWD's, we as disabled people need to avail ourselves of the rights and accessibility that advocates fought for, for decades.  We need to leave our houses, go out, use public transportation, and visit accessible venues. Only by being in public can able-bodied people see us, get to know us, and see that we can function well.  And, this will alleviate the fear of becoming disabled themselves, if they see us as positive role models.  Eventually we will hear less silly comments like "I give you credit" [for what? living?], "I could never do what you're doing [you would if you had to. what would you do instead? lie in bed?], or my pet peeve -- talking to people with you, about you, in the third person ....eg. "How is she ?" [duh, why not ask ME? I know how I am].

Peace to all!!

Broken Machines Yield Difficult Times For a Person With ALS

I am dependent on machines and devices, which never seem to be functioning all at the same time.  I am very grateful to have these things, because without them, I would not be able to live in my home, and have what little independence I do have.


First, my wheelchair.  There was a time when there existed only manual push chairs, and every day and every minute that I buzz around in my motorized wheelchair -- either inside or outside -- I marvel at the fact that once I am in my wheelchair in the morning, I don't have to ask someone to push me from the desk to the other side of the room.  And I'm sure I would hardly be able to go outside, because I would have to convince someone to push me down the street. And, imagine life before the Americans with Disabilities Act was passed in 1990! An old-timer who has been disabled since the 1960s told me once "Even if we got out of the house, where would we go with a motorized wheelchair?  There were no curb cuts, and almost no businesses were wheelchair accessible"

When I found out my wheelchair initially cost $25,000 I was shocked.  In 2002, I bought a Hyundai Elantra for $12,000, so how could a wheelchair cost the same as two of my cars?  Wheelchairs are custom-made for the user, and refitted periodically for body changes and disease progression.  The modifications recently done on my wheelchair were carefully measured and customized for me.  So, when I had to give up my wheelchair last week for new tires and to repair two important features that had broken since December when I got my wheelchair back from the modifications, I dreaded the process of getting a loaner.  Antoinette from ALSA ordered me a loaner and then I was in the hands of the medical supply shop that runs ALSA's loan closet.  So they brought wheelchair #1, which was beautiful, but the driver who brought it couldn't get the seat-tilt working.  Seat-tilt is important for relieving pressure periodically several times throughout the 14-16 hours I am in the chair.  Moreover, as I slip forward, or when I sit down again after toileting, seat-tilt allows me to use gravity to get my butt back in the cushion.

So later that day, at Antonette's urging, they brought wheelchair #2 -- a beautiful Lexus of wheelchairs.  It has all the features, but it's not mine, and not made for me.  So I can't go in the street any distance with this chair, because the footrest is all wrong and my feet kind of lay there on their sides.  And the side-guides that keep my body straight in my own chair, are not in this chair.  So my body leans to one side and I have to keep leaning to the other side in a conscious effort to correct it.  All this is very uncomfortable, even though it is the best possible alternative.  Picture if cars were custom-made for our bodies and we had to drive a loaner.  So I am praying that I get my own wheelchair back again this week!!

RIP Edward "Ted" Kennedy

This is a few days late, but through all the memorials for Teddy Kennedy over the weekend, I learned what afriend he was to people with disabilities. In fact, there might not be an Americans with Disabilities Act, if not for Senator Kennedy, and he was a driving force behind the Family Leave Act, among others. I have said many times how the ADA has made my life so much easier, and someone who was disabled before 1990, can really see the difference. We have a way to go, because now members of Congress are pushing the envelope toward the concept of "visitability", which is the concept that everyone's home and every building should be accessible whether or not there is someone who lives or works there, but for the benefit of anyone who has to visit. I can't tell you how many times people with disabilities are invited somewhere, only to find out they can't attend due ro the inaccessibility of the venue/home

Anyway please read my tribute to Senator Kennedy by clicking here.

Update May 22, 2009

I feel like I have been running around the past few weeks, but it has been a great few weeks of going places and seeing people.

On Mother's Day, I took my caregiver Ellita to Applebee's for a Mother's Day lunch. And one Friday night Judy visited and we went to Anna's on Queens Blvd. Any opportunity to get out of the house and see people, is so welcome! I am grateful for the fun I had this spring. The three Saturdays in Valerie's van, two to the beach, were glorious!

On May 11, I was invited to a research reception hosted by MDA-ALS Division and Wings Over Wall Streetat Chelsea Pier. One of the best parts was utilizing the hour before the event started to explore the pier, which I hadn't visited in years! But I couldn't believe how nice this reception was, and how everybody from MDA and Wings treated me with such attention and caring. I felt so comfortable.

I also attended my annual shareholders meeting at my co-op. I had to laugh when the management company talked only to my aide -- "tell her to sign here", "ask her...etc etc...." the ignorance of people toward the disabled still makes me frustrated, but I don't express myself too much anymore because a) it's an exhausting waste of my precious energy, b) they never get it anyway, and c) when I try to to talk it makes it worse because it scares them, they think I'm mentally challenged, or they think I'm crazy, or all of the above, and if I write on my board, it takes too long. I rely on the aide or friend who is with me, to say "She can hear you; please speak to her", and I am so grateful when that happens. Caregivers and friends of people with disabilities have to advocate for those who can't do it themselves, And the second indignity, if you will, was that my ballot was already signed by the co-op president. "Hahahaha" I said to myself, "I'm here, and I am voting"

May 16 was the 2nd annual Manhattan Walk to D'Feet ALS along Hudson River Park from Charles Street to West 54th Street. Despite rain in the early morning, and dreariness at the beginning of the walk, it turned out to be a beautiful day. I had two new members of Fern's Fighters -- Jessica Aguilar, one of my former AES students, and her friend Jennifer. After the walk, we went to grab a bite. This was a reality check, especially for Jessica and Jennifer. We went to Tenth Avenue between East 56th and East 57th Street. There must have been about 10 reasonably-priced places to have lunch, and I could not get into any of them, because of steps and no ramp. A Boston Market looked promising because they had about 5 steps going up and a wheelchair lift. But, as usual in places with lifts, the lift "wasn't working" , which usually means a staff too lazy to get the key and operate it, or just too lazy to report it broken and get it fixed. The thing with the ADA [Americans With Disabilities Act], is that there is nobody going around to check that retail establishments are complying; they wait until someone puts in a complaint. I may send an email to the corporate website, but I am not about to fight local eateries in a neighborhood that I don't even frequent. So the others went inside to eat, and I waited outside while Ellita got me a takeout meal for later. But I kept thinking of a scene from a movie that I saw recently that took place in the South in the 1930s, where a singer was touring, and couldn't go into certain restaurants that wouldn't serve African-Americans. So his white band members went in to eat and brought food out to him. Hmmm, do you see a parallel here?

One disappointment was that, for the first time in four years, I could not join the Ride for Life, because they did not come within the five boroughs this year. They stayed in Long Island, primarily in Suffolk County. My plans to meet up with them in Nassau County by an Access-a-Ride and Nassau Able-Ride had to be scrapped because of an uncertain ending point and time. People with wheelchair vans don't know how lucky they are. Those of us who rely on public paratransit, though we are fortunate to have it in this area, have to give times and places for pickup; we can't be spontaneous at all.

My quarterly visit to the ALS Clinic at Beth Israel was positive. I am pretty stable -- legs pretty useless, but arms even stronger since physical therapy. So the doctor wants me to continue PT, since it is benefiting me. I have to get my braces adjusted because they are cutting into my feet and killing me. And the shoes I wear with the braces are very stretched out, adding to the problem. So off I go to buy another pair of grossly overpriced shoes. Oh well.......