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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.

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.

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........

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!!