Thursday, December 1, 2011

RIP MacBook, and how do you dispose of a wheelchair?

I really meant it when I said I would update more often. But, as the saying goes "We make plans, and G-d laughs" Or, as I like to say, I am having really bad karma. It's as if some witch or voodoo queen has put a spell on me. To summarize, I have a brand-new wheelchair with one footrest, an old wheelchair stuck in full incline-- from which I had to be carried out -- taking up half my hallway, which I don't know how to get rid of, and a MacBook that just decided to die on me. The good news is that I have an iPad with a keyboard, that does about 80% of what my laptop did; the other 20% are pretty important, but I have found alternatives for most of those things. Where the hell do I start? I'll start with the laptop. I know eventually I need a new one soon. If you're a Mac person, it had a Leopard Operating system, and since then we have Snow Leopard, and now Lion. ButI wanted to wait until next summer when my home equity loan will be paid off and more credit will open on my reedit cards. I didn't want to open another credit source, nor did I want to try to increase my credit card limit -- which I am not sure they would do for me anyway. I don't have extra money to be buying a $999.00 laptop. I don't know if I ever will, in reality. So it took me a while to load the right apps on my iPad to be able to do some of the things I needed. I will bring my laptop into an Apple store after the new year, when I don't have to deal with holiday crowds. But I felt so discombobulated for a few weeks, because I didn't know how to do a lot of things on the iPad. Now it's my best friend, especially since the therapist at NYU/Rusk Institute got me a grant that paid for an upgrade to my Verbally speaking program, and a case with a bluetooth keyboard. Bless them! I wish I could say positive things aabout my wheelchair, and the wheelchair vendor. The name of the vendor will not be published here. But if you aare in the market for a new wheelchair, and trying to decide between vendors, please email me privately and I will give my opinion. Anyway, my footrests are a different style than the ones I had before. So getting on the Access-a-Ride lift was a challenge with a learning curve. The second time I was boarding, the footrests [they are separate for each foot this time] got caught up because I didn't tilt back far enough, and the right one broke off. You see, the only way I can board is to move up, tilt back a little, move up further, and tilt back. This is the only way the lift will work, because it's the only way to clear the yellow lines on the lift. So I emailed the wheelchair company, and told my rep what happened, and after a week I heard nothing. So I emailed again, and that day I got a call from the repair department, whoo said they would have to order a new footrest. That was two weeks ago, and as I write this, I am emailing unsuccessfully for an answer. I have a friend calling them by phone, but I haven't heard anything yet. I suspect they are playing phone tag. Oh, and the Purple Communications i711 relay calling I use, has an iPad app, but it's a bit "facocked" [sic], which is Yiddish for "messed up". Some iPad apps are better than on the Mac and some are not so good. So in the meantime, I still had the old wheelchair. I had called a certain ALS organization to donate it, but the person on the other end [again, no name] never got back to me [it's a freakin' epidemic around here -- nocallback-itis --]. When I called back this person after a week, he acted like a total knucklehead, saying that I probably ran the battery out after so long, and I had to recharge it for two nights in a row and make sure it was in perfect running order before they would take it. I reminded this less-than-professional poop-brain that it was HE that let my wheelchair battery run out by never calling back, and that I was trying to make a DONATION, not ask HIM for a favor. When I got off the phone, I thought "Now you're getting BUBKES [Yiddish for "nothing", "zilch"] and decided to go back to my original plan of selling it. Okay, so the next day, I lose the footrest on the new wheelchairm so I marvel at the good fate that the old wheelchair was still cluttering my apartment. I charge it up and it works perfectly -- for one day. I was all inclined back, relaxing my muscles and taking the pressure off my back. This break is so necessary for a wheelchair user, and also raises the feet to prevent swelling and aids in positio=ning because the gravity pulls the body back and eliminates the need for someone to pull the wheelchair user back [which is dangerous to both puller and pullee]. So there I was all relaxed in the old familiar wheelchair,, and when I tried to go back to a sitting position, the wheelchair would not budge. I have had this problem before, and the wheelchair vendor has taken it away twice to repair it and claimed it was all fixed. The two aides who were overlapping at a change of shift, had to do the risky move of lifting me out, and dropping me on the bed. The old wheelchair is still sitting there, waiting to be "junked" because this is not something that can just be put out on the curb to be picked up with the garbage-- at least I assume not. The wheelchair company will not take it, and won't answer my emails about what to do with it. And nobody seems to know. In a 400 square-foot apartment, a wheelchair in a perpetual incline position takes up a lot of apace, along with my other equipment, including the portable shower. Nobody wants it, and nobody will tell me what to do with it. And nobody will want to wheel it o=ut in manual mode.

Tuesday, November 8, 2011

Why I Stopped Ingesting Artificial Sweeteners and Processed Foods

Boy do I wish I paid more attention in Biology class.  I love reading the news from the MDA and ALS-TDI research front, but there's not much this scientifically-challenged brain can do with it.  Right now, I am operating on a hunch that disease progression is triggered by stress and exposure to toxins, so I have eliminated a few things from my kitchen, and even from the restaurant table including [but not all-inclusive] and as a disclaimer, 99% of the time.  Sometimes I might indulge as a "treat" but often feel crappy later.  Whether feeling crappy is a real revolt of my digestive system, or ust in my head, doesn't seem to matter.  If feeling crappy is a reminder that my indulgence is a bad idea, that's enough.


artificial sweeteners -- anyone who knows me more than 3 years ago, knows that Diet Coke, Equal, and any kind of beverage or food containing any kind of artificial sweetener was synonymous with my name.  If I wasn't the single reason Diet Coke made profits, I sure wasn't hurting their business.  Not one Diet Coke, Diet Snapple, packet of Equal or Sweet and Low has passed my lips in probably 18 months.  Warnings from loved ones fell on deaf ears until then.  What I love is when I express this at a support group, the attendees all ask "Are you getting any better?"  No, you boob.  But I haven't been getting worse. And no, I don't know if I would have gotten worse if I continued to ingest that poison, but it's not as if I'm doing something BAD for my body.  This is something I should have done a long time ago.


Processed foods -- no frozen Lean Cuisine or Smart Ones or any frozen meals from the freezer section of the supermarket.  Not only are they high in sodium [I have high blood pressure] but they contain other stuff most people can't pronounce.


No meat, especially red meat or deli meat.  I confess to having a barbecued hotdog at the ALS walk in Long Island and another one at a church BBQ I was invited to in July, but that's it.  A visit to Ben's Best recently didn't even convince me to cave in to that overstuffed pastrami sandwich.

I've substituted soy milk for almond milk with my cereal and in my smoothies because soy promotes estrogen, which causes breast cancer, of which I am high risk.  All I need on top of ALS is breast [or any kind of] cancer.  


I have actually had people say to me "You're dying anyway, so why not eat anything you want?"  And my answer is "I don't need to have a stroke, heart attack, cancer or even an infection because it will be that much harder".  Most of the people who I know who have had ALS have died from complications of some kind of infection, so why not protect myself?


As for scientific advances, the recent news has involved the mutation of the SOD1 gene.  That is not to say that ALS is necessarily hereditary -- only about 10% of all ALS cases are familial, and the rest are sporadic.  I have learned that ALS is prevalent in families with a history of Parkinson's Disease, and I have PD on both my paternal and maternal sides of my family.  As far as I know, my dad's paternal grandmother and paternal uncle had PD, and my mom's deceased brother had it, and one brother who is still alive fights PD at age 85, but still travels between Oregon and California to visit kids and grandkids.   


For those scientifically-minded, the latest research article from MDA talks about astrocytes' role in ALS and I provide a link to that article here.  And here is another very good article about why scientists are finally not only concentrating on motor neurons anymore.  Astrocytes are star-shaped [hence the "astro"prefix] support cells that usually protect motor neurons.  However,  when those astrocytes carry the SOD1 mutation, they cause neighboring motor neurons to deteriorate and die.  Scientists have replicated this process in lab mice.  What do I do with this information?  All I can do is hope that this discovery will lead to a cure or more effective treatment.  In the meantime, what caused MY SOD1 mutation?  Did the artificial sweeteners or the processed foods I used to consume every day do it?  "Who the hell knows?" as my dad would say.  I have been a klutz since childhood so maybe I have had SOD1 genes in the womb.  Again, who the hell knows.  All I know now is that if anything has the potential of causing any more damage, I really don't want to consume it.

Wednesday, November 2, 2011

Part 2 Aug-Comm Eval + Independent non-chain restaurants in Rego Park, Queens

Independent non-chain restaurants in Rego Park, Queens

Read my latest article!!

As for the second part of my  augmentative communication [aug-comm] device evaluation, at Rusk Institute,  this time I met with Hollie Cohen who does the actual evaluation for the machine.  First we looked at my iPad, and she saw I had Verbally downloaded as a free app.  This is a program developed by two Indian brothers for their mom,  who had lost her speech due to ALS.  This program is even better than my Mercury.  Verbally has word prediction like the Mercury, which means that, when I start typing a word, the machine comes up with possibilities of words that it thinks I want.  But Verbally goes one better:  when I type a word, it comes up with options which predict the NEXT WORD.  Example: I type "I" and it gives a word choice "am", Or I type "supposed" and it gives me "to" and "that"..... really amazing.

There was one big problem with "Verbally" and that was the voices.  There were very few choices, and it was so soft and low that you could hardly hear what the machine was saying.  So I have been using it and people have been reading my messages.  Not the best way to use a speaking device,  but I love the portability of the iPad, and of course, when I am out on the road and on Access-a-Ride, I can read my email, play games, and otherwise amuse myself.

So when I met with Hollie, I expressed my frustration at this shortcoming with Verbally, and she showed me her version [on her iPad], which had been upgraded for $100, and it had different voices, which had a higher volume we could hear, and the capacity to program phrases which could be saved.  She also showed me other apps which were cheaper, and better than the free version of Verbally, but not as good as the upgraded Verbally.

On another subject,  I often say that nobody knows or cares about accessibility until someone close to them becomes disabled, or someone like me fights for accessibility, as I did in my co-op.  Before 1990, businesses and public places were not obligated to provide accessible entrances, restrooms, etc.  And I can recall being at travel agent functions after 1990, and listening to travel agency owners whine and moan about the expense of putting in a ramp, or making other accommodations to make their businesses accessible.  My friend Louise learned through knowing me, how important accessibility is, and became concerned about the lack of a ramp at her church -- St. Luke's -- in Forest Hills, Queens, so she set the wheels rolling a few years ago to build a ramp.  They had to pass through the local organization which governs the historic area where the church is located,  and of course draw up plans with a contractor who was familiar with accessibility.  Luckily they didn't have to raise the funds because someone had left money to the church after her death.  So this week, they began to build the ramp, and Louise is relieved.  They don't have to wait until someone sues the church.  They know the worshipers are not getting any younger.  My point: if you own or are involved with any kind of establishment, make it accessible.  It's the right thing to do.  And people with disabilities should be independent, and not rely on someone else doing everything for them.  People with disabilities are out of the house and in the community, and should be able to patronize every kind of establishment.

Friday, October 14, 2011

You know what my problem is?  Okay, okay, I can almost hear the one-liners:
"How much time do you have?"
"Call my therapist"......  okay okay
Or "Don't you mean problemS?",
My problem is that I almost don't want to update too often because I don't want my subscribers to say, "oy vey, not again".  So instead of saying "they can always hit the delete button", I wait until so much time goes by and I have so much to say, that it gets overwhelming and I have so much to say, that I don't know where to begin.  Then I get emails from my buddy Maddy, telling me to get my fingers on the keyboard.  And, I read an article this week about good blogging practices, and the cardinal rule is to update often and regularly, so I believe in good practices.  Therefore, blogging more often is what I must do.

As usual, there is so much going on.  So I will talk about assistive speaking devices. Since it's been five years since I got my Mercury®, I can apply for a new speaking device.  I say "apply" because Medicare says you can have a new device every five years, but it's not a given.  You still have to go for an evaluation, and the evaluators have to write a letter of medical necessity.  In other words, they still have to convince Medicare that you need a new one.

So I went to Rusk Rehabilitative Institute at NYU Medical Center.  They're the best!! I recommend them.  I hope you will never need their services, but if you are unlucky enough to need rehab from a stroke, brain injury, accident, or whatnot,  Rusk is top-notch, along with the Hospital for Special Surgery of course,  in Manhattan,  Helen Hayes upstate and Kessler in New Jersey [this is for NY/NJ].  First,  an evaluation by a speech pathologist.  This is not just to determine that you can't speak,  but to verify that you're in your right mind.  I guess if they find there's too much dementia or other cognitive difficulties,  the speech machine is moot, because you'll use it to say crazy things, or forget how to use it.  That's just my guess.

Rather than talking about how insulting and condescending the line of questioning is,  I just cracked up laughing, which caused the pathologist to finally say "I know these questions might seem silly to you, but just answer them."

Examples:
What weighs more, a pound of nails, or two pounds of nails?
Do you use a hammer to cut paper?

Anyway,  also the pathologist asked me to talk,  I mean really talk.  And when I did,  she said  "Why don't you use your voice?  When I look straight at you, I can understand you."

"Well",  I told her,  "First off, you are a professional.  Secondly, as much as I tell people to look straight at me, they don't.  Mostly they look the other way, and impatiently say 'I don't get you. Write it down'.  Also, I have one aide whose English is bad,  and even when I write it down,  she doesn't get it.  Even when my other aides speak to her in English,  they want to strangle her in frustration.  And then there's the voice.  Its raspiness scares people.  And then of course,  there are the people who assume I am mentally challenged, and either turn away and talk to my aide,  or run away altogether, or talk to me as if I am a baby.  People are generally impatient and lazy.  They just don't want to try and make an effort.  It's a sign of the times.  And it frustrates me to deal with it.  It's also hurtful when people look away and wave their hands at me and say 'Write it!'.  The undercurrent of that gesture is 'I don't want to deal with this' or 'I don't have time for this'".  Frankly,  able-bodied people -- unless they are professionally trained to deal with people with disabilities -- don't want to be bothered, or don't have time or patience.  Or are scared,  threatened,  or freaked out.  So I adjust to them.  I have no choice.  When I am out in a group of more than two [there are a few exceptions],  I am simply an observer.  The other people talk and I listen,  and am rarely a part of the conversation.  If we are out for a meal,  they ask me what I want to order, and that's the last thing I "say", unless I wave my arms like a crazy woman to get noticed, and type on my iPad,  or assistive communication device, or write on my Magna Doodle erasable board.  My iPad "Verbally" app has a little bell I can ring when I want to "speak" which is funny, because when I ring it, everybody looks around all confused like "Do you hear a bell?  Where's that coming from?"

Anyway, the speech pathologist has determined that I not only need -- but can also benefit from -- a new assistive communication device,  so my next stop is the Assistive Device Coordinator who explores with me the appropriate device to order.  Stay tuned........

Thursday, August 11, 2011

So Many Issues; So Little Time

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

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

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


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

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


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

Peace to all!!

Saturday, June 18, 2011

What Do I Do To Fill My Time?

First of all, I would be honored if everyone could check out my new publishing platform, called “Yahoo Contributors Network” and read the first entry I have published on there called “Ode to a Woman Un-Liberated”. It's a tribute to my maternal grandmother, Fanny Triebwasser Vogel, whom I never met, because she died about seven years before I was born. The loss affected my mom deeply, and from everything I heard about her, I wish I had known her.  She was only 50 when she died of breast cancer in 1948, in the days before mammograms and chemotherapy.

Time flies so fast that I’m baffled when so-called well-meaning people ask “How do you fill your days?”, or “What do you do with your time?”.  Even as a child in non-techno times, when children’s television on weekends ended in late morning, I can’t recall too many times when I complained about boredom.  Yes, when the cartoons ended on a Saturday morning, I would turn to my mom -- especially in bad weather when I couldn’t go outside -- and say “M-a-a-a, I got nuthin’ to do today”. Since the only suggestion she could offer was  “Why don’t you bang your head against the wall a hundred times?”, I just stopped trying to get her to commiserate with me.  You see, in the 50s and 60s, moms cleaned the house every day.  I don’t know why they did this, especially in a 4-room apartment, but they did.


When I grew up in the “Projects” until I was twelve, I could always knock on the doors of the many children in my building and ask someone to come play.  Often we played in the hallway to get out of the way of our moms, who were cleaning house.  If the weather was clement [is that the opposite of “inclement”?], we were outside.  Even when it snowed, we were outside building snowmen, having snowball fights,or otherwise playing in the snow.  When we needed to warm up, we went inside the building for a while, but never in our apartments unless we had to use the bathroom. And, even then, we’d better be just seconds away from peeing or soiling ourselves, because our moms didn’t want us upsetting the routine by sitting on the toilet too long.  I don’t know if any apartments in the projects had two bathrooms -- maybe the larger apartments in the “double buildings”, but at 3677 Nostrand Avenue, every family had one bathroom. And if you were unlucky enough to use the toilet after your mom cleaned the bathroom, she got angry with the timing.  “NOW you have to go to the bathroom?!  I JUST cleaned the toilet!”.  I never understood this, because eventually the toilet had to be used, but after I went, she cleaned the toilet again”

Anyway, I always had the set of World Book Encyclopedias, and I deided it would probably take me forever to get through all the volumes from A-Z, so when the TV ended for me, and the weather was not conducive to going out, and I couldn’t find a friend available, there was always the World Book.  I started with “A” and I don’t remember what letter I got through, but I never got to “Z”.  My sister and I still joke about watching “Wide World of Sports” and there was always some old movie on. My mother would look up from her cleaning, as we checked the TV Guide [there were only channels 2.4.5.7.9.11. and the educational public-TV channel13], and when we said the name of some old movie, often she would say “Ooh girls, that’s a good one. Watch it!!”

So these days I take those memories and apply it to modern times.  I am on the computer most of the day, going through activist types of emails, and signing loads of petitions.  Sometimes I am writing articles or poems, reading books in my Kindle, or watching something on the TV.  I now have over 1000 channels, and more TV programs to watch on the computer, not to mention games to play.  What do I read?  Right now I read a lot about nutrition, and I have also downloaded a lot of books for free on Amazon.  I have a lot of books on various eras in history and I want to brush up and review the science I so hated  in middle school and high school.  So I have a bunch of reviews in biology, chemistry, and even neurology.  I have changed my eating habits.  I was out with two friends last Saturday and one of the women put her French fries in front of me.  I didn’t take one, so the other two women shared them.  I had a sandwich, and enough bread to satisfy myself. Inside the read were tomatoes, fresh mozzarella [I rarely take in any dairy anymore], and basil. My diet consists of mostly raw foods that come out of the ground.  I don’t eat meat, I do eat fish like sardines, salmon, and herring to get the calcium and omega-3, and I pick my vegetables according to what nutrients I want to have.  Tomatoes for lycopene, mushrooms for vitamin D [I just learned about this], sunflower seeds for vitamin E, turmeric and chia.  I add other things from time to time like avocado, berries, broccoli, etc. 

So thanks for asking, everyone.  I have no problem filling my time.  Most nights, I’m lucky I have an aide to remind me that it’s time for bed. Otherwise, I would probably never get in bed.  Knowing you have limited time on this earth reminds me of all the time I wasted, especially with stupid relationships with men and women-- friends and other more intimate pursuits -- that I tried to keep together when they weren’t working anymore.  I have wasted so much time in activities that would lead nowhere, and especially in jobs that meant nothing besides a paycheck.  I wish I would have worked harder in science class. I wish I wouldn’t have wasted so much time.  I want to learn anything I can. I have downloaded on my Kindle a lot of free books on subjects I have long forgotten  -- everything from world histories to reviews of biology, chemistry, neurology, and nutrition. If I lived to be 100, I would not have time to get through all this.  

Thursday, April 7, 2011

Budget Cuts Will Hurt ALS Patients

So I feel like I can breathe again.  My friend Maddy finally poured a bucket of freezing water in my face, as she always does when a lot of time lapses between blog posts and yells at me [in capital letters, of course] "GET YOUR FINGERS ON THOSE KEYS!". I just lose  track of time. So much to do in a day, and I get fatigued, so I have to take breaks and naps.

I was as committed as ever,  to helping out the widespread effort to get in our legislators' faces to oppose NY State's Governor Cuomo's "Medicaid Re-Desgn Plan" and the part I was most concerned with, was the threat to the CD-PAP [Consumer-Directed Personal Assistant Program].  Briefly, the CD-PAP is a system whereby the client/patient ges to hire, fire, and schedule her own home care staff, and each week submit a time sheet to an agency [mine is called "Concepts of Independence"] which administers payment and benefits -- medical insurance,paid vacation, and sick-time as well as holidays for the aides.

As those of you know, who have followed from the beginning of my blog on Caring Bridge, I had nightmarish experiences when I got my aides from the largest home-care agency in the country, the one whose commercial tagline is "We bring the caring home".  For those of you who don't know, or forgot, let me recap.  I had aides who snored so loud, my apartment shook, and I was robbed of money, a brand-new digital camera [which has never been replaced since 2006], and other things.  When I complained to the agency, I was told there was nothing they could do, because I didn't have proof.  Then, I got four aides I really liked, who became my regulars.  However, when one of my regulars became sick or went away, the agency refused to let one of my other regulars fill in.  They insisted they had a team of aides who did fill-ins, and they would get "mad" if they sent one of my regular aides to fill in.  Absolutely no concern for the patients' [my] well-being and comfort. So ever time one of my regulars took off, I had to deal with an aide who didn't know anything about my disease.  One called her office within full earshot of me, yelling at her supervisor "Don't ever send me to this patient again!  She's too much work!"

And the nurse they sent every week!  Aside from telling me that I wasn't working hard enough at getting better [huh?] and "playing helpless", she began to tell me every week "I am having trouble finding a long-term care agency for you.  No one wants to take your case because it's too difficult and you are lazy.  You should be better by now". One day I asked her "How much do you know about my disease?", to which she responded "I know all I need to know".  When the agency called me and said I was harassing the nurse and they would have to change my aides, I could take it no more.

My good friend Norma, who has ALS and was a nurse at St. Luke's Hospital for more than 30 years, happened to now the head nurse at this huge agency, wrote a scathing letter, and I received apologies from the aide supervisor and the nurse.  But I had already filed my application for my case to go to the CD-PAP, which was finalized a couple of weeks later, to the shock of the agency.

We must preserve the CD-PAP! It is a freedom of choice that is so indispensable to people with disabilities, and especially for ALS patients.  ALS is such a misunderstood disease, about which so much of the home care, nursing, and even medical establishment is so ignorant.  It is so essential that ALS patients be able to fire, hire, and schedule their own aides.  We need to train a team of aides about our needs and the idiosyncracies of our condition, and not have to deal with different and unfamiliar people all the time.

If your state doesn't have a CD-PAP, we must all fight for this important system.  And now I am engaged in letter-eriting and emailing and social networking in another fight.  On a national level, we must fight the effort to eliminate Medicare for people with disabilities and replace it with a voucher system, and to eliminate Medicaid altogether.  If you are not already my friend on Twitter and/or Facebook, please connect with me.  In the coming weeks, I will send updates to Facebook and Tweets to Twitter about NY's fight [which is not over yet] and the national situation [which is only just beginning].  If you are already on home care, you will be scrutinized.  ALS patients have more hours of home care, because we need it.  There are recipients who don't need the hours they have, and tons of abuses.  They should leave ALS patients alone.  I am told they will be very closely looking at issues like caregivers living with patients, and patients living with family members that Medicaid deems should be caregiving.  We all know how unfair this is.  It is extremely intrusive and taxing for some family members to be taking care of ALS patients while trying to live their own lives.

I can guarantee that a voucher system will not work, and will force ALS patients to sacrifice essential things like equipment and specialist's visits.  We must fight along with ALSA and MDA.  If you are in NYC, get on the Yahoo group DNNYC [Disabled Network of NYC] and, if you can, go to monthly meetings of DIA [Disabled in Action], because we need a bigger presence in the larger disability advocacy movement, which encompasses everything from mental disabilities and ADD to blindness and deafness, as well as other muscle diseases.  

Wednesday, February 23, 2011

New Developments/Eating Healthy

Firstly, Some good friends from my ALS group lost their relatives to ALS recently.  S. and D.  lost their brother who lived in New England.  Their brother was a creative person at a multi-national toy company, and had a six-year-old son, and three-year-old twin boys, who were born just after he was diagnosed.  This family was so devoted to this young father that, even though the siblings live in New York City and their parents in Duchess County, at least one member of the family went to New England every weekend to see him and his family.

Then maybe two weeks after I heard about this passing, I received the sad news that another friend from my Beth Israel ALS group lost her mom to this disease.  M. was so dedicated to her mom that she went from Manhattan to Brooklyn at least one day every weekend. These two families were held together by their Catholic faith and familial cohesion. It's true that ALS is a family disease, because it affects the whole family.

I am still eating a healthy diet.  For breakfast, I have stopped the Carnation Instant Breakfast [now I think they call it "Breakfast Essentials"], because it is chock full of sugar, despite providing many vitamins and minerals. I now eat a whole-grain type of cold cereal with soy milk.  By the way, people who are vegetarians, or anyone who does not eat meat every day, need another source of vitamin B12.  I found out that soy milk is fortified with B12, whereas almond milk is not.  I stay away from dairy because of lactose intolerance, and what I have learned about the dairy industry and its cruelty to cows, which I won't go into here.  I don't want to shove animal rights down anybody's throat.  You can also get B12 from yogurt, cheese, and other fermented products, like sauerkraut or kim-chi. I don't drink milk, so fortified soy milk is essential for me.  And certain cereals and breads are fortified with B12, as are several products made as meat substitutes for vegetarians.  And, if you are a carnivore, you are getting enough B12.

Which brings me to the next challenge -- Vitamin D3.  Especially for post-menopausal women, but for all human beings, we need Vitamin D3 for strong bones and other organs.  Lately, most of us are not getting vitamin D from the most reliable source, which is the sun.  If you don't live in Sydney, Australia, which has 340 days a year of sunshine, you are probably deficient in vitamin D, unless you  
get 20-30 minutes of sun every day and don't use sunscreen.  Yes, the reason we are not getting enough D from the sun is that we have been so scared of skin cancer -- as we should be -- and use so much sunscreen or sunblock, that we don't get the sun on our skin.  So we need to take it in supplements or get it in fortified foods.  The importance of Vitamin D is that it works with calcium to keep our bones strong.  It's not enough to get the calcium alone.  And for women, it is so important to prevent osteoporosis.  For me this is so important, because even in the summer,  I don't get out as much as I used to, for various reasons.

I have read about the supplement Spirulina [blue-green algae] showing promise for ALS mice, so I bought a bottle, but lately I have been also reading that these same scientists who did this research on the mice, don't know if Spirulina can be harmful to humans. So, I'm taking it very cautiously.

Since most ALS patients die from complications like infections and pneumonia, I look for anything which can slow down progression.  In the 70 years since Lou Gehrig died, there is only one drug [Rilutek/Riluzole] which is supposed to slow progression and only add about three months to our lives.  Whenever I hear of an ALS patient surviving a hospital stay, due to pneumonia or other infection, he/she always comes home with worsened ALS -- that is, IF he comes home.  I look at it this way -- good health and especially a strong immune system, won't cure ALS, but it will help me keep infection away, or help me fight anything I get.  It's the only defense we have.

Writing a book is harder than I thought, especially in my situation: a studio apartment with an aide, and the television going most of the time.  Luckily, my daytime aide goes shopping for groceries in the morning, and I have some quiet time.  And often in the afternoon, she goes in the kitchen and reads for about an hour, so I sneak in a little writing time then. But it's so hard for me to put together the chapters.  I never really took a course in writing a book, so I have no knowledge of book-assembling technique.  I'm doing the best I can, because I don't have money to take online classes right now.

Will eating healthy and vegetarian cure my ALS?  Of course not.  But I need to drop weight and get my blood pressure down.  Losing weight is so difficult when I can't really burn calories.  I keep hearing at my support groups that ALS patients need to take in more calories, because we burn calories faster.  Whoever came up with that has never met me! Why isn't that true for me?  In the first couple of years of this disease, dieticians and doctors told me "Eat whatever you want, and eat a lot", so I did!  And now I'm overweight and suffering from high blood pressure for the first time in my life.  Oh well, I keep trying.

Sunday, January 16, 2011

PEG --Get It Early? and Other Info About the Notorious "Feeding Tube"

So they tell you to be ahead of the disease. To get everything early, to be prepared.  In some cases, the suggestion comes too late, because of faster progression than expected. For some, the advice comes too soon and freaks out the patient.  I recall a lady at our support group who was told by the facilitator, make sure you order your equipment before you need it."  The lady, who had been recently diagnosed, and had walked into the room using only a cane,  looked surprised, and asked "what equipment do you mean?".  The facilitator answered "motorized wheelchair, bedside commode, Hoyer® lift -- you know.....".  Apparently, the newly-diagnosed patient didn't know, and this information came as a shock, for which she probably wasn't ready.  And it's so difficult while you're walking, to picture yourself in a wheelchair, and even more difficult to think about a feeding tube while still eating solid food, and swallowing with no problem.  And since it's optional, many patients agonize over whether to get a feeding tube at all.  Unless you know exactly what a PEG tube looks like, you have scary visions of people flat on their backs with any number of tubes coming out of their bodies.

The truth is that a PEG tube is covered up with clothing and, if you can adjust to large tops, especially those peasant-ish tops which are ample in the front [for women] or nice roomy polo tops [for men or women], nobody will ever know you are wearing one.  And -- here is the one that most people are misinformed about -- if you are able to eat by mouth, you don't have to stop when the feeding tube is put in.

So I had my first feeding tube put in September, 2005 because I kept hearing "Get it while your breathing is still okay, because the lower your FVC [forced vital capacity] is, the more risky it is to go under anesthesia.  So on the advice of my ALS neurologist and the Speech and Swallowing Pathologist, and the Dietician at the ALS clinic, who determined that I was progressing very quickly, and so I needed to get my feeding tube early to be ahead of a time when I would not be able to swallow at all.

By some miracle,  about three years after my diagnosis [early 2007],  I reached a sort of plateau [for which I feel very fortunate].  Well, by mid-2009, my four-year-old PEG started to get soft and weak, and leaked a lot.  I had it replaced in September of that year.  But that replacement was never right.  The tube site continued to leak and the stomach acid that came out, burned the skin surrounding the site, and it was a big painful mess.

Then the tube fell out in March of 2010.  I went to the local emergency room.  The local hospital here isn't my favorite, but it's not terrible.  I just didn't have a great time there when I fell and broke my wrist in March, 2004.  I stayed overnight at this hospital when I had orthopedic surgery on the broken wrist, and thought the nursing care was -- not very caring.  And my trip to the emergency room a week before, when I first shattered the wrist, was nothing short of disastrous.

But the local hospital, which had been absorbed by a large system of hospitals, did a lot in five years to improve its ER, and when I went in March of last year, the waiting time was much shorter and I was in and out within three hours, as opposed to the 6+ hours I was there when I broke my wrist 6 years before.  I knew something was very wrong and went to different GI doc than the one who had put in the new tube 6 months before.  As it began to get worse with stomach acid really eating away my skin, we decided it had to be done again, but this time in a whole different place.

In September, the tube fell out again.  Again, a trip to the local ER, where they replaced it, and every time it was replaced. they insisted on taking an x-ray to see if it was placed well.  So, when I was getting dressed three weeks after that [third time in 6 months], I called the new GI doc and we both decided to just let the hole close up since we weren't going to use that hole anymore anyway.  Besides, I was not crazy about more radiation on my belly.  Stomach cancer I really didn't need, and I was araid any more radiation would give me another dreaded disease.

The first week of December, I went under anesthesia again to have a whole new hole made and a new PEG tube put in.  So that's where I am right now, with a new PEG in a new hole, slightly higher and to the left of the old hole.  But that five-year-old hole is not closing up as fast as they said it would.  So it still leaks out stomach acid, especially when I eat spicy foods -- which I love.  And it makes a very socially-unacceptable noise.  it sounds like my stomach is laying a big long fart!. Or it sounds as if my stomach is a big balloon that is deflating.  It's extremely annoying, and it hurts. Christmas and a blizzard, and now two more snowfalls have gotten in the way of my followup appointment with the GI doc.

Did I get the tube too early?    Maybe in retrospect I did. But it's so hard to know.  At the time I got the original tube put in, I was progressing quickly and we were afraid my breathing would deteriorate and cause a problem.  And the last thing anyone wants to do, is to have surgery on an emergency basis, even a minor procedure like PEG tube placement [a 20-30 minute surgery].  So who's to know?  Because we have no way of knowing the progression of the disease, we have no way of knowing how early is too early.  But my best advice is still to get it early and don't wait until you end up with aspiration pneumonia, when it becomes a life-saving measure.  And if you get it before you need it, you can still eat by mouth and practice putting fluids in the tube, especially if you need to hydrate.  Then it won't seem so foreign and scary when you have to use it as your sole method of getting nutrition.