Cluttered Space and a Cluttered Mind but the Existence of Angels

I am stuck and it's my own doing.  I was up to over 2,000 emails after Cyber Monday and I was forced to face some truths about myself to figure out that there were a lot of mailing lists I needed to unsubscribe from.  I have had some angels in the past few months, which I will get to later.  But many people have left my life to go pursue other interests and take care of themselves.  I don't bother contacting many people because they think they need to respond to my "how are you?" emails with 101 reasons why they haven't come by and/or kept in touch.  I've learned to back off and let people come to me.  The problem is that fewer and fewer people are caring to keep in touch. "Busy" is a relative term.  When I was working full-time and studying for my Masters at NYU, I saw the people I wanted to see, so "busy" is code for "I am not interested anymore", so I back off.  As everyone knows,  when I lose people from my life, there is little chance to make new friends.  All summer I was waiting for a nice surprise, and two bunny rescue angels came over after Chelsea's near-death crisis.  They noticed my filter light for the air conditioner was on,  and proceeded to clean the filter.  Suddenly they noticed all my coils were corroded and I figured this was probably due to the work that had been done on my building's brickwork the summer before.  The building management had suggested we cover up our air conditioners and leave them off, but this was not going to happen in the middle of July.  So I had been breathing all kinds of junk and toxins, and I have a disease that already compromises my immune and respiratory system.  So the consensus was that I needed a new air conditioning unit.  So my friends looked at me, as I said "yeah I'll get one".

Well, they said "No you won't.  We know you".  So a week later, there was a box at my door from Best Buy, with a new AC unit.  $60 to my assistant super and he installed it.  Now, those are angels!!  All summer long, I waited for another miracle.  The ALS Walk was in late September and my aide Cheryl and friend Louise got me in and out of the car, to be joined by the Wolff family.  A small team this year, but a team nonetheless.  I posted about my team on Facebook and a couple of surprise donations came in, but no bodies to walk with us.  But the donations were somewhat of a surprise -- one from a new friend who has MS and another from a high school friend who also has MS.

I managed to receive a blessing from two new angels.  One is a lady with MS who lives in Brooklyn.  She came out to Queens and took us to Ben's Best.  It is really nice to go out with another person with a disability who really "gets it".  She has wheelchair troubles and I know that we will get together again soon; I know her promises are not empty.  I had another lovely surprise in October.  A bunny-rescue friend who had helped transport Chelsea to the vet during her crisis this spring, met me and my aide Gulshan at the New York Botanical Gardens and then treated us to lunch at a pop-up Japanese restaurant there.  She left with a promise to re-visit the Gardens during the famous train show during December.  I will wait for her to come around if life doesn't get in the way.  If not December, I am sure something will happen with her in the future.  I have a standing invite from a lady in Manhattan [who is with ALSA] for a museum visit, and I have an angel in Manhattan who sends me personal care items every month and would meet me for lunch any time I would ask.  She does enough and will always be my special angel.  My angel volunteer who has been coming for 7 years, had back surgery this summer.  But we got together once a month during fall and will go to a museum in February.  And Louise came a few weeks ago and we ordered lunch in.  I was invited to my sister's home for Thanksgiving.  It was the first time I had seen my family since February.  

I am amid clutter all the time.  And my apartment is nowhere as clean as I would like it to be.  I have to pay $60 for a good cleaning in my studio apartment, and I rarely can spare the cash, especially with the holidays coming and having to squirrel away everything I can for tips fo the building staff and the few Christmas presents I have to buy.  I have boxes and cartons all over the place because nobody wants to go to the storage room in the basement to store and retrieve them.  I now have Chelsea confined in a corner, but have to pay someone to clean her space.  I have a bunch of clutter on top of my dresser and I have to clear drawers to transfer the stuff to.  But this is not easy from a wheelchair.  But I have to do it a little at a time.

And, the emails -- I am finally getting realistic about what mailing lists I really need to be on, according to where I can realistically shop and where I will reasonably be able to go during the rest of my life.  The aides are no longer willing to go with me on social visits.  I can go on Access-a-Ride by myself to meet a friend, but I am deathly afraid of having a bathroom urgency and nobody to help me.  My friend with a disability whom I know from the Concepts Board actually claims to have trained his bowels to empty every morning, and then goes off on his own to study at Queens College.  That is quite a feat and I know this is Too Much Information, so I will stop for now.

Bye bye summer, I hardly knew ye. Watch for drug interactions.

Why did I take so long to update this time?  I don't know.  This summer was a waste for me; it might as well have been winter.  I was fighting such a low-grade depression that I didn't realize it was there.  There are exactly two people who ever get me out.  One had back surgery this summer and the other was busy doing other things.  I was very distracted.  In fact, by the end of the summer, I realized even I had to prioritize.  I stopped my outpatient physical therapy because my knee pain was gone.  I don't believe in taking advantage of my Medicare coverage just because it's there.  Also, I don't know if the therapy was really making it improve or it was just healing on its own.  Now what came in the place of the pain was a "pins and needles" sensation  which my neurologist called a "neuropathy", but couldn't give me a good reason why it appeared.  So he referred me to a rheumatologist which I will see next week.  In all the research I conducted, neuropathy is a result of diabetes, which I do not have.  So this will be very interesting.

So I had asked the ALS Association for one of their volunteers from a new program they have.  I was told they didn't have a "suitable" volunteer for me at this time.  Then, someone there had a conversation with someone from MDA and it came down that they thought my aides should be taking me out.  Well, guess what?  Home health aides are obligated to take me to medical appointments.  And, a few years ago while my main aide was single and had no children living with her, she went with me to my family on Thanksgiving because she didn't care what time she arrived home.  Now she has an infant, a toddler and a husband, as well as a pre-teen who wasn't living with her, but is now.  So life has changed for her.  In the old days, she and I even went to baseball games and a couple of Broadway shows.  Now, she's not so interested in those things.  And two of the aides who loved to sit outside in the park with me, are no longer with me.  And there was a discussion at some point that I should "make them" go places with me.  Well, I don't believe in forcing anyone to do what they don't want to do; that's not a good recipe for a successful relationship.  So I guess ALSA's volunteer program isn't for me; at least they have determined that I don't qualify because I have aides.  Oh well.  So I barely left the apartment this summer except when I forced myself to take a book and sit outside.  Which left me open to "where is your girl?"  [She can't sit out here in the sun for long, so she is inside cleaning up, and I can text her if I need anything, and besides it's really not your business anyway, nosy neighbor who never cared about me in the 9+ years I have this disease].  There were times I became very frustrated and angry and even defeated myself by losing energy and interest in everything. 

So my summer went beyond not seeing a beach or being invited to a barbecue.  Just leaving the apartment and sitting in front of my building was an accomplishment.  I waited and waited for a surprise.  Last summer, my old friend Liz suddenly emailed me to get together, and my cousin Rich came into town with his kids from Portland, Oregon and we had dinner.  No such luck this summer although I waited for family and a surprise friend to suddenly think of me.  My surprise angels came at the end of the summer when a Facebook friend with MS put aside time and taste buds to go to lunch next week.  Also a bunny rescue person who helped me with Chelsea this spring, had become a reader of this blog and asked me if I would like to go to a museum or the Botanical Gardens with her.  Of course I agreed.  Not to mention that I have an open invitation all the time from a friend from ALSA who invites me to a museum all the time.  I think I can convince my aide on duty next Sunday to agree to go to the Botanical Gardens with me.  The problem is the occasional bathroom duty, which can turn to an emergency on rare occasions.  I need to have an aide nearby in case I need her.  So going out in the neighborhood works; going farther, I pray nothing happens that I can't handle with a friend.

Getting back to my neuropathic pins and needles, my neurologist prescribed Lyrica, a medication usually prescribed for fibromyalgia and diabetic neuropathy.  A few days after starting this drug,  I had a very bad allergy episode and I did what I always do -- I took a Zyrtec.  It was Friday night and the allergy symptoms improved almost right away -- bless that Zyrtec.     On Saturday morning, I dropped off to a nap after breakfast and sent the aide to do some errands for me.  When she came back, I heard her yell my name really loudly.  She yelled "oh my God, you scared me.  You were passed out!"  So I fell back to sleep and woke up for lunch.  What I was typing on my iPad wasn't making sense and I felt confused about time and space.  When I woke up that afternoon and saw the cable box had a time of 3:08, I wondered why there was so much sunlight in the room in the middle of the night, and why I was sleeping in my wheelchair.  Why hadn't anyone put me in my bed?  I heard my aide in the kitchen, but still wondered why it was so sunny at 3:00 in the morning.  I was so groggy and discombobulated that I convinced myself I was in Scandinavia where it is sunny 24 hours a day.  Suddenly, my aide came in with the laundry and I wondered who was in the kitchen if the aide was down in the laundry room.  I fell back to sleep, woke up for dinner and couldn't remember an hour later, what I had eaten, or if I had eaten at all.  The night aide came at 7:00pm and I pointed out something big and black which was scurrying from my bed to my dresser and she assured me that there was nothing scurrying around my apartment. 

I don't know how I did it, but I got to the computer and looked up Lyrica drug interactions.  There it was:  do not take Zyrtec, Claritin, Benadryl, Allegra and a listing of any and all antihistamines and allergy pills known to man.  It was bad enough that decongestants became verboten when I was diagnosed with hypertension.  But now what? It was now hay fever season as well as my usual allergies to dust and the rabbit hay.  How will I get through it?  I hope the rheumatologist come up with a solution.

Fair Hearing in Brooklyn

On April 24, I received a letter from New York City that informed me that on May 1, my home care would be discontinued because I never returned my application for recertification of Medicaid, which pays for my home care.  Just to clarify:  I have Medicare for my doctors, hospitalization and drug coverage.  I clarify this because recently, a friend confused the two.  When I said that I intended to change primary doctors, she asked "Is there another doctor in the neighborhood?"  I told her that was a strange question; did she think my internist was the only doctor in Central Queens?  She replied "I mean a doctor who takes Medicaid", and I was stunned.  Not only is my neighborhood #1 in Medicaid claims in all of New York state,  and a doctor who didn't accept Medicaid could never survive in Rego Park, but didn't she realize that I am on permanent disability after a 30-year work history and therefore eligible for Medicare?  Anyway, what necessitates my Medicaid coverage is the fact that I need home care.  Just thought I would clarify that Medicaid is not my primary health care coverage. 

So I still panicked when I heard that my home care was in jeopardy.  However, if I applied for a "fair hearing", my Medicaid home care would be continued without a gap in service.  If my fair hearing wasn't ruled in my favor, I would have to pay back my home care charges from May 1 until my fair hearing judgement.  The issue at hand was that I never received a recertification package, and I thought maybe that the entire procedure had changed because the city agency [CASA] was supposed to be dissolved this year.  Also, this exact thing happened last year and my former case worker -- Jose Perez [retired since last July] was always on top of things and called me even before I got the letter from the city, to tell me "Heads up.....you will be getting a threatening letter from the city.  If you fill out the application which I will bring to you tomorrow and return it to me at the end of the week, I will bring your case up to date"  Mr. Perez came to my apartment the next day, Tuesday, and I took Access-a-Ride to the CASA office in Long Island City on Friday.  A week later I received notification that my case was up to date.

So this time, I called my new case worker and assumed he could do the same service for me.  Instead, he insisted that my case was fine until October of 2013.  And finally, after going back and forth with the new case worker, I received a notice in early June that my fair hearing was scheduled for June 14 at 1:30 pm.  I called my case worker again who informed me "I found out that your case is not okay.  I am going to attach the form in an email".  When I advised him that the attachment was corrupted and I could not print it [what else could go wrong?], he offered to come to my apartment on Tuesday, June 11 with the form, which he did.  When he arrived at my apartment, he said that he spoke to some lady in his office who "was in charge of fair hearings" [whatever the hell that means] and this fair hearing guru advised me that I should fill out the recertification form,  get the [50+ pages] of documentation together, and bring it with me to the hearing.  I was then assured that everything would be all right.

Well, a lot this expert of fair hearings knew.  I spent all day Tuesday, Wednesday and Thursday getting together my documentation, which is not an easy task for me.  I needed to scan some of my documents and it is not easy for me to do that in my new wheelchair that doesn't have seat elevation.  Every lift of my printer lid and every stretch across my desk is fatiguing for me.  I find that after I do two or three pages, I have to rest and I am ready for a nap.  Needless to say, my knee pain [a whole other epic saga] was at its peak at that time, and I found myself popping the maximum dose of pain meds [OTC because my internist refused to give me a prescription -- another epic saga].  I found out that even over-the-counter pain relief can put me to sleep and cause inconvenient stomach issues.  Moreover, I had to tilt back my wheelchair every hour or so and put my feet up on the recliner at the whole opposite end of the room from my desk, when my left leg started to hurt too much.  So I had to get together all my documents and take naps and breaks in between.  And my room is so cluttered that my wheelchair doesn't pull up to my file cabinet comfortably [anyone want to invent a wheelchair-accessible file cabinet?].

So what is already a daunting task becomes even more daunting for a person in my condition.  Nevertheless, I felt I was well prepared for my hearing.  How wrong I was!  When I entered the hearing room, there was a judge and a lady [Ms. Pettiford] from the city agency who sends out the recertification forms.  I said I never received it and I had it ready for them, and really naively believed they would say "Thank you, Ms. Cohen, thank you for coming and we will take your recertification."
That's not what happened.  What happened was something like this:
Judge:  Do you usually have a problem with your mail delivery?
me:       [stunned] Well, there is a lady named Esther Cohen on the other side of the building, and
             sometimes I get her mail. [true and I was surprised I was able to answer so quickly]
Judge:   What apartment does she live in?
me:       You know, I don't know, because she sent a young girl once to pick up her mail and when I
              asked her apartment number, she would not tell me, and the doorman has no idea who she
              is, and when I give her mail back to the mailman, he says there is no Esther Cohen in the
              building.
Judge:    Then how did you know she exists and how did you find her?
me:         I looked her up online and found a phone number and I called her.
Judge:     Have you complained to the post office?
me:          no
Judge:      Have you complained to the landlord?  After all, you must have missed other important
                 mail.

 I say that I have to think she is illegally living in the building and I had no desire to
 get anybody in trouble.

Anyway, to make a long story short, Ms. Pettiford presented a thick pile of documentation with a mailing history of documentation from her office to my home.  She was a well-dressed and well-spoken woman and I have to say she was mighty scary.  I told the judge that I got very little "snail mail", that most of my bills came by email.  Suddenly, the judge asked for my apartment number and I said it was A11, and she then asked if I was in the habit of putting my apartment number on forms and anywhere I was asked for my address. I said that I made it my point to do that.  Just to prove I was telling the truth, the judge asked me to produce a piece of mail or a form I had filled out with the apartment number, which I did.  She then asked me to produce a piece of mail I had received with an apartment number, which I did.  She thn looked at the mailing history provided by Ms. Pettiford and remarked that my apartment number appeared different ways; sometimes not at all, sometimes correctly, sometimes as 11A and sometimes as apartment 11.  In the end, she requested that Ms. Pettiford correct my apartment number in my records.  I was informed that Albany would let me know of their decision.  On the way out, both Ms. Pettiford and the judge asked if I was okay.  I said I was okay but would feel a lot better if Albany ruled in my favor.  The judge then whispered to me that she felt the judgement would be favorable.

On June 21, a week after my hearing, I heard from Albany that my judgement was favorable and I should submit my recertification as soon as possible.  Upon further inspection, I noticed that I was missing one of the statements of the year's worth of NYSARC pooled-income trust monthly statements I am required to submit.  I requested it from NYSARC and had to wait a week for that.  But I am finally ready to overnight my whole recertification package to my case worker at CASA.

In retrospect, I do remember that my former caseworker never seemed to get my apartment number correct.  Every time he visited me, I had to correct him on that piece of information, as well as other pieces of information.  And the NYSARC statement that I was missing?  I wish I knew if I misfiled it or never received it as a result of my old mail-lady retiring after almost the whole 27 years I have been living here, or did it go to Esther Cohen?  This gives me a heads-up to keep on top of my statements and make sure I receive them all, and be on the alert if I am still around in January of 2014 to chase down my recertification application if I don't receive it by mid-January.  It was a big wakeup call for me to keep on top of everything much better than I have,

And once again, I pose this question: If all this can happen to a person as independent and with total intact cognizance and intelligence as I am, what must elderly and confused people go through?  I am very proud of myself getting through all this, all alone with no family involvement, and facing this judge alone with my iPad to communicate.  I have a father who is no longer able to drive out of his immediate neighborhood and suffering from early dementia, and a sister who has three children, a husband and a full-time job.  The only friend I have who helps me in these things, was not available to go to the hearing with me.  All I had was myself. 

A Very Tough Several Weeks: Challenge After Challenge

New information:  Rate of ALS is lowest in Alaskan natives and Native Americans.  So maybe something can be learned from studying those populations. Or maybe I should move to Alaska or a Native American reservation.

By now, you would have to be living in a cave or in a coma for the last few days, to not know that Angelina Jolie announced that she had a double mastectomy a couple of months ago, as a result of having genetic testing [for the breast cancer gene -- BRCA1 and BRCA2].  The first thing I thought about was my own mother, who had breast cancer for the first time in 1976 and then had a recurrence in the other breast in 1994.  That second occurrence led to metastasis and unfortunately my mom passed away on October 29, 1995.  My Mother's mother died of breast cancer in 1948 at the age of 50, and my mother's youngest sister died at 35 from breast cancer in 1970.  Now, my mom's younger sister [80 now] and older sister [84?] are both breast cancer survivors.  Faced with that risky family history, I have my mammogram every year, but never had the BRCA test.  But what if I had had the double prophylactic mastectomy that Angelina had?  I still would have gotten ALS.  So, although Angelina Jolie brought her breast cancer risk from 87% to 15%, it doesn't preclude her getting other diseases.  I might have considered taking the same route because I don't need a BRCA test to tell me I am at high risk for breast cancer.  And I still would have gotten ALS, and would have been still at risk for other cancers.  And even if there would have been an intervention to prevent ALS, I wouldn't have taken the opportunity because ALS doesn't run in my family, and was the furthest thing from my mind.

I am having a very painful six weeks.  I had to put a stop to my home physical therapy because of intense pain in my left knee.  The pain still persists.  If I don't sleep on my right side, I don't sleep.  I have to tilt back in my wheelchair much more than before, and prolonged periods at the computer with my legs hanging down, are painful. I hate to take pain medication, but the pain is so unbearable, I have no choice.  My MRI shows no tears or rips and surprisingly, no arthritis [another condition that runs in my family-- my father's side].  So the orthopedic doctor gave me a prescription for physical therapy-- this time to strengthen the knee and calm down the pain.  Not helping the matter was a sore on my left foot from abrasion of my AFOs.  So off to the orthotist I went and she put extra padding in my AFOs and found an "off the shelf" orthopedic shoe that actually fits over my AFOs and will cost half [after needed lifts are put in], than the $800-1,000 initially quoted for custom shoes [which is why I never ordered them], out-of-pocket because Medicare will only cover them if I am diabetic [a disease I have escaped so far]. The whole process of setting up physical therapy has to be started again.  Then, I got a raging spring cold.  Colds have to be managed carefully in ALS patients because they can so easily turn into pneumonia, which can be fatal for us.

My beloved bunny Chelsea ended up at Catnip and Carrots Veterinary Hospital for a week after almost dying.  Last Friday,  she lay in a corner,  not moving and not eating.  Later in the afternoon I offered her some banana.  When she refused the banana, I knew there was a problem.  I contacted my whole network of bunny rescuers. A few offered to come but didn't have cars and could not transport her to the vet.  I might mention that Chelsea had just come out of a crisis -- she had a very sore hock [foot] that necessitated a stay at Nancy's house and trips back and forth to Catnip and Carrots to change her dressing.  Although I knew her sore hock had healed, I thought her lack of movement meant that maybe her hock still bothered her.  Later I had to face the reality that she was in great danger. Mary Ann and Nancy came about 11:00 pm and Chelsea's temperature wasn't too low [in bunnies, the temperature goes down in sickness -- not up like humans], and Mary Ann felt her gut sounds were normal.  But she took Chelsea to her house so she could monitor her temperature.  The next day -- Saturday -- after staying up until 3am to monitor her temperature, administer medication,  and put her on heat -- Mary Ann had someone take her to Catnip & Carrots because she was puzzled about why Chelsea still refused to eat.  The vets said it was a case of bloat, which can come on suddenly and is often fatal.  Had I failed to act, and had Mary Ann not been vigilant enough to make sure the hospital could take her [they were swamped and initially said they couldn't fit her in].  Had she or I waited any longer to take action, Chelsea would be dead.

The other thing I didn't need was a letter from HRA that my homecare would stop on May 1 [I received the letter around a week before that deadline] because I never returned my recertification form.  I had never received a recertification form.  Moreover, I have a document, signed by my caseworker, that says I am certified for homecare until October 31, 2013.  My caseworker says he will work to straighten this out, but in the meantime, I should submit an M11Q [medical request for home care].  So, since my next clinic appointment isn't until July, I have to make a boondoggle trip to my neurologist for an extra exam so he can fill out the form.

My knee makes Access-a-Ride very painful because having my foot on the footrest for any length of time causes pain.  Ditto for any riding in the wheelchair through the street.  Because of this, I haven't had the inclination to leave the apartment, even though there have not been many offers by people to take me out anyway.  I have asked ALSA for a volunteer this summer to go out with me, but they haven't found anyone yet.  I have a problem keeping in touch with people; even when I send an email to a friend asking "how are you?"  they seem to take it as "Why haven't you been around?" and respond with a litany of how busy they are and all they are doing.  Because of this, I have made a resolution to not keep up my part of a friendship.  I can't even ask "how are you?" or give an update on myself without either getting no response, or getting a response that really annoys me.  Why do people always think it is about me?  Or worse yet, when I write to a friend with concern about some issue she is having, why do they always answer with "Don't worry about me.  What you have to deal with is so much worse".  I have come to the conclusion that I cannot even GIVE to a friendship without the other person feeling I am only thinking about myself and/or pimping for attention.  I would rather have truths than people tiptoeing around me, as if I am fragile and might break.  I think I have demonstrated that I am a lot stronger than they think I am.  I can deal with the solitude and isolation I once feared so much that I would do anything to avoid.  I am now in a situation I feared so much, proving you can adjust to anything.

Book on what to say and what not to say, and beware of the "miracle cure"

Listen to this excerpt from a "Today" show segment.  Letty Cottin Pogrebin is a famous feminist and co-founder of Ms. Magazine with Gloria Steinem. She has survived breast cancer.  She talks about things to say and things not to say to a sick friend, and has a new book out about the subject.  My absolute favorite line when I told a long-time friend that my long road of diagnosis had finally come up with an answer:  "Okay, so now that you know what you have, you'll deal with it" and then she followed this up with "you know, they make canes with little stools.  I've seen some old people in the neighborhood using them, and they're very cute".  I was 48 years old, facing a prognosis of 2-5 years and the last thing I wanted to look like, was a "cute" old lady.  It went downhill from there.  She followed that act with a set of emails giving me links to wheelchairs and walkers on eBay. Then, when I was dealing with the loss of my teaching career,  she dropped off a 16-page article she was required to read for her Education Masters at Queens College.  When I looked baffled she said "Here, read the article for me and summarize it.  I'm too busy and you have nothing but time on your hands.  Besides, it will lift you out of your depression and make you feel useful".  I was stunned.  The straw that broke the camel's back was when she came waltzing into my apartment one evening through an unlocked apartment door. It had been about five months since I last saw her.  She just said "hi" and sat her ass down. My aide was horrified.  "Don't you knock?" she asked.  My soon-to-be ex-friend replied, "Why?  Am I interrupting anything important?"  She moved out of the neighborhood to a fancier part of Queens and I never saw her again.  But about a year ago, I accidentally sent a blast message to all my Facebook friends, of which she is one.  She inboxed me: "It's good to see you're still around.  My teaching job is so tiring.  I bought a condo in the Bay Club and had the realtor from hell. Bye". I would do anything to have a job to be exhausted by.

There is an ALS patient who publishes a blog. To protect the author's privacy, let's call her Beth.  Well, in the course of any disease, you will get desperate enough to do anything sometimes.  Although I am following a healthy diet which I blog about in "Meat's No Treat", this is not to cure or improve my ALS.  Rather it is to prevent or help other conditions [eg. cancer, hypertension], and to take off excess weight and keep up my immunity.  The last is because ALS patients often die of infections they cannot fight off.  But Beth started blogging about a Far Eastern "practitioner" who claimed to be able to cure her with some sort of Eastern medicine.  So Beth drove halfway across the country with her husband, blogging that when she returned, she would be back to her "former life" before ALS.  I kept thinking, "does she really believe that?  If it was some miracle cure, wouldn't we all be doing it?"  There is a group of people out there who believe the medical profession is "conspiring" to keep us all sick, because they are "in cahoots" with "Big Pharma".  I subscribe to the lists of some of these people because they are believers in nutrition and natural medicine, but I don't buy a lot of their philosophies, such as anti-vaccination and avoiding cancer treatments.  And I am able to sift out the extremists, like the nut who was emailing me constantly saying he "solved ALS" , until his emails got so weird I told him I would turn the emails over to the police if they didn't stop [they stopped].  Anyway, Beth didn't get cured; instead she ended up in the hospital with some infection [probably from a weakened immune system from the car travel and/or distress at having her dream of a cure shattered].  Moral:  there is no cure -- yet, and won't be for a long time.  I am keeping myself as stress-free and nutritionally as strong as possible to prevent additional diseases, preserve what I have, and not flirt with any more danger than necessary.  Most of all, I want to stay out of any hospital !!  There are always charlatans who prey on the desperate and vulnerable.  Physicians get no nutrition training in medical school, but they have come up with cures for major diseases, with the cooperation of "Big Pharma".  It's big business and profits come before people and compassion, but that's the way it is.  There are many diseases that can be prevented by nutrition and avoiding obesity-- eg. type II diabetes and heart disease.  But once you get these diseases,  the medical profession is the only hope in most cases. 

Physical and Occupational Therapy [PT and OT]

With ALS there is a fine line between benefit and fatigue when it comes to exercise.  So for a few weeks now, I had been having PT from VNSNY [Visiting Nurse Service of NY].  Now everyone knows I had a terrible problem with VNS' home care and that is why I switched in early 2007 to Concepts of Independence, which is part of the [CD-PAP] Consumer Directed Personal Assistant Plan, which enables consumers to hire, fire and schedule our own aides.  I had a lot of trouble because VNS refused to allow my aides to fill in for each other, so every time one of my regular [trusted, trained] aides had to call out, VNS would send an aide from their pool of "fill-ins".  This usually meant I would get an aide whom I didn't know and who had no investment in me or my needs.  It's very hard to keep training aides when you cannot speak.

Anyway, VNS has good physical therapists, and this time they sent a man who worked with me about five years ago, and a woman whom I hadn't met.  The thing with Medicare and PT,  is that Medicare will not approve simple stretching and range of motion. The PT is supposed to make the patient stronger and able to be independent -- think recovery from a stroke, orthopedic surgery or accident.  Since ALS doesn't get better, it's hard to show recovery or improvement.  So just range of motion [ROM] and stretching doesn't fit the bill.  There has to be exercise.  So the PT worked me out with light weights and pushed me until I felt I was going to drop.  Every time after she left, I fell asleep for at least two hours.  I was thinking this is a good thing, because in my healthy days, I always felt tired after a good workout.  The PT said I needed to build muscle again, and she assured me she knew all about ALS.

I should have known better from this agency's nurse experience many years ago.  When I had my home care from them, I had a visiting nurse who kept calling me "lazy" and said I was "playing helpless" because I "didn't want to be independent again".  When I asked her if she knew about ALS and that it was degenerative,  she said I just wanted to use that as an excuse to have the aide do everything for me.  I had said "How much do you about my disease?",  she replied "I know all I need to know".  What followed was a letter from my dear friend [and fellow ALS sufferer] Norma Steck, to the head of the agency in complaint of that nurse, who came back with a major apology and an attitude change.  We had done the paperwork already to switch to self-directed care, so we felt empowered by all that.

I do not feel at all empowered by my new challenge with pain management.  Even though the physical therapy supervisor admitted that this new condition was due to the PT working me too hard, my neurologist is suggesting it is all a big coincidence, and tells me to take pain pills.  I want to find out what it is exactly,  and am considering asking my primary doctor to refer me for an MRI.  In the meantime,  all PT and OT has been suspended until my June botox treatment [because the most recent botox of last Friday is too soon to ask for PT again.  On to see who gives the best deal on glucosamine/chondroitin -- Vitacost, Swanson or Puritan's Pride.


Now onto researching my father's dementia and how we can slow it down.  My sister reports that his behavior grows odder and odder and more and more paranoid.  I have been putting off getting his cheek swabbed for DNA for my geneology family research.  He's so paranoid that he will think I have evil motives for collecting his DNA.  I hope we can collect it. 

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?  

This is why I don't like to make New Year's resolutions: there are so many distractions to keep me from fulfilling said resolutions.  I know I should update more often, but then I have to manage my bills, my emails, and frequent naps.  Then there are the phone calls for doctor's appointments and prescription refills.  Not to mention the doctors' appointments themselves, especially if I have to take Access-a-Ride.  If I have an appointment in Manhattan which takes a couple of hours, I am literally out of the house for at least six hours, between the cushion I allow to arrive early at my destination in the event of delays, waiting time for my return trip, and the return trip itself -- especially during rush hour traffic, and including other pickups and dropoffs.  In theory, you would think I could use my ipad to field emails and write articles, but in reality, the wheelchair tie-downs don't keep me steady enough, and the ride is so bumpy and jumpy that I can't even read.  The only thing that works is listening to an audiobook.  I am often too tired to concentrate on even that.  When I finally get home, I am pretty wiped out and often starved and need to eat something.

New Years Eve I went to the annual get-together at my friend Nancy's house.  She has a bunny rescue out of her home in Great Neck.  Most of the people who attend are rabbit-rescue people I only see once a year, which is more often than I see most people anyway.  Nancy caters in Italian food from a great restaurant in the area, and it's a low-key evening with some really nice people.  Louise drives and she used to drop me off and pick me up, but a couple of years ago, she just started staying with me.  Now she looks forward to going because the food and company are so nice.  It takes two  to transfer me into the car however, and Diane was luckily up for the task.  So she worked that night and came with us.

The weakness on my left side has become more pronounced and my latest wheelchair modification addressed this, providing guides on either side, to force me to sit straight.  And on Thanksgiving, I rode in a car for the first time in almost 11 months.  I typically ride in a car to the Walk to Defeat ALS in late September, the Rabbit Care Conference in late October,  Thanksgiving,  Christmas and New Year's Eve.  In 2012,  my team didn't do the Walk to Defeat, we didn't go to the Rabbit Care Conference, and I didn't go anywhere for Christmas.    I feel badly about not going to my family for Christmas for the last two years, it looks like the Rabbit Care Conference is a thing of the past for me, and I don't know how much longer we will be doing the ALS Walk to Defeat.  In the best of times, people move on.  The problem with a disease like ALS [especially when there are speech issues] is the opportunities to bring new people into my life, are slim to none.  I noticed when I rode in the car Thanksgiving and New Years Eve, that I lean to the left, without the benefit of the guides I have in my wheelchair.  So I have to sit against the left end of the back seat, or devise some kind of stiff pillow or wedge to hold up my left side.