It’s Voting Time, Yeah or Ney

Here’s a little tidbit for the current voting haze of  today.

The last election, my vote did not count.  I know this because a month or two after the election, I received a letter stating as much.  They rejected my vote, because my signature was not the same as the one I used when I first registered to vote.  This was not news to me, as my signature is never the same  due to having Cerebral Palsy[CP}  Developing my own unique signature was never in my scope of functions.

I discussed this fact with the election’s officer upon registering.  At that time, it was acceptable to make my mark, and then have someone sign witness by, followed with their name.  i was never 100 percent certain if it had to be the same person who helped me register.  I assumed it wasn’t the case, since I’m never with that person; and they have actually moved out of the state.

When I got the rejection letter, the first thing that crossed my mind was that I wasted a lot of time studying the measures.  It takes detective work  to decipher any hidden meanings.  I think the  writers of the measures quite often try to make them sound so convoluted to get us to vote one way, when in reality if the measure was written clearer, there’s no way people would ever vote for half of what’s on the ballot.  Half the time I’m scared of voting for something I’d be opposed  to, that I almost would rather skip voting.

Then I was mad they rejected my ballot. i started thinking what if the person tallying my ballot didn’t like the way I voted.  What’s to stop them from looking for any loophole to discredit my vote. and found it in the discrepancies in my signatures.  My imaginary conspiracy theory is working overtime here.  I don’t know the rules for counting the ballots once they reach the elections office.  However, I do think that over time people’s signatures do change from a list of different factors.  In that vein, there should be an easy way to indicate rather or not someone is authentic, instead of rejecting ballots because there is a discrepancy.  So what if it takes an extra month to get everything sorted  out.

So, this election I am determined to make my ballot count.  One of my PA’s suggested I take my ballot to the bank I use, and have a notarization done on my ballot.  When we called to set up an appointment, they said they didn’t notarize ballots.  They suggested calling the City Clerk; the City Clerk suggested calling the Elections Office.

We completely flustered the Elections worker by explaining that my last ballot wasn’t counted because of a problem reading my signature, and I wanted to make certain  my ballot was counted.  She said something rather snarky like I needed a signature stamp.  She then hastily ended the phone call. [Maybe she just didn’t fully understand our question.]  We called her right back, and asked if I could go to the Elections Office, and sign my envelope in front of some credible person  there.  She basically said I needed update my signature  each voting period.   So, I will do that with no complaints.

If you find any ballets in this post, rather then ballots, know that I would prefer being at the ballet than blogging about ballots!

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Two Minutes For Her, or six Feet Under For Me

I knew what I needed; what would be best for my needs, and my request was ignored. Why do people think they know what is right for you, and ignore your pleas to the contrary?

In November, I received my new power chair, after a lot of hold ups; mainly from the doctor. When the wheelchair technician delivered the chair, she just made a few adjustments to the seat, saw me drive the chair, watched my back end fishtailing which knocked over the TV tray/table, and asked me to sign the paperwork.

I asked her to slow down the turning speed; the chair is a mid-drive power chair, which means it can essentially turn on a dime. With no adjustments, and “Hello, my CP!” Does a spastic body and a uncontrollable power chair sound like a perfect fit?  Heck no!  The chair easily went into tailspins. The technician wanted me to try it for two weeks, and she would call and check to see how I was doing.

I should have put my foot down and insist she adjust the speed it turns, because it was just way too squirrely for me! Whenever, I went into a store, I was afraid I would swerve unexpectedly and wipe someone out! Last week when I was driving up the ramp at church; I was going along perfectly, when suddenly I veered off to the right and crashed into the rail. (My body just twitched or something, and my path took an odd twist!)

When crossing the street after the crosswalk light said to go; it always took about 3 to 4 seconds to get my hand on the joystick and gain control of the chair, and by that time motorists assumed I wasn’t crossing after all, and would start turning just I began to move. I strongly feel the technician put my life in danger by not doing as I asked. AND, She never did call to see how I was doing!

Finally one of my personal assistants called the wheelchair provider and asked them to come by to adjust the turning speed of the chair. A different technician came. He listened as we described the difficulties I’ve experienced while driving the wheelchair. The programming took all of two minutes, and then another five minutes while I got in and test drove it. Oh my goodness, it feels like a completely new chair! No more fishtailing. I can actually start to drive forward from a stop, and not start to immediately turn into circles!

How hard would it have been for her to just program the wheelchair when I asked? It would have saved me a lot of grief and anxiety. It would have saved on time and gas for the wheelchair company. I thought the costumer is supposed to be always right. Maybe the technician thought I could master the squirrelies, but why waste my efforts when the problem was fixed by some minor fine tuning. I wonder how many costumers have had similar experiences. I know of at least one friend who has had an issue with their new chair. She should be written up.

Like some people, I think the she-technician wanted to lord some power over me! Maybe she had six other appointments that day, and was anxious to get on her way. Maybe she just didn’t want to own up to the fact that she didn’t have the programmer with her. I have a few more scenarios, but I don’t feel the need to elaborate!

Was saving two minutes really worth putting my life in danger?

Essentially, this looks like my powerchair.  Only mine is newer, and cleaner.  Um, and I’ve never trick drove my powerchair like that!  Also, please note, I did not go through the company that made this video to get my chair.

Here’s What A Little Insect Bite Can Do…

Gross, huh?

Gross, huh?

On March 21st, I found some sort of bug bite on my right thigh while I was getting my PJ’s on.  I didn’t think too much about it and went to bed.

The bite  progressively grew bigger through the weekend. I kept hoping the bite would miraculously go away by itself!  There was no chance of that happening, much to my dismay.  

The following Tuesday,  I finally caved in and had one of PA’s  make me a doctors appointment.  They offered me an appointment April 15th.  My PA said, “No,  she needs to get in sooner; she is in pain.” I got an appointment  for that next Thursday. 

By the time I saw a doctor, I not only had a spider bite the  size if a baseball, and because I didn’t see the doctor right away I had also contracted cellulitis. I received a prescription  for antibiotics and a stint of time with my leg elevated, and a ten  minutes with my heating pad every few hours.  the Doctor did warn me the infection would get worse before getting better .

The bite was effecting the way I moved about. Normally, it’s no problem moving around the house in my manual wheelchair, by using my feet to propel myself around.  However, with a huge abscess  on my leg, I didn’t want to move around any more than I had to, because it sure did hurt when my left leg rubbed up against the abscess. I used my power chair more. I had to have extra support when I needed to transfer from one seat to another. It bruised my ego to have help getting in and out of bed, but it was better than falling and hurting myself even worse!

The cellulitis plagued me more than the spider bite. When I sat up, the cellulitis became quite uncomfortable. So, I was driven to utilize my recliner. I caught up on all the shows I watch; like Bones, Castle, and Gray’s Anatomy. Then I became engrossed in, Call The Midwife, that I saw while prowling through the shows on Netflix. I’m forever grateful to my friend who suggested I invest in a Roku streaming device, during the many times I would complain of having to watch one too many commercials, and paying too much for cable. These days, I have to force myself to watch some regular TV, if for nothing else then to keep current in the world!

Getting back to The spider bite. Two days later, the bug bite looked worse. My sister was called to get her opinion. She took one glance at it and said, “I’m taking you to the ER!” I protested, but it fell on deaf ears. I had nothing to eat that morning, and in hind sight I should have insisted that I eat something first.

The ER doctor looked too eager to pop something! I thought the proper procedure was to lance an abscess, and then gently squeeze the puss out. Nope! He put both of his thumbs on either side of the abscess and squeezed! It was extremely disgusting! The abscess erupted like a volcano! A flow of puke green cottage cheese curds cascaded down my leg. Seriously, I wanted to kick the doctor in his sensitive place; it hurt so badly! My foot was in an excellent position do so. I didn’t, and I’m so glad I didn’t, because as soon as he was done with me a real emergency came in. I never saw him again.

I wasn’t quite done grossing out my sister for the day. Before the doctor left, he wanted me to take my second antibiotic of the day, but then he added another antibiotic and a Percocet to the mix. I was rather leery about taking medication on an empty stomach. The nurse suggested I could have a sandwich, but all she brought me was an applesauce, and a package of crackers from the waiting room.

Twenty minutes later, all bandaged and medicated up and on the way out to the car; I started feeling hot and dizzy. As soon as my sister started backing out of the parking place, I threw up on myself (It was my brother-in-law’s car so I needed to preserve my good grace to ride in it.) My sister had planned on taking me on a few errands, but she quickly changed her mind. I was okay on the straight road, but once we reached my little, curvy street I lost it big time, but since I didn’t have anything of substance in my stomach, it didn’t smell. I got home around three, and I finally stopped up heaving about nine. I felt absolutely miserable!

I have two pieces of advice for you. If you are unfortunate enough to be a target of a bug’s fangs and the infection is not getting better within, please have it checked out by a doctor Secondly, if the doctor insists you take a cocktail of medication before leaving (this will most likely only happen in the ER), if you haven’t eaten in quite some time, if you have a slight build, and you’re sure you won’t be whisked off to surgery. Do yourself a big favor; insist right back that you have to put something substantial in your stomach before taking the medicine. Anybody in their right mind would want to avoid six hours of nausea, right?

Turtle Speed? Say What?

ImageImageThe image above me,  is that of a turtle. Do i look anything like a turtle?  No, i didn’t think so either .I was exiting a Lift bus when the driver said that I should have my power chair on “turtle”. Now I was paying attention to how I was driving onto the gangplank and not to her. When I stopped, I gave her a quizzical look. She said it was a new policy that Lift was trying to enforce on their riders to keep us safe.  When I still looked questioning she threw in that I had done nothing wrong.

When the lift reached the ground, she really wanted me on turtle speed. I tried it for 5.5 seconds, and I could not stand going so slow.  I turned my power chair up to a hungry turtle speed, and ignored her plea to go so slow. I had an appointment to get to, for goodness sake.

Either that driver was a control freak, or she had a bad experience with a passenger who had trouble driving their power chair.   No other driver has mentioned “the turtle policy” again, so I am sure it was a rouse to keep her “passengers” safe.

Thirty Years of Communication Devices

I am going  to share my LA speech with you!  It’s about my life experiences with communication trials and triumphs. Since thirty years is a lot to cover in a post,  I’m just going to dive in.

I was forced into getting my first speech generating device. I was going to be mainstreamed into my neighbourhood school system. All of my beloved teachers and parents agreed that I needed a way to communicate with my new peers and teachers. They were correct, of course. Nonetheless, I felt like they ganged up on me! I resented, the idea that my voice wasn’t clear to the average person I met. However, I thought if I tried hard and long enough, a person could learn to understand me. Clearly, I was day dreaming. because it is, a rare friend who will take the time to learn my peculiar axcent.

So, I was stuck learning a device I loathed, called the handivoice. The Handivoice was portable, true, but atrocious to learn. How many of you are, into numbers? Well, the handivoice just might be the AAC device of your dreams. The way this device worked is through a numeric code system. For instance, typing one hundred, would produce the sentence, I need help. 550 would start the words for the body. names, had to be spelled out by using the alphabet, codes 701 to 726. My sister’s name is, Carol. That’s five, three digit codes. We were able to shorten that down to only two codes. By using the word, care and the letter L. So, the codes for Carol was something like, 597 and 712.

I am not a, numbers gal. I was not motivated to learn this language composed of numbers, to say the least. Therefore, my speech pathologist created a cheat sheet for me on a battery powered scrolling directory. In some instances, the directory became my, low tech AAC device.

The handivoice had several drawbacks. It had no notebooks in which I could store things I wanted to say. I clearly remember preparing my graduation speech. I must have spent two hours programming my Parting remarks on to the handivoice. after I was finished, I went outside to get some fresh air. When I wanted to go back into the school, I singled to someone to help me with the door. As I was doing so, my hand dropped on to the devices power button. The handivoice turned off, and my speech was gone! Horrified, I raced to my speech pathologist, and she helped me to reenter the speech into the device, just in time to go to graduation.

If a device is not capable of storing the user’s own personal aray of conversational starters, and personal stories. It would be like hitting a baseball and running towards first base, each time a person turns on their communication device.

Another strike against the handivoice, is that it had just one voice. it was a deep male sounding voice. I was a twelve year old, petite thing. what’s wrong with this picture? For one thing, I wasn’t driven to use the device, because I was embarrassed by the voice. Second, in some instances, the synthesized voice was a lot harder to understand than my own voice. Why would I want to use an inferior voice then mine?

The handivoice finally came in handy, when I was meeting my new classmates. I let them play with it. I was really popular in school for a, while! However, when I had something I wanted to say to my new friends, it was difficult to reestablish control over my device.

After three years of trying to make it work for me, I severed my relationship with the handivoice. I just didn’t get the hang of using it for a reliable communication source. I vowed I would never have another voice generated device again. I kept my promise for over fifteen years. During that time, I fluctuated between two AAC devices, the canon communicator, and a Toshiba lap top computer.

The canon communicator was a small device with the alphabet and number keys. As I typed my message, ticker tape spewed from the canon’s side. I loved the canon, because it was very small and portable. My communication partners loved walking away from our talks with my end of the conversation. The only flaw the Canon had, was that it didn’t have anyway to store the key things I said over and over.

The Toshiba computer had a synthesized voice. However, I can probably count the number of times I actually used the voice. So, I can safely say, that system didn’t count for much.

Am I regretful, that I didn’t try to find a better communication device alot sooner?  No way! how could I miss something, I thought I would hate?

A few perceptive people would wonder out loud, I should think there would be a more sophisticated communication device for you. My favorite reply was to roll my eyes, shake my head with exasperation, and say, no this suits me just fine! years rolled by.

My interests and goals changed. I became involved in my state’s Partners in Policymaking class. A class where parents and self advocates, learned skills to advocate for changes in our state. I had to give several speeches through out the course of the class. I wrote the speeches, however my personal assistant was the one who read them, while I awkwardly, sat next to her, and acted like I belonged up there. I was really bothered by someone telling my own stories.

That question that mere strangers asked me, kept spinning in my head. Was there a communication device somewhere in the world that I would be willing to use? As fate would have it, one of my classmates from partners used an AAC device, and he had nothing but good things to say about his speech pathologist. I reasoned, with myself that there was no crime in just seeing how communication devices had evolved, over the years.

When Doctor Fried-Oken first saw me, she didn’t have a shred of doubt that she couldn’t help me to find a communication device. It was just a matter of finding the right match. It was the voice that hooked me first. I heard the best synthesized voice, and it came really close to sounding like a feminine voice. My heart was soaring through the clouds. Then, it plummeted back to earth, as I learned how the device worked. Another coding system, my brain was screaming at me to run away. Doctor Fried-Oken reeled me back in. “You can learn this device, Jan. It works by icon association.”

I found my brain could retain that the icon APPLE, stands for food when I pair it with the NOUN icon. When I pair the APPLE with the ADJECTIVE icon, the word hungry is typed. And, when I place APPLE along side the VERB, icon, the word eat appears. Then by grouping two picture icons APPLE and CACTUS, I have accessed, the Mexican food group. So, by stringing together APPLE, CACTUS and MORNING, I will get the food, taco. Just trust me, if you emerge yourself in learning this language known as Minspeak, as I did, you would be ready to communicate with moderate success, within six months.

When I told my family I was thinking about getting another speech generated device, I received mixed reactions. My mom supported me, even though I saw the doubt in her eyes. Carol was very blunt with me. She said, you hated the handivoice. What makes you think you will like, this new device any better?

I visited Carol one beautiful weekend. She was anxious to get outside, and do some gardening. she said I could join her outside, but she forbid me to talk to her. If I communicated with her, it was likely that she would have to stop what she was doing just to focus on my words. I agreed to hold my tongue, however I had Carol mount the communication device on my wheelchair before going outside. I figured she could garden, while I practiced my new language of Minspeak. I held my tongue alright, however we ended up having a conversation anyway, thanks to the Liberator communication device. she didn’t have to stop gardening once to interpret my words. I showed her, didn’t I! From that moment on, Carol was a big fan of the Liberator. The next thing I knew, she was asking me to give some presentations with her.

My biggest worry about getting the Liberator, was whether I would use it. Well, the Liberator was literally falling apart when it’s sucessor, the Pathfinder arrived. I held off getting the Pathfinder for as long as I could, because I didn’t want to learn to use another device. As it turned out, I was able to transfer my programmed stuff to the Pathfinder. by the way, A feature that I think the world of.

The only frustrating experience about getting the Pathfinder, was that Minspeak, (the language program I had used on the Liberator for ten years,)   had under gone a transformation to make it easier for newer users to learn. Once I reasoned that it was like learning a slightly different dialect, I absorbed it, quickly.

 I have caught you up to the current device I use, called the Echo. I have only been working with it a month, and it’s been an easy transition. Each of my last three devices have come from the same company, which has made transitioning to new devices so  much easier!    

Now I can have a little fun sharing with you what features I would build into a communication device. I want to think of a thought, and have my device say it. However, thoughts coming directly from the brain are so random, that I would likely get myself into trouble after five minutes of having such a device.

I know there, are groups working diligently on disarthric speech recognition. I know, because I have supplied a group with a sample of my disarthic speech. It is a fantastic ambition, however my voice fluctuates so greatly from day to day, that I fear that it is an impossible task. I sincerely hope they prove me wrong one day, soon!

I want an AAC device that will reflect my mood. If I want to sound sarcastic, I want people to understand that I’m being flippant. I like to tease people from time to time, and sometimes it frustrates me that the synthesized voice is so monotone, because it doesn’t reflect my unique personality.

I want a button for loud environments. whenever they are, in loud places synthesized voices become deathly quiet. It would be nice to push a button and have the volume raised exponentially so that I can be heard.

Having communication devices that will get a, animal’s attention would be a boon. I had a wonderfull dog for ten years. Duke knew my own voice well, however he totally ignored my communication device. I just think there might have been a time when he was loose outside, and in a dangerous situation, where getting his attention was vital. I wish I had some signal on my device that only dogs can hear, which would have dropped Duke immediately. I believe the technology is already out, it’s just a matter of getting it on communication devices.

I spend significant amounts of time waiting around for transportation. I would love it if I could down load books and games on to my device. Then along with that, I want a long lasting battery, for obvious reasons!

I wish my device would tell me when I’m about to make a huge communication blunder. The other week, I ran into a high school friend. We only had a few minutes to exchange some remarks. Rusty, shared how his wife had him busy driving her and a co-worker all over town, to get to job engagements. I hurriedly typed in that I thought Amy should start paying him. However, in my hurry, what was actually said was. Amy, should start selling you. He had a puzzled look, and suddenly I realized what the communication device said. I must have turned every shade, of red possible. I know I’m being facetious here, because I am the one who needs to be aware of what I’m typing. However, ten years ago who knew that you would be able to turn on and off your house lights from your phone half way around the world. So, anything is possible.

Tunnel Vision

Have you ever been so engrossed in a project, that you let most everything else go by the wayside, and just focused on that one project?  Well, that is exactly what has been happening with me!  I  think it was sometime in March that I was asked to give two presentations.  Actually, I was asked to give four speeches, but I when my eyes bulged out, and I communicated that I was committed somewhere else, people were very understanding.  Why is it when it rains, it pours?

So, I had these two presentations within three weeks of each other, and to tell the truth I really dislike preparing speeches. I love presenting the speeches, but coming up with the content of the speech is the hardest part for me.  I don’t know what people are going to want to hear!  I usually wait until the week before I’m to give the speech, to start working on it. Then have panic attacks the night before I give the speeches, because I feel I did not give it my best!  

 However, I am happy to announce I gave myself  three weeks to work on each speech.  There were some absolutely tortuous times for me,  when I couldn’t come up with specific examples that I knew were in my memory bank somewhere. Then as I was losing hope, an fresh example would fall right into my lap!   Yeah, for fresh examples! 

Adding to my anxiety was the fact that I was using a new communication device to give speech.  I have totally worn out my second communication device in a row.  The Pathfinder’s battery was not holding a charge, and was freezing up at inappropriate times.  So, I was loned the next communication device I am trying to get my insurance plan to cover since it is a medical necessity, called the Eco2.  It uses essentially the same program that I’m used to, except it is in a new frame. 

The Eco2 is  more computer driven, meaning that it has a touch screen, and can act like a big blackberry.  I just loaded in the memory from the Pathfinder, and was pretty much set.   However, this loaned Eco does not have the blackberry functions, so I will have to wait until I get my own device to actually believe that a communication device can indeed act like a blackberry!   

The one problem I had with the Eco, is that the voice that I grew to think of as my second voice, sounded dreadful on the Eco.  For a while I seriously thought about trying out another company that makes communication devices, but I did not want to learn a whol new system.      Determined to find a suitable voice, I spent a day just playing around with the twenty some voices I have available to me. 

Eureka!   I found a voice I like.  However, it’s a different speech generating program.  I am use to using DECtallk /digitalized  voices.  My new voice is Natural speech created by AT&T.  The voice closely resembles a hhhuman’s voice.  Therefore, the breaths and pauses are dramatically different than what I am use to.  I spent hours trying to get just the right breath and tones in. However, as it was a new adjustment, I am sure I did not get everything pitch perfect!   

   I am sure part of my drive to create these two speeches, had something to do with flying to Los Angeles to give the second speech!  I wanted that speech to be worthy of a trip to LA!  Like nearly always,I was making last minute changes five minutes before I gave the speech.  Even if I say so myself,  I am quite pleased with the finished products.

If I Had A VOCA! Wait! I Do Have A VOCA!

Check out the following Youtube video. I love it when a good learning tool falls into my lap! You will see lots of examples of Augmentative & Alternative Communication(AAC),  AAC is also known as Voice Output Communication Aid (VOCA).  Depending on what acronym a person is fitst introduced to Assistive Technology, we are most likely to refer to it as such.  Obviously, I”m partial to AAC!

http://www.youtube.com/watch?v=KJi_Si_jTHk.