Tuesday, December 4, 2012

Thanksgiving, Manual Broken Transfer Chair

Went to my first endocrinologist appointment the day before Thanksgiving.  He is a cold, Russian local doctor in Rego Park, but he seems to know what he's doing.  My thyroid sonogram revealed a small nodule and I needed to see an endocrinologist.  I saw online that Weill-Cornell has a wonderful endocrinology department so I emailed my neurologist, Dr. Shtilbans and asked him if I should get myself in there.  He said it wasn't worth traveling over the river; he suggested I see the local doctor and if it turned out to be something complicated, then we could see.  And there was a side benefit:  my aide and I walked [well I rolled], and I got to be out in the neighborhood and pick up a bottle of wine to bring to Thanksgiving.  I don't get to roll around the neighborhood too much, because the aides who work during the day don't like to take me out for some reason.  They will do what errands I need, but they prefer to do them alone.  So, visits to local doctors are great excuses to get me out locally and I can see what's doing in the 'hood, aside from my lunches with Judy and Louise.  So, getting back to my thyroid, the doctor feels a slight goiter, which he is trying to shrink with medication [25mcg of Levothyroxine].  It's kind of a pain in the butt how I have to take it -- first thing in the morning with water and then I have to wait 30 minutes before I eat breakfast.  This is a pain with my aides' schedules, because the night aide gets me up at 6:00 am and can't give me breakfast until she has to leave and then the day aide has to clean the breakfast dish.  But oh well -- change is good.  Later on in December, I have an appointment with a local nephrologist [kidney specialist] because there could be a connection between low potassium and kidney failure -- either low potassium can mean kidney failure or low potassium can be because of kidney failure....ugh, I don't want to make myself crazy.  Dialysis is something I don't want in my future.

Thanksgiving was nice.  I went to my sister's house and my aide agreed to come along. The food was great and the company was fun.  There was one glitch, however, that caused me a lot of anguish later and I didn't see it coming.  I have had a manual transfer wheelchair on loan from the ALS Association for about 6 years and both footrests are broken at the point where they attach onto the chair.  So I went to Thanksgiving with no footrests.  This meant that my feet were hanging down for about eight hours, and when I reached home, my legs were weak.  I also didn't sleep all night because my feet were hurting all night and they were freezing cold.  And, as usual, when I have to sit in the manual transfer chair for so many hours, my whole body hurts from not having a headrest and the wheelchair being so uncomfortable.  It is only for short transfers and not for sitting for long hours.  But, since my sister's home is not the least bit accessible and I have to ride in my brother-in-law's car to get there, my custom-fitted motorized wheelchair is not an option.

And now there is the question of the loaner manual chair's repair.  The loan agreement from ALSA states that I have to keep it in good working order and return the equipment when I am done in good condition.  That means I am responsible for the repair.  There is a place nearby called Gem Surgical Supplies but I have to see about pick up and delivery.  Otherwise, I have to wait until Louise rents her zipcar at the end of the month to drop it off, and then wait until she takes a zipcar again several weeks later to pick it up.  In the meantime, I pray that my motorized wheelchair doesn't break down, because then I would have no backup manual wheelchair.  As a matter of fact, I have been looking at manual transfer chairs for me to purchase and I can get a simple one for about $600, or a much better one with a headrest, and that tilts back, for about $1400.  Then I think: hmmm, I go to the family maybe once [at most twice] a year-- in fact, for 2011, I didn't go at all.  We need the manual chair when I do the Long Island Walk for ALS [which I didn't even do this year due to lack of team interest] and for New Years Eve when I go to Nancy's house in Great Neck [provided Louise can go and I have an aide who cooperates with transfers], so is this a smart investment?

I'll tell you what a smart investment is: new shoes.  At my sister's house, everyone was teasing me about my "Frankenstein shoes", but Medicare now only pays for custom shoes for diabetics [which I don't have -- yet] and they will cost $800-1000 out-of-pocket.  I still have to calculate my NYSARC trust account to see if I can submit the bill, and hope the NYSARC trustees approve the expense. Anyway, not only are my Frankenstein shoes falling apart, but they were made for the old braces and don't really fit these new braces.  I had to stop myself from saying to everyone at Thanksgiving "Would you people like to donate to my shoe fund?"  Ironically, I think it's items like my funky shoes that embarrass people from being seen with me.

Monday, November 12, 2012

Post Hurricane Sandy -- Reflections on the "American Dream" and Post-War Building Boom

Well, I have to say [blushingly] that I have been incredibly fortunate through these two atorms -- Hurricane Sandy and the Nor'easter.  Not only did I never lose power or heat,  but once again I am reminded of the awesome group of aides I have, who managed to work out logistics among themselves to get to me and never leave me without an aide.  It helps that two of my aides are a mother and a daughter who live in the same house, but the third lives in Brooklyn, and has a husband who was able to drive her over.  My fourth aide is spending a month in her home country of India.  She left a few days before the storm, and is coming back a couple of days before Thanksgiving.  I'm sure she is watching the news from India and thankful she managed to get away at the right time.

But, as someone who always volunteered for causes like AIDS, cancer, MS and a lot of other charities, it's very tough for me to sit and watch what is happening and feel so helpless that I can't do more to help.  Compounding this feeling is the fact that my family and friends in Long Island have not had power or heat for almost two weeks, and might not get it back until Thanksgiving.  My sister and her family have a generator, but even people with generators have a hardship getting the gasoline needed to run them.  I am hearing that my 84-year-old father is in his home five minutes away from my sister, also with no power or heat.  I am told [I can't get in touch with him by email or telephone] that he prefers to stay in his own home [which I totally understand].[update: my dad emailed me the afternoon of Sunday, November 11 to say that the power came back on, and that he spent whole days under the covers in bed]    And my good friends and their almost-three-year-old twins are also suffering. I really feel for my hometown of Long Beach, which is destroyed, the Jersey Shore and the Rockaways. As I write this, there are still homes without heat or power almost two weeks after the storm.  Some homes have generators but there is a shortage of gasoline to run the generators, and gas rationing is in effect in New York State.

A lot of Long Island communities -- especially those near the coastline -- were built on landfill or marshland, and I think the weak foundations just gave way in combination with the low elevation.  This includes a lot of NYCHA housing projects, one of which I spent my childhood in.  They were built to house World War II veterans like my dad, and their young families.  This storm and the destruction it wrought, had me thinking a lot about this "American Dream" we have all been chasing since after the second world war, the dream of marriage, family, and eventually home ownership.  The communities which sprung up on Long Island were in response to that dream and the supply couldn't keep up with the demand, and so the older established communities had to give way to communities built on landfill and marshland and -- in some cases -- on top of dangerous chemical waste, leading to the epidemic of cancer cases in places like Nassau County.  This all makes me want to read more about the history of Long Island and Staten Island.  I remember when we used to come out from Brooklyn to go to Nathan's in Oceanside when I was a child, and there was a woodsy forest behind Nathan's.  And where I am living in Rego Park, apartment houses were built on farmland, although Flushing Meadows Corona Park was built on a big garbage dump, which you can see in the movie "The Great Gatsby".  Kind of creepy the way that Robert Moses oversaw the construction of all the highways around my neighborhood just to bring people to the 1939-40  New York Worlds Fair, which took place on a garbage dump.

Anyway, I have to go see an endocrinologist about the nodule on my thyroid.  And now, I am scared shitless because Brooke Burke Charvet, the hostess of "Dancing with the Stars" also had a nodule on her thyroid and was diagnosed with thyroid cancer and has to have a thyroidectomy.  I am keeping my fingers crossed and will call the doctor I was referred to, first thing tomorrow.....ugh.

Wednesday, October 24, 2012

Pete, Rudy and Vinny Are My Angels ; Kudos to John Liu

Kudos to NYC Comptroller John Liu

NEW YORK, NY - City Comptroller John C. Liu stated the following on the approval of the "Taxi of Tomorrow":

"The failure to make the entire fleet wheelchair-accessible is a wrong-headed decision that should concern all New Yorkers, not just the current 60,000 wheelchair-users ihould have beenour City. People can become disabled at any point in their life. Perhaps if the Mayor required the use of a wheelchair he would see this issue differently."
Background: Comptroller Liu's testimony to the Taxi and Limousine Commission: http://comptroller.nyc.gov/press/2012_releases/pr12-09-100.shtm.

When the ALS clinic staff at Cornell met me at the door at my appointment on September 14, they had already heard from me for months about my wheelchair.  The rep of the vendor kept promising me that he was "working on it" and very soon, all my wheelchair problems would be over.  At my June appointment at the ALS clinic, the rep wasn't present and I learned he had left the company.  It all made sense.  When some people know they will be leaving a job, they often leave loose ends hanging.  I was assured that the company had hired someone else and I figured it would take time for this new guy to clean up the mess left by the old guy.  So when I came for my next appointment on September 14, Jenn from MDA informed me that the following Monday [September 17], I would have visitors to my apartment -- Pete, the new vendor rep, a man from the wheelchair manufacturer, and Pete's boss.  In the meantime, Pete was in the clinic that afternoon and he spent a lot of time with me, the occupational therapist, the physical therapist, and my wheelchair.  Together we all figured out what the issues were.

 So the three men came on Monday and promised they would get the wheelchair to a more ideal vehicle for my needs, with a single footrest that lifts up, rather than two single footrests that were constantly breaking and came out to the side like wings for me to stand.   They brou ght the wrong footrest.  So they had to take the wheelchair away to their shop overnight and I had to use the manual transfer chair.  This means that I couldn't move on my own and there is no headrest, tilt or recline.  They promised to get the wheelchair back to me by 10:00 am.  Of course the next moning came and went.  With every passing hour in that manual transfzed er chair, I was uncomfortably waiting for the chair to come.  It finally came with a technician at 2:30.  I was not the happiest camper, but so relieved to have it.  One thing they did as a result of my joking around when they asked before they took away the wheelchair, "Now before we leave, is there anything else we can do?" and I said "If you can make this wheelchair narrower, I would be very happy".  It seemed that the wheelchair itself was no wider than the old one; the armrests were wider and the part that stuck out from the side footrests made the chair wider.  So I was ecstatic when I got the wheelchair back, that it fit into places it hadn't, including under the table that holds Chelsea's bunny cage.

Untill four hours later-- at 6:30pm when I did what I have always been instructed to do  when straightening myself in my wheelchair -- I tilted back and pushed against the footrest.  It so happens that the footrest was in the "up" position, and when I pushed down on the footrest, I heard a click like something breaking.  And I couldn't get the footrest back down.  I could get out of the chair but couldn't transfer anymore.  So back in the manual transfer wheelchair I went.  In the meantime, we found a bolt on the ground, and the bolt had snapped in two. Great!  No footrest again and I can't transfer, so I have to be in the transfer chair.

The vendor couldn't send a technician until Thursday morning.  The tech got he footrest down again so I could transfer and use the motorized wheelchair again, but he told me to fold the footrest up and not use it until they came back to fix the bolt, which shouldn't take long to receive because it was still under warranty.  Apparently the bolt that snapped off is a safety measure to get me to avoid banging the wheelchair and the footrest and thereby damage the wheelchair frame.  Good to know, but too late.  So far I haven't had use of a footrest for a whole month and it is really hard.  The neck pain I have been having, is starting to radiate to my upper back, and my patience is wearing thin.

Thursday, August 23, 2012

Thanks Doc, for freaking me out! and a summer wasted by dangerous air.

First of all, my Medicaid home care is fine.  When I received a notice to come for my fair hearing, I got in touch with some disability activists to see if someone could come with me.  Someone from CIDNY made a phone call to learn that I was renewed in April.  So I didn’t need to go to my fair hearing.  Nice of them to tell me.  What they did tell me in early August is that I have to pay Concepts [technically my home care agency] $207 surplus income.  I pay all of my surplus to the pooled-income trust, and they use it to pay bills, and I wanted to fight this but I am so tired of making relay calls, that I just let it stand, even though that’s more than $200 that can buy me things I need.  Everyone is so busy that I hate to ask people to make these phone calls.  I had the idea to hire an assistant twice a month if I can handle the money.  It would mean four hours twice a month at $12-15 an hour off the books.  Suggestions welcome. It would have to be someone who could make phone calls, clean some things the aides don’t, file papers, and even accompany me to go out sometimes.

Check out this blog   smartasscripple.  But only check it out if you believe that people with disabilities are entitled to complain and be snarky about it.  He has no tolerance for ignorant people and a society that still -- 22 years after the passing of the Americans with Disabilities Act of 1990 -- falls very short of treating people with disabilities like the rest of society.  As for me, I am tired of trying to educate other people who still let people in our presence talk about me as if I were somewhere else.  Recently, my aide and I were in the T-Mobile store.  I still haven’t decided if I want to leave T-Mobile and go for an iPhone, or take an upgrade with T-Mobile and go for an Android phone.  So I was talking to the salesgirl with my iPad and yet she still talked to Indie [my aide].  So Indie said “Talk to HER”.  So she started screaming and I calmly said with my iPad “Please speak in a normal volume.  I am not deaf”.  You cannot govern common sense.  “It’s the right thing to do” doesn’t work. People are very short-sighted, and I don’t remember if I was any better when I was able-bodied. After all, I grew up in a time where we called people “deaf and dumb” and “crippled”.  And so children are best, as well as African-American and Latino people. The last two groups I attribute to more familiarity with illness or disabilities either because they tend to be more in the health care fields, or from poorer neighborhoods where there tend to be more people with disabilities being taken care of by their families.

I still continue to enjoy my largely vegan [except that I eat fish] diet and I feel good.  I like to taste various healthy snacks, and want to start blogging about it.  My favorite thing lately is a sprout powder by Sprout Living.  I mix the powder in with my banana/berry smoothie in the afternoon, and it has gotten things moving.....I now take 2 potassium pills every day because my potassium is still low.  Potassium is very constipating......my sprout powder fills the bill.  I found out it is really easy to sprout things like beans and seeds in my kitchen. I have an aide who works mostly at night and she says she knows how to do this so she will help.  Also, trying out new healthy foods and snacks has become a hobby of mine, so I am going to start another blog about that soon.

I didn’t update in a while because this summer has been very up and down for me, and also my primary care doctor made me crazy in June, saying she heard fluid on my left lung and I should get a chest x-ray, which I did. I figured that maybe I had a touch of pneumonia, although I felt okay, save for a little more sleepiness than usual. So I had the x-ray on a Wednesday and got a message on my voice mail the following Monday to call the next day regarding my chest x-ray [they called before closing-- thanks]  I hate this; if its okay, just say it on the voice mail.  I called the next day and the nurse told me the x-ray came out blurry and they needed me to have a CT scan of my chest.  That’s right ---- shoot me with more radiation so eventually I get cancer.

The next week, I had my appointment at the ALS clinic at Weill-Cornell and discussed this lung thing with the team.  They referred me to a great pulmonologist -- Dr. B.  In the meantime they all said I could decide whether to do the scan or wait to see Dr. B first.  I said oh what the hell, let me get the damn scan so Dr. B will have something to study. Again, I get a voice mail to call back regarding my CT scan.  I call and the nurse tells me there is a “node” on my lung and I now need a CT scan of my abdomen and I begin to freak out.  I ask why the doctor is ordering a CT scan of my abdomen and I get :
“I don’t know. She didn’t tell me”
“Well, what are you trying to rule out?”
“I have no idea”
I told her I want facts and to have the doctor call back.  I’m told that won’t be until tomorrow. Great, I’ll be out tomorrow from about 11 until about 4pm.  She said she would relay that to the doctor, and evidently that slipped by because I came back and there was a voice mail the doctor left at 2:15.  I vowed to not chase her down anymore but she called the next week.  Abdominal CT scan was a mistake; it was supposed to be thyroid sonogram  [close but no cigar-- different test and different body part]

The upshot is there is a “spot” of .8 centimeters, which Dr. B says if we were to go out and take scans of the general public, most people would have spots [on the report, they called it a “nodule”].  Dr. B works with the ALS doctors so he said the “fluid” on the left lung is a result of the weakness on my left side which causes me to lean to the left [the wheelchair company promised six months ago to put something to correct this among other things -- don’t ask!!]

Next chapter is that there is a four centimeter “nodule” on my thyroid and the doctor of course wants a sonogram. I don’t know if I want to do that.  There is no radiation, but there could be an injection of dye.  Can’t she just check my thyroid with a blood test?  Dr. B says this is probably “much ado about nothinng” too.

On June 7th, I finally saw High Line Park with Judy and Louise.   It’s really special but wear a hat on a sunny day because there is no shade.  Then we went to lunch at Chelsea Market, which I used to visit every Sunday with a certain man I wasted three years of my life with, but haven’t visited the place since late 1999.  Boy did it change!!  And the weekend before, my dad took me and my sister’s family to Ben’s Best for my annual birthday dinner

The best surprise came on the last Sunday in June when my cousin Rich Vogel came to town from Portland, Oregon with his two kids [18 and 21], Mitch and Madisen. As luck would have it,  they picked a weekend of over 100-degree weather, which people from the Pacific Northwest never see.  Madisen was sick from the heat and stayed back at the hotel when Rich and Mitch came to Queens and we met at Ben’s Best [again, yes], so they could have real New York Jewish deli food.  We reminisced about growing up together in Oceanside, where Rich learned how to make frog legs working at Nathan’s. And Rich reminded me about the many times I substitute-taught at Oceanside High School and had my sister, Rich’s sister Peggy and Rich and all their friends as students.

Last month, I went to Red Mango twice with Louise.  I have become an addict of Red Mango frozen yogurt.  Also, I went to the Queens Museum of Art with Judy to the “Caribbean: Crossroads of the World” exhibit. This super-hot summer with 100+ degree days was a bust for me.  I love that weather but when you can’t go to a beach and in my case, no further than the front of my building, it’s hard. Except for the two outings mentioned, I never got out in June, July or early August.  Also, work was being done on the exterior of my building and there was dirt and debris flying, as well as scaffolding around the building, so I was stuck inside because the air outside was too dangerous. What a waste!

Saturday, June 2, 2012

Wow, I absolutely don't believe it's been so long since I've posted, but there is so much going on, mostly annoyances of all sizes.  I am still waiting for a date for my "fair hearing", which doesn't guarantee reinstatement into Medicaid.  I'm trying to see if Concepts can help.  But they keep referring me back to the very supervisor at CASA who is covering up for the caseworker.  Nevertheless, I am going to give her a call.  Mind you,  I owe my life to relay calling, but a relay call takes so much longer.  The people at CASA claim they don't have email, but I find that hard to believe; they probably don't want to give out their email addresses because emails are so easy to hold onto and so easy to use in a "he said/she said" situation.  But what they don't realize --shhh -- is when you make a relay call, the transcript of the call can be saved.  Anyway, a well-meaning friend said she thinks "7 On Your Side" or "Shame on You" or some other broadcast ombudsman should be contacted, as well as local political figures. I replied " great idea. Care to make some phone calls for me?"  Of course, everyone tells me how angry they are for me, they're sending prayers,  keeping me in their thoughts, etc. etc. etc. , but of course, none of this means tangible assistance.  I am trying to see if the disability activists can find a "pro bono" attorney. The social worker at the ALS clinic asks what she can do to help, and so I do have people in the field of health care who are expressing concern, so we have to see if this is more than lip service.  I am "cautiously optimistic", but still scared. As for the media, those television people rarely go after government agencies.  They are more into busting the sleazy contractor whom you paid in total up front, did half the work,  and never came back, won't return phone calls, ignores your emails.  My greatest fear is to never get a "fair hearing" date and suddenly be informed my Medicaid and home care have been discontinued.

I had two inexcusable "adventures" with Access-a-Ride last week that exhausted and pissed off my aide and I.  I am immensely grateful that New York City has this service for people with disabilities, both permanent and temporary.  But, few people understand that it's not a door-to-door limo service.  You have to call one or two days in advance of the trip, and you can only do this between 7:00am and 5:00pm.  So if your friend calls at 6:00pm and asks you to go somewhere the next day -- tough luck, Chuck!! Also they give you a time, but you have to give them a 30-minute cushion.  So if they give you a pickup time of 11:30am,  you have to give them until noon before you call the dispatcher to say they're late.  When they pull up, there might be someone else on the bus that they need to drop off, and they may also do other pickups along the way.  These other dropoffs and pickups don't have to be anywhere near you.

So last Monday, we had a 2:30pm pickup from my therapist on West 38th Street, and when no one showed up by 3:00pm, we called.  The dispatcher said that we were marked as no-shows, which had to be a lie, because we were out in front at 2:15pm.  So the dispatcher said we would have a "rescue" driver in 45 minutes. Now, I have a place to sit wherever I go [the advantage of being in a wheelchair], but there is no place to sit in the lobby of that building.  So, already, my aide was standing 45 minutes, and had to look forward to standing another 45.  Except that, by 3:45, still no access-a-ride.  So we called again -- next estimate: 45 minutes more.  That brought us to 4:30.  Now we are up to two hours and 15 minutes my aide would be standing.  She was understandably fuming.  Access-a-Ride pulled up at 4:45 and there were two separate parties already on board, including one lady in a wheelchair. We dropped one group of two up in Harlem -- yes up to Harlem, after picking upp a lady and her aide at Mount Sinai Hospital in lower Harlem.  The patient was in a wheelchair and yelled that she wanted to transfer into a seat, but all seats were taken.  After we dropped off the three passengers in Harlem, the lady yelled "Now can I transfer?", which drew a groan from me, because that would delay my trip home.  The driver and the aide said no, and it turns out we had another pickup before heading into Queens.  It turned out the poor woman in the wheelchair was going to Brooklyn.  All the way into Queens, she was yelling "I want to go in a seat!" and then when we got into Queens, she started yelling "This doesn'xwas not a happy camper, and she made no compunctions about showing it -- for the next few days.  I knew it wasn't my fault -- I just happened to be there.

Later on that week,  I had an appointment at Cornell, which is right over the river from Queens.  but our 11:45 pickup came at 12:30 and, instead of going home across the river to Queens, we filled the bus with pickups and drop-offs all the way at the southern tip of Manhattan.  We had left the house a little after 8:00 for a 9:30 appointment [for which we were early], and should have been home by 12:30 the latest.  We came in the door at 4:10pm.  The ride on Access-a-Ride in a wheelchair is far from relaxing.  First of all, I am in terrible pain from these braces  [which will finally be changed out in two weeks] and it's as if Access-a-Ride never heard of shock absorbers.  The ride itself is hell.

The bright spot was Louise taking me out last Sunday to Panera and then to Red Mango for the best frozen yogurt!  I'm basically housebound except for about once -- or sometimes twice-- a month that my angel Judy Lewis comes to get me out.  And Louise finds what little free time she has to come by on a weekend and get me out.  The aides don't want to go out, except to do errands, and they don't want me along.   So I hear the weather reports of beautiful sunny days and know I can't enjoy it except for doctors' appointments or the one or two outings a month I have with Judy or Louise.  Back in 2006 and 2007, I had a lot of people who would come over and take me out of my apartment.  But those people have faded away.

Everything seems to be breaking down at once.  I have been in virtual darkness after sundown for the last two weeks.  First, my table lamp broke, and I ordered a set of "sunlight lamps" which sounded great in their online descriptions.  But in reality, they were all wrong.  I had waited several days for them to be delivered.  I am in the middle of the shopping capital of New York, but with nobody to go to the store with me,  I am forced to shop online. Then my ceiling fan/light fixture in the hallway blew and when the doorman replaced the light bulb, it didn't work.  So I think i need a new ceiling fan/fixture.  Now, I finally received the new table lamp I ordered.   And, on top of that, my super tells me I need a new bathroom sink [the stopper is broken] and a new toilet. I bought a new faucet at his suggestion for the kitchen sink [which won't stop dripping] and now he tells me I need a whole new kitchen sink.  Mind you, I still have to do it on the cheap because after I die, this apartment goes to Medicaid.  And my case being pending, I'm told that any benefits I have received since May 1, will have to be paid back if I don't get my Medicaid back.  Where do they think I am going to get the money to pay them back?  Just aides alone work 168 hours a week at $11.00 an hour.  You do the math, because I'm too tired to multiply.

Tuesday, April 24, 2012

My Own Reality Show: How NYC Bureaucracy and Health Care Messes People Up

I would like to say that last week was the week from hell.  But it could have been worse.  Mentally, I almost lost it,  but all through the week,  I had to keep my cool so as to keep my health and immunity, and not raise my blood pressure.  And of course, since I have auto-immune conditions -- the worst of which are my allergies -- my mental condition had to stay within control.  What happened was so out of my control that I had to give up any attempt to take control, and that meant I had to accept that the people involved are stupid, inept, non-caring, and nothing more than government drudges who are programmed like robots, to do and say certain things, regardless of the fact that they hold the fate of a human being in their hands.  As you read this, understand that I am a comparatively young, and very educated and intelligent person of pretty sound mind.  Also keep in mind that if this happened to me, it has to be happening to millions of other people, most of whom are older than I, and be not with as sharp a mind as I have.  Most of all, I could be your parent, grandparent, friend, any family member or loved one.  I don't think anyone really appreciates the fatigue that goes along with a neuromuscular disease.

I have Medicare, since I had to leave my job in late 2004, and collect Social Security Disability. Anticipating that I would need round-the-clock care, Eileen, the social worker at the ALS clinic at the time, referred me to an eldercare attorney, and I got into a pooled-income trust.  In order to get all that home care, you have to get on Medicaid.  The pooled-income trust takes everything except the under-$800 I am allowed to keep. The trust pays my monthly bills. with the money I send them, which is everything else. Without the trust,  I would have to go down to the Medicaid office every month and present my bills to have my Medicaid "turned on" and make sure there were no gaps, or I would have Medicaid "turned off" and would have to have it "turned on" again.  Instead -- in my case -- I just have to stay in the trust by re-certifying every year.

Recertification:  Every year, I receive the appropriate form in the mail about 4-6 weeks before the due date.  This gives me time to gather about 50 documents that have to be attached, and which give me certain information that goes on the form.  Then, for my own protection, I never let anything leave this house without making copies.  My multi-function printer/scanner/copier is not all that fast, so it's a tedious process. It's also a fatiguing activity for me, especially since this damn new wheelchair has obnoxious footrests that don't fold up like my old ones, and it's tiring to keep reaching for files, because I can't park the wheelchair close enough to the file cabinet.  It's hard for anyone to help me, because it's a lot faster for me to find the files and not have to talk to someone to give directions.

On Sunday, April 15, I pulled my wheelchair up to my desk, and it gave a jump and and landed the right arm containing the joy stick, under the desk, and the control bent totally upward so I couldn't move the wheelchair.  Sunday is TV night for me -- my three favorites all in a row 8PM "The Amazing Race", 9PM "The Good Wife" and 10PM "Mad Men".  Well, the Race was about to start, and I couldn't move, and my back was to the TV. G, my aide is not good in a crisis.  I was trying to tell her to put the wheels in manual and pull me back.  She never got me the iPad or writing board and the frustration was mounting and my voice went up two octaves. G. said she couldn't deal with "this strange voice" and panicked even more.  I finally convinced her to get the doorman, who if you compare him to the sharpness of the knives in the drawer, he's the butter knife.  It was like a scene from "Confused and Dumber".  Finally, we called 9-1-1 and two cops came and shifted the wheels while lifting the desk a bit, and I was free.  Except that my joystick was forever bent because it was in that position for a full hour.  My "Amazing Race" was over, and "The Good Wife" was about to start, but the stress was there; you could cut it with a knife.  Not only was I stressed out that there had to be such drama, but now I knew there would be challenges driving the wheelchair until it was repaired.  The process of getting the repair approved through Medicare is a long and involved one.  If the wheelchair had been pulled back immediately after this happened, rather than almost an hour later, the damage wouldn't have been as serious.  But I didn't feel like arguing about fault, or about how "unsafe" it is, and certainly not about how the aide had to get the doorman as a "witness" so I wouldn't get her in trouble or say that my voice change to a higher pitch was because she was abusing me.  The woman has been with me for five years, and I asked her one question: "So in a crisis, you are more concerned with how it looks for you, than helping  me?"  I knew the answer.  I just wanted to watch "The Good Wife" and "Mad Men"

Back in February I called my case worker JP because I knew my recertification was coming up again, and I told him I would download the M11q doctor's form and bring it to my clinic appointment.  He told me that the form was due like right now.  So of course I told him I would get an appointment at the ALS clinic as soon as possible and have the form signed.  He warned me that I'd better get it in soon, or my Medicaid will be cut off.  I went to clinic on March 2, and the next day sent my aide to UPS to fax it.  But first we have to call JP,  because even if I put the fax to his attention, it goes right to the Central Office and nobody gives it to him.  So he has to be at the fax when the fax comes in, or someone else will snatch it.  I'm not making this up.  So when my aide calls him, he says "Why are you sending this to me?  I'm not showing in my computer that it's due."  My aide reminds him that he threatened me with cutting off my Medicaid.  He says "I did?"    I call him and ask him about the recertification.  He says "Wait until you receive it and fill it out and send it in".

So the day after the wheelchair mishap, which is Monday, April 16,  I get a call from JP. He yells at me "Where is your recert?  You never sent it in?  The Central Office is cutting off your Medicaid!! Why didn't you send me a copy?"  I reminded him that he told me to fill it out when I received it, and I never received it. He yelled "According to them, they sent it to you, and you never returned it!"
"I don't care what they say", I told him.  "I never got anything"
JP said "well, they don't care what you say. They say they sent it.  I am coming to your house tomorrow. Have it ready for me to pick up!"
I told him that, even if I had the form, there was no way I would be able to do it that fast.  He said he was out in the field but would fax it to me the next day- Tuesday, which he did,  and said he would be at my apartment on Thursday to pick it up at 10:00am and I should have it ready. Maybe if I could give it to him then, we could avoid the interruption of my Medicaid. 

The next two days, I let my emails and everything else pile up.  I cancelled two appointments.  I had already gotten most of the documents together on Monday, because I had done this form 5-6 years in a row.   Unfortunately, my files are not as neat as I would like them to be, but I managed to clean out some files while I was digging for the documents I needed.  Now I had to put everything in order and make copies, with the aides' help loading paper in the printer and stapling things together.  By Wednesday early evening, it was all together.  When JP came the next day, I would be able to hand it to him in perfect order and maybe he could expedite the process.

So JP walks in on Thursday morning and sits in the chair.  He says "Feel free to ask me any questions".  I said "I have no questions".  I try to hand him the big brown envelope with everything he needs,  and came to pick up from me.  He doesn't touch it.  Instead he says "I'm in the field today.  Tomorrow I will not be going into the office because I have a training.  I will have to hold this until Monday.  If you trust me, I will take it.  But I am not responsible if it gets lost or gets into the wrong hands."

WHAT????!!    Is this really happening?  He tells me "If I were you, I would take it into my office and give it to my supervisor LR"  His office is clear on the other end of Queens in Long Island City.  He turns to my aide and says "Why don't you take it in today".  He offers her driving directions, but she doesn't drive.  And I want to go with her.  I can't go on the subway because it's not accessible.  JP doesn't tell us the Queens Boulevard Bus [Q60] goes right there [the buses are accessible], so I tell him I will book Access-a-Ride for the next day. He calls LR and verifies she will be there in the morning and I tell JP I will be there in his office tomorrow. 

He tells me he is retiring in July and says "By the way, your Medicaid will definitely be cut off on May 1, but not your home care.  But you should get it back in 4-6 weeks. I use Medicaid for my psychologist, and for dental and optical.  I was planning to get new eyeglasses for the first time in three years, and go to the dentist for the first time in two years. I guess both of those will need to wait a little longer.  "You and I won't be seeing each other again, so good luck to you",  JP says as he walks out the door.   Yeah, Mr. P, good luck to you too, and thanks for this mess-up as your swan song.  But why should you care?

So the next morning we go to the CASA/Medicaid office and we are met by LR and she calls JP out of his cubicle.  I don't miss a beat. I look at him as he escorts us into a conference room, and I set up my iPad so I can speak.  I remind him he told me he wasn't coming to the office today. He says  "I have a training later", and then he adds "I didn't know you were coming here so early while I was still here" And he gives a nervous giggle......BUSTED.....
"But Mr. P, you told me you weren't coming here until Monday. Why couldn't you bring in my papers?"
" I told you I wouldn't be responsible and you CHOSE to come in here"
"But that was because you said you weren't coming here until Monday"
Again, he repeated, "I thought you would arrive here after I went to my training", and he ran out of the room.  So, in other words, you didn't know you would be busted.

LR comes into the conference room, opens up my envelope, sees that I have everything, including a set of papers I didn't need to submit past the first year of the trust. She looks at me and says "I don't understand why Mr. P couldn't just bring this in. Why did he make you come in?"  She leaves to make copies of everything.  JP comes back in the room with her and she hands me the copies.  JP says "You see, Ms. Cohen.  It's always a good idea to come in person"  Excuse me?  Did you ever tell me that was even an option all these years when I paid $20.00 at UPS to send this, rather than $4.50 for Access-a-Ride and the luxury of someone making the copies for me with the city's paper and ink?

Fast Forward to today.  I received official notice that my Medicaid is discontinued as of May 1, including my home care. BUT I can appeal by requesting a hearing,  and then I will continue to receive my service until a decision is made. So I requested a hearing online,  and I will have to go to Brooklyn at the date they give me, even though my papers have been submitted.  And this is all through no fault of my own.  JP is retiring, so he cares even less than he always has.  I'm thinking of writing to my city councilwoman or my state senator and/or assemblywoman, but let's see how much energy I have.  First I want everyone to read it here, and know this is not just me.  Things like this are probably happening every day. All government agencies have people who are biding their time until retirement. And if they can do this to a smart and level-headed person like me, think about what they are probably doing to elderly patients or families with children.  You're right, JP ---- when you said "I am not responsible", you really meant it.  

Friday, March 23, 2012

The ALS Therapy Development Institute to Launch Phase II Clinical Trial of TDI 132 in ALS Patients - MarketWatch

The ALS Therapy Development Institute to Launch Phase II Clinical Trial of TDI 132 in ALS Patients - MarketWatch

What's great about this drug is that Novartis® is already producing it for some forma of Multiple Sclerosis. You want to "latch onto" a drug like this, i.e. that is already being used as a treatment for another disease, especially one with a larger population. It is tough to get a drug company interested in a drug which is going to be used for a small population with a rare disease. The laws of economics dictate that a drug which spent years getting developed in a lab by scientists paid for thousands of hours in that lab, would have to recuperate that money when it sells in the pharmaceutical marketplace.

I've said it before and I will say it again: ALSTDI scientists are the ones who are going to find a cure or better therapies for ALS.  A greater proportion of the money donated to them, goes directly to the research lab than any other ALS charity.

I haven't updated because I have been going through some hardships and I didn't want to seem whiny or too negative. Even though I want to present the real story of living with ALS, I don't want to seem like I am doing nothing but complaining.  Even more importantly,  I get a little irrational when I am under too much stress, and something I wish I had learned when I was healthy:  it's not good to try to handle things while too emotional.  I have always admired people who can distance themselves and get through the crisis when they cool off and calm down. I am trying to become one of those people.

I have been with a malfunctioning wheelchair for months, and finally got it fixed.  But now even the wheelchair company admits it's all wrong and have to ask Medicare for approval to do it all over again. These new footrests that separate out to the sides for transfers, are a pain.  They limit what I can do in the apartment, for example get close enough to my file cabinet or my dresser drawers.  So we are requesting a footplate that folds up and down.  Also, since I have trouble getting in the right position under my desk [or under restaurant tables] to feel comfortable, we are asking for a tray that fits over the front of the wheelchair.  Nobody ask me when it's coming.  I don't know.  Could be six months, a year, or never.

I also broke out with a painful red rash on the back of one leg.  I thought it was shingles, but the nurse and one of the doctors at the ALS clinic looked at it and gave me Nystatin [anti-fungal] cream, and it is finally clearing up, only to be starting on my back. Ugh! It's the immune system again -- back to being fastidious about probiotics, capsaicin-filled peppers, and anti-inflammatory onions and garlic.

Even stranger -- for a couple of months I was feeling more fatigued than ever.  I would sit at the computer and nod off to sleep unexpectedly.  I would say that until at least 5:00pm, I could hardly keep my eyes open.  Finally, a good three weeks after my last appointment at the primary care doctor, my apartment phone rang and a robotic recording said that, as a result of the blood testing they had done at the doctor's office at my last appointment [again, almost three weeks earlier],  I needed to pick up an additional medication at my pharmacist.  Not only was my pharmacist closed at 7:00pm when I got the call, but the robotic message didn't even say anything about the condition this new medication was for.  So my mind went crazy trying to figure out what was wrong with me, and I wasn't too happy to get that robotic call, rather than a human on the other end.  Considering that the last time I went to my primary care doctor, she had to examine me in the waiting room, because she moved to such a small office that I can barely fit in the exam room, I think it's time to switch doctors.

it turned out to be a potassium deficiency.  Because of the diuretic I take for my blood pressure, I lose a lot of water from my system, and I have been eating a lot of banas and other potassium-rich foods.  But apparently, that wasn't enough, and my potassium was very low.  I feel better now, but I was shocked to do research on potassium deficiency and find out that this can be very serious.  It can lead to kidney failure and if left unchecked, even death.

Sunday, January 22, 2012

Wheelchairs -- You can't live with them, and you can't live without them!!

So the old wheelchair is gone, and the new wheelchair is in use, but I hate these new footrests.  Yes, they keep my legs straighter, because they are two separate footrests each with a guide on the side to keep my legs straight, but they keep getting messed up.  Last week, the little latch on the right footrest -- which is the one they just replaced -- that pulls the right footrest out of the way, snapped off in the aide's hand.  Then the left footrest got all out of whack.  To simplify, neither footrest goes over to the side -- the right one doesn't move at all, and the left one, only halfway.  So it makes for a real challenge when standing and transferring.  Thankfully, it doesn't compromise anything else.  I can still go all the way back and put my feet up and stretch out and sleep.  But standing and transferring from wheelchair to/from commode or bed is painful.  Luckily, the wheelchair tech is coming mid-week to see if he can fix it on-the-spot.  If not, then I have to see about getting a loaner.  The woman I used to use at one of the ALS charities is gone, and her replacement leaves a lot to be desired, so I am hoping I won't need a loaner.  Fingers crossed.

I still say that ALSTDI is the research facility to support.  They are in the process of investigating a drug called Dexpramipexole, that is showing promise both in slowing down disease progression and prolonging life, so this looks promising.  It is in Phase II of the drug trial.  I can no longer participate in drug trials, because they usually require patients in the first 18 months of the disease, so I have to wait until FDA approval, which can take years.

The other advancement has been the FDA approval of a diaphragm pacer.  You see, with ALS, difficulties in breathing are not caused by lung problems.  Rather, it is the diaphragm, which is the muscle that goes up and down.  The lungs can be healthy, but if the diaphragm weakens with the progression of ALS, the breathing is compromised and eventually it is the failure of the diaphragm that causes death in ALS.  The diaphragm pacer works for respiration like a pacemaker works for the heart.  In order to get the pacer, the patient must have a Forced Vital Capacity [FVC] of >50.  Well mine is closer to 20.  I was disappointed when I heard I am not a candidate, but I just read an article that showed me that the pacer is not life support.  I thought it could keep a patient going indefinitely, but it can't.  In the article I read, the patient still had to use a ventilator.  Also, the pacer has wires on the outside of the body and I would still have to control it by turning it on and off, and be careful when I shower.   The tracheotomy and invasive vent are still the only measures for life support and that is something I don't want to do for very complicated reasons.

I returned to the writing of my book and -- to my surprise -- wrote two more chapters.  I have two more books in my head so I had better get moving.  In this world of ALS, lack of a crisis and lack of drama, is a good thing.  So I got a little bored and uninspired by anything else, and returned to my writing.  I feel no urgency to go outside, and I have a new writing gig at Examiner.com writing about Rego Park and Central Queens, which I have been lax about promoting.  So I figured it's a good time to finish this book, which is not the book I really want to write.  A professional in the field told me that this book about my journey with ALS should be my first book, to introduce myself to readers, and then interest them in anything else I write.  But I am having a hard time finding the thin line between writing what I know, and writing in a too-snarky and too-angry tone.  The truth is that the first few years were painful and disappointing, and I have since found a valuable path and useful lessons I have learned about many different parts of life.  I have learned forgiveness and how to find inner strength.  But the beginning and middle were not like that.  And the most important thing I have learned is that people say they want to know what it is really like to find out you have a disease like this in mid-life, but they really don't want to know.  Although I sugar-coat or omit a few things, I also want to present the joy and wisdom which comes from an experience like this.