scale=1.0" : "width=1100"' name='viewport'/> Forced to Sit Still and Shut Up -- Life Before, and During ALS

Tuesday, May 10, 2016

Tibia mostly healed, Physical Therapy, out of bed, foot blister slowing up recovery, sadness and loneiness

Well I am out of bed and I would like to stay out of bed, except for sleep time, that is.  I am reading that it takes up to a full year for a tibia to fully heal, but three months to be able to bear weight.  After two months, my orthopedist gave me a boot to put on, but I couldn't stand with it.  Something was going on with the bottom of my right foot [the side of the fractured tibia], but I didn't know what it was.  Well, I was distraught thinking that I still couldn't stand and in the back of my mind I thought maybe I would never be able to stand again.

The next morning, the aide on duty went to clean the bottom of my foot and noticed a blister, right in the spot where the cast ended. So it seems that the rough edge of the cast was apparently rubbing against the skin.  I had an appointment already planned that week with my primary doctor and she looked at it, told me to see a podiatrist, and gave me a light antibiotic in case it was infected.  The day I finished the antibiotic, I saw the podiatrist who said the blister was not infected despite th pain and there was nothing serious doing under the blister.  But it would take a few weeks to heal.  He lanced and drained it and I had weekly visits for the next month until it totally healed.  Needless to say, I was in bed an additional month.

Finally, I am standing almost as well as I did before the injury but I have home physical therapy to exercise the leg to strengthen the joints around the tibia like the ankle and knee.  When you're in bed for more than three months, the muscles atrophy and have to be "woken up" again.  All in all, I was lucky that this happened during the cold winter and apart from doctor visits, I didn't have to go outside.  Going outside for the doctor was difficult, since my toes were exposed and sticking out of the cast.  One time, we missed Access-a-Ride because we were fighting with a too-small elevator coming out of the orthopedist's office.  There was no courtesy phone call; she just pulled away right in front of my aide.  And when the aide ran after and caught up to her at a red light, she [the driver] refused to come back around or wait.  So we walked from 66th and Second Avenue to 60th Street to catch the Q60 MTA bus and my toes froze.  Luckily we were near the Q60 that goes from Manhattan to Queens.  But then we had to walk/roll from the bus stop to my apartment, toes exposed again.

There's nothing that gets you thinking and reflecting more on your life than being stuck on your back in bed.  And there is nothing lonelier. I really found out who my friends were and they were few, but I consider myself lucky.  More on that later.  I also have certain emotional addictions [more like obsessions] that reared their ugly heads during this time, and I had to pull myself off social media in order to not feed into those addictions.  Social media can be very dangerous for me, especially when I can see the wonderful fun other people have and how they are surrounded by loving friends and family.  Not that I wasn't lonely in my healthy able-bodied days, but I could get out and do something about it.

Tuesday, April 12, 2016

Month three of broken tibia and blister woes and wheelchair cushion problems

So it's coming in on the home stretch of the three months of recuperation from my tibia fracture. I enter to my two month follow up at the orthopedist and he removed the shorter cast? Which went below the knee. This was an improvement on the first cast, which went well above the knee so imagine my delight when they cut off the second cast and gave me a boot thing aka soft cast -- and told mr I could stand using this new improvement. I couldn't wait to get home and do all the things that the ability to stand, allowed me to do.

That happiness was short-lived, however. I tried to stand and the leg with the broken tibia produced the most blood-curdling yelp when I tried. Something was going on with the bottom of my foot and it wasn't good. Was it something wrong with the bottom of the boot? I had no idea. Not to mention that the good leg wasn't perfect either. You see, after two months of lying in bed, my muscles had atrophied and needed building up again. I realized how important it is for me to have physical therapy. Suddenly, my aide looked at the bottom of my foot and saw a huge cyst-like blister.  Oh hell, I thought. Great!! I happened to have an appointment with my internist a few days later and she looked at it and said it seemed infected nd gave me a one-week round of Amoxicillin.  She doesn't like to give antibiotics recklessly and for that I love her.  So I loaded up on probiotic capsules and drank kombucha to compensate.  And I made an appointment with Aadvanced Foot Care, who had solved my plantar fascitis many years ago.  The podiatrist determined I didn't have an infection, but a pus-filled blister.  He lanced it and told me to put bacitracin on it and see him in a week.  It improved but still hurt.  I went yesterday again and he said I could try putting my weight on it.  So when I came home and had to use the commode, I decided to try.  My aide had trepidation, but I did it!! It wasn't great and my leg muscles have atrophied somewhat with three months of bed-rest.  I have a prescription for physical therapy to help me build the muscle, and I also found a website with exercises for a post-fractured tibia.  I have to decide if I want to go outside for PT or have home PT.  I have had both and each has its pros and cons.

Then there is my wheelchair cushion.  When you're sitting in a wheelchair upwards of 16 hours a day, a comfortable seat is very important.  An uncomfortable cushion is painful and can cause skin breakdown and pressure sores [the bane of all people with disabilities].  I recently got a Roho cushion, which has waffle-like compartments filled with air.  It has to be regularly inflated to ensure enough comfort.  Well, one morning, we found the valve on the floor; it had come off the cushion.  A Roho cushion that cannot be inflated is useless.  In almost no time at all, my cushion deflated and of course the wheelchair vendor technician came to my apartment and confirmed that the cushion was not fixable.  So I am in the waiting period for the insurance process; this means it could be several weeks before I get a new Roho cushion.  I thought about buying a standby extra cushion -- $350.00 -- I don't think so.  The ALS Association will come to my rescue some time tomorrow with a loaner cushion.  Their loan closet has saved me many many times.  One thing I have learned to get used to is a waiting period for any wheelchair repairs or components often exceeding six weeks.  A real pain!!  Since it's painful to sit in the wheelchair with a deflated cushion, I would still find myself stuck in bed.  Instead,  I have learned from these three months that it's beneficial for me to have a couple of hours of "bed time" each day for the post-thrombotic period [after deep-vein thrombosis, or DVT].  Below is a picture of a Roho cushion.  You can see the "waffle" air compartments.  It's considered the "Rolls Royce" of cushions and is not just for wheelchairs; it can help anyone who can benefit from better weight distribution and to prevent pressure sores.  It is great for old folks who might not have a lot of butt padding and compromised back muscles.

Thursday, March 17, 2016


Call NOW to urge Senator Murray from Washington State to support the right of all people with disabilities to live in freedom!
Ask for Senator Murray from Washington State's office.
“Please cosponsor the Disability Integration Act (S.2427). Because she is the Ranking Member of the Senate HELP Committee and someone who has cosponsored previous legislation that addressed Medicaid's institutional bias, I am hoping she will cosponsor this vital civil rights legislation.”
It’s a travesty that we can address! A quarter century after the Americans with Disabilities Act (ADA) was signed into law, people with disabilities – including young people – are still trapped in nursing facilities and other institutions. To address this injustice, Senator Schumer (NY) has introduced the Disability Integration Act (S.2427). This legislation will require states and insurance providers that pay for Long Term Services and Supports (LTSS) to provide community-based services first and offer HCBS to people currently in nstitutions. This legislation has broad-based support in the disability community from over 300 organizations across the country.
The proposed legislation says:
"No public entity or LTSS insurance provider shall deny an individual with an LTSS disability who is eligible for institutional placement, or otherwise discriminate against that individual in the provision of, community-based long-term services and supports that enable the individual to live in the community and lead an independent life."
The legislation would also make it illegal for a state and insurance providers that pay for LTSS to fail to provide HCBS by using waiting lists, screening people out, capping services, paying workers too little for services, or the other excuses which states have used to keep people from living in freedom.
You can learn more about the legislation here:
The full supporter list is available at:

Call NOW to urge Senator Murray from Washington State to support the right of all people with disabilities to live in freedom!
Ask for Senator Murray from Washington State's office.
Tell them: “Please cosponsor the Disability Integration Act (S.2427). Because she is the Ranking Member of the Senate HELP Committee and someone who has cosponsored previous legislation that addressed Medicaid's institutional bias, I am hoping she will cosponsor this vital civil rights legislation.”


Saturday, February 27, 2016

My Life Mostly in Bed [Cleaner Than it Sounds] With a Broken Tibia

I have now spent my first month mostly flat on my back in bed.  Unfortunately, this isn't as fun as it sounds.  I am sadly alone while in bed -- what a waste!!  But I have to spend at least another month in this position -- and sadly alone.  I went for my one-month followup with my orthopedist Dr. Radnay and he is pleased with the way my tibia is healing, but not confident enough to let me go cast-less yet.  So I have graduated to a hard cast which stops below the knee; this is a slight improvement on the hard cast I had going past the knee.  At least now I can bend my right leg at the knee -- for what it's worth.  I still can't get into a shower and wash my hair.  Trust me -- dry shampoo doesn't cut it, and for reasons I will elaborate further below, it's not really practical yet for me to go to the salon to get my hair washed.

First, let me state the [seemingly] obvious.I cannot stand or put any weight on my right leg.  And to stabilize the break as much as possible, I have to stay in bed as much of the day as I can.  This usually means coming out of bed in the morning for a short time for breakfast and medication and then back in bed for the rest of the day, unless I have a visitor or a doctor appointment.  I can't go tootling around the neighborhood, especially in cold weather.  My right foot is exposed and I don't have a sock big enough to go over the cast.  Also, traveling in the wheelchair is damned uncomfortable because, without a shoe, the right foot will not stay on the footrest; so my right foot dangles and I have to tilt back enough so it doesn't drag the pavement.  When I tilt back enough, I can't really see where I am going and certainly cannot see what obstacles await me on the ground.  So, in the tilted position, I am prone to getting stuck in holes and cracks in the pavement.  Another accident is just what I don't need.

I also have to ask for every little thing I need.  Thanks to the ALS Association's loan closet, in my second week I borrowed a hospital-style tray table.  But if I put my laptop on the table I can't have a beverage close by or I risk spillage on the keyboard.  So every time I need a sip of tea, I have to ask the aide, a well as every little thing that isn't already on the table.  They don't think I see, but I catch eyes rolling out of the corner of my eye. And the laptop - did you ever try to type on a laptop in bed on a tray table?  I can never quite get the head of the bed in a good enough position to comfortably type on the keyboard.  And, for the best possible position, my head has to be far back to the top of the bed.  I don't have to be reminded that I need to drop weight, but every time I ask the aides to move me up on the bed,  I can sense their pain.  The most private and intimate tasks I will leave up to your vivid imagination. But tooth-brushing is a mess, and sometimes eating and getting the food completely in my mouth is harder than you can imagine.

Thank goodness for Cindy and Nancy who have been assisting me with organizing and clearing out the clutter in my apartment, especially the cardboard boxes.  In case you didn't know, cardboard attracts cockroaches, because they like the taste of the glue that holds the boxes together.  I bought storage ottomans to store some of the clutter and one of my aides and I went through some of the drawers to make up donation bags for some stuff and throw out other stuff I couldn't donate.  Nancy painstakingly put together the cart fro, the box that was the tibia-breaking culprit.  Who needs a man? [although a man would be nice too].  And Cindy helped me with more clutter and gave me homework: I am to go through my file cabinet and bags of papers and put aside what I need shredded.  On March 17 [St. Patty's Day], she is coming to collect shreddables and bring them to a friend who has an industrial-style shredder.  I actually have a load of stuff more than 7 years old to shred and make room in the filing cabinet 

There is a good reason why I have more room in the apartment, and I will give more details next time.  Right now it's time for me to go back to my bed where it's difficult to type. Future projects:  paint the apartment, get a couple of new appliances, and move some other things around.  These things increase my visit-ability, but this is an ironic twist, because as I will extrapolate in future posts, less people have been visiting lately. You win some and you lose some with ALS, although it is easy to lose some and harder to win others.  Back to my bed -- unfortunately, alone.


Wednesday, January 27, 2016

2016 Started With a Bang -- to My Tibia , Cast Over My Knee, Bed Bound-- Forced to Sit Still for Three Months

It started with a box that came from Target.  It contained a 3-tier metal trolley that I could load things on, things that have been sitting on top of my dresser and causing ugly clutter; things like creams and cosmetics and nutritional supplements.  But I couldn’t find anyone willing and/or able to put the trolley together.  My building porter agreed, and I planned to give him an extra $20 to do so.  But then Juan was promoted to building super and found out what a busy job that was, and just didn’t have the time to do it.  So, in the meantime, my aide Cheryl found a cheap plastic trolley for $10, which I used for my BiPaP ventilator and there wasn’t any room for anything else.  So I would still find use for the Target trolley, but decided I would return it.  But when I checked the website for the receipt, I learned that the trolley was an “unreturnable item”.
So the box sat on the floor, where it still sits now.  And I went to get something off the top of the cluttered dresser and didn’t realize how fast the wheelchair was going and banged my foot on the box.  My knee bent and I heard what I thought was a crunch, but figured I just twisted my ankle and it would get better.

On Saturday January 16, I had some pain when I did my usual “stand and transfer”  but I assumed it would get better and it seemed to.  By Saturday night my aide was using a “u-sling” for transfers because it doesn’t require me to stand.  My leg was so painful I couldn’t sleep that night.  Because I am taking the blood-thinner Xeralto, I cannot take any NSAIDS [like Advil, Aleve, aspirin or Motrin], so that leaves Tylenol, of which two extra-strength caplets barely took the edge off.

By Sunday afternoon, I knew I had to go to the local ER [North Shore/Long Island Jewish Hospital in Forest Hills] about six blocks away from my apartment.  But I couldn’t drive there myself because I had to tilt the wheelchair back to raise the painful leg, and that’s not a good driving position.  So we called one of the volunteer ambulance corps and they referred me to another team because they thought I was going to Cornell.  The second team brought me to the basement and we waited for one of the EMTs to come around with the ambulance.  Two hours later, after the ambulance wouldn’t start, we were ready to go six blocks.  We made the initial call at 2:00pm and reached the ER door at 4:30pm.  I was done by 6:30.  I had x-rays and the doctor [Dr. Rachel Morris, who was wonderful] told me I “broke a bone in the foot” and gave me the option of staying there overnight to be seen by an orthopedist the next day, or go home with painkillers and see an orthopedist of my own choosing.  Now I knew that the next day was Martin Luther King Day and there was no way I was going to be seen at that hospital by any kind of decent specialist on MLK Day.  I chose to take the painkillers and go home and call my doctor at Cornell on Tuesday morning.

My friend Debbie Wolfe called my primary care doctor -- Dr. Susana Morales -- at Cornell and I was referred to Dr. Craig Radnay,  an orthopedic surgeon on East 66th Street that Thursday.  Dr. Radnay’s office took their own set of x-rays and they showed I broke my TIBIA [pictured above]!!  As it is risky for an ALS patient to go under general anesthesia, he wants to see if the bone will heal without surgery.  So I have a hard cast up to just past my knee.  I am to be in bed as much as possible, and keep transfers with the lift to a minimum.  So here I write this with my limited time out of bed at my laptop.  I spend about half of my waking time in bed.  Those who know me, know that’s not my style.  I am learning how to watch TV on my mobile devices.  Truth be told, I am most comfortable in my bed covered by my warm comforter and with my legs elevated.  

I am scheduled to see Dr. Radnay again on February 11, and I am hoping and praying that the  bone is healing with the cast, which I am predicted to wear for three months. I am also in less pain while in bed.  Starting today, I reduced myself to ½ Oxycodone every 4-5 hours.  Oxycodone makes me very sleepy and one of it’s fun side effects is constipation.  So I will give regular updates; in the meantime, please keep me in your thoughts and prayers for a quick recovery without the need for surgery.

By the way, Chelsea is staying in a wonderful home while I am recuperating….More on that next time.  But so far, she has met a bunny couple and a very inquisitive cockatiel…….pics next time too.

Sunday, January 10, 2016

Checking Back In -- Autumn Brings DVT Blood Clot Again [or still?], Weill-Cornell Stay and "Dr. Jeopardy"

I checked out for a while -- I needed to.  I was mourning the loss of a Dad as I knew him, dealt with another DVT [deep vein thrombosis] and also absorbing some deep criticism of me and the blog, the importance [or not] of honesty, and the sudden appearance of new angels and great "random acts of kindness" which took me out of a rock-bottom feeling that I was beyond unloved [hated in some cases] and I had to look at myself and my motivations and not just wave off some hurtful truths with an arrogant "it's her/his shit, not mine".  

Someone who plays a very big part in my life said this blog was nothing but an angry rant at everybody who had ever done me wrong.  Maybe it is, at times, but only to try to inform others about life as a person who was living  very actively and now finds herself with limited independence.  Dealing with this disability for almost 12 years, I fall into a sort of complacency at the way things have turned out. We, as people with disabilities, are the last marginalized group to suffer discrimination, and have to fight for justice and equality.  If anyone thinks I have no right to get angry when I encounter humiliations and bad treatment, let them live one day in my wheelchair and try to get to an appointment and depend on Access-a-Ride; see how people treat them out in the world, and how much they cannot do and places they cannot go;  even after 25 years of the Americans with Disabilities Act, there is still so much to be done.

In late September I went for a followup with my local cardiologist and this was a very timely appointment.  My left leg, where I had the blood clot in November, 2014, was still swollen.  He had told me in June when I went for my six-month appointment that the clot was gone and I could go off the blood thinner [Xeralto].  This was a big relief because using blood-thinners causes me to bruise more easily, and a simple knock or bang could cause a serious bruise and even internal bleeding.  So I was relieved.

So by the time my late-September followup appointment came around, I was concerned because my left leg was swollen again and red and shiny; these are all symptoms of a clot.  So I asked the cardiologist to check it out.  He seemed reluctant but -- with five minutes to go before my scheduled Access-a-Ride pickup, he got the technician to do a sonogram in the hallway.  Yes -- you guessed it -- his exam rooms are tiny and I am out in the hallway.  As a matter of fact, my EKG had to be done earlier with my shirt up to my neck and my bare back in the hallway -- bra strap and all. Anyway, the sonogram seemed to indicate that the clot was gone. My vehicle was outside so I ran out and quickly asked the doctor why he thought my leg was so swollen, and he shrugged his shoulders.  About 10 days later, one of my aides begged me to go to the local [N. Shore/LIJ] ER and I told her I had an appointment with my Primary Doc at Cornell in 4 days and I would have her look at the leg.  By now the leg was redder, shinier and even more swollen. I asked my Primary doc Dr. M to look at it, and I mentioned that the cardiologist had said there was no clot.  When she lifted up my pants leg, she was concerned and said "It's probably just a 'post-thrombotic syndrome' but just to ease our minds, let's send you for another sonogram."

When my aide and I glanced at the screen while the tech was passing the wand over my leg, and saw a huge white area, we both looked at each other like "this can't be good".  When the tech was gone for what seemed like an eternity and came back into the exam room with the radiologist, I knew something was up, but I said "Access-a-Ride is coming in five minutes, so we have to make this fast."  Ha ha ha!! He told me I would not need transportation because I wasn't going home so fast-- at least not today.  We were escorted to the Weill-Cornell [NY Presbyterian Hospital] ER where I got a little private room in the corner and watched TV until I got into a semi-private room upstairs at about midnight. I really thought the nursing care was very good at North Shore/LIJ [Long Island Jewish] in Forest Hills] last year but compared to the care at Cornell, NSLIJ was Motel 6 and Cornell was the Hilton.  Since my roommate was prepping for a colonoscopy and running between bed and bathroom all night, [and past my bed] I sat up and watched TV literally all night until a respiratory therapist brought me a bi-pap vent at 4am, without which I can never sleep, especially with the lights on.  

They had originally promised I could go home early the next morning, but of course that was a big joke.  The night before in my private room in the ER, a young resident came in to check on me, and I said "please don't disturb me during Jeopardy" so he kept coming in periodically and throwing trivia questions at me all night.  The next morning "Dr. Jeopardy" was on duty upstairs on 5North and kept coming by and throwing trivia at me, and I threw questions at him.  I stumped him with "name 8 countries with 4 letters"[can YOU?]..and we had a lot of fun.  Anyway, Cornell's idea of "early in the morning" was 6:00 that evening.  I have to say the food was restaurant quality and I'm not kidding.  I ate till I was busting and still had food left over.  I had pancakes and turkey sausage for breakfast [that was only part of it] and my favorite -- salmon-- for lunch and even the broccoli and potatoes were perfectly seasoned!  I thought the food at NSLIJ was good but this was delicious.  And in case you question my culinary judgement, anyone who knows me, knows I am a foodie, so I know good food.  

Cornell did something NSLIJ didn't -- they gave me an injection to disperse the clot.  The bad news -- I am going to be on Xeralto permanently.  Now, Xeralto [along with Eliquis and a few others] is part of a new generation of blood-thinners.  The old generation [Coumadin, Heperin etc]  require weekly blood testing and dietary restrictions cutting out vitamin-K foods, such as spinach, kale and Brussels sprouts [all dark leafy and healthy greens that I love].  The new generation of blood-thinners does not require frequent blood testing nor dietary restrictions.  Another reason I am happy to be living in these modern times. 

Friday, August 21, 2015

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.

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.