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."

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........


Webster said...

I'm impressed. You explained your situation extremely well. Good luck selecting the best device Medicare will provide for you.

Tracy Boettcher said...

I just stumbled upon your blog, and plan to read on and catch up. I was diagnosed with ALS on March 15 of this year and been posting my experiences on a blog I started up in July. I invite you to check it out. I suggest starting at the beginning (July 13), skipping anything boring. Thanks, comrade in arms, I'm yet a private in the ALS army. als-whaticantellyou.blogspot.com

Amy said...


Love your blog so far, but just started on it. My husband Tracy thinks it's GREAT! and enthusiastically recommended that I read it. See above comments from him.