Wow, I absolutely don't believe it's been so long since I've posted, but there is so much going on, mostly annoyances of all sizes. I am still waiting for a date for my "fair hearing", which doesn't guarantee reinstatement into Medicaid. I'm trying to see if Concepts can help. But they keep referring me back to the very supervisor at CASA who is covering up for the caseworker. Nevertheless, I am going to give her a call. Mind you, I owe my life to relay calling, but a relay call takes so much longer. The people at CASA claim they don't have email, but I find that hard to believe; they probably don't want to give out their email addresses because emails are so easy to hold onto and so easy to use in a "he said/she said" situation. But what they don't realize --shhh -- is when you make a relay call, the transcript of the call can be saved. Anyway, a well-meaning friend said she thinks "7 On Your Side" or "Shame on You" or some other broadcast ombudsman should be contacted, as well as local political figures. I replied " great idea. Care to make some phone calls for me?" Of course, everyone tells me how angry they are for me, they're sending prayers, keeping me in their thoughts, etc. etc. etc. , but of course, none of this means tangible assistance. I am trying to see if the disability activists can find a "pro bono" attorney. The social worker at the ALS clinic asks what she can do to help, and so I do have people in the field of health care who are expressing concern, so we have to see if this is more than lip service. I am "cautiously optimistic", but still scared. As for the media, those television people rarely go after government agencies. They are more into busting the sleazy contractor whom you paid in total up front, did half the work, and never came back, won't return phone calls, ignores your emails. My greatest fear is to never get a "fair hearing" date and suddenly be informed my Medicaid and home care have been discontinued.
I had two inexcusable "adventures" with Access-a-Ride last week that exhausted and pissed off my aide and I. I am immensely grateful that New York City has this service for people with disabilities, both permanent and temporary. But, few people understand that it's not a door-to-door limo service. You have to call one or two days in advance of the trip, and you can only do this between 7:00am and 5:00pm. So if your friend calls at 6:00pm and asks you to go somewhere the next day -- tough luck, Chuck!! Also they give you a time, but you have to give them a 30-minute cushion. So if they give you a pickup time of 11:30am, you have to give them until noon before you call the dispatcher to say they're late. When they pull up, there might be someone else on the bus that they need to drop off, and they may also do other pickups along the way. These other dropoffs and pickups don't have to be anywhere near you.
So last Monday, we had a 2:30pm pickup from my therapist on West 38th Street, and when no one showed up by 3:00pm, we called. The dispatcher said that we were marked as no-shows, which had to be a lie, because we were out in front at 2:15pm. So the dispatcher said we would have a "rescue" driver in 45 minutes. Now, I have a place to sit wherever I go [the advantage of being in a wheelchair], but there is no place to sit in the lobby of that building. So, already, my aide was standing 45 minutes, and had to look forward to standing another 45. Except that, by 3:45, still no access-a-ride. So we called again -- next estimate: 45 minutes more. That brought us to 4:30. Now we are up to two hours and 15 minutes my aide would be standing. She was understandably fuming. Access-a-Ride pulled up at 4:45 and there were two separate parties already on board, including one lady in a wheelchair. We dropped one group of two up in Harlem -- yes up to Harlem, after picking upp a lady and her aide at Mount Sinai Hospital in lower Harlem. The patient was in a wheelchair and yelled that she wanted to transfer into a seat, but all seats were taken. After we dropped off the three passengers in Harlem, the lady yelled "Now can I transfer?", which drew a groan from me, because that would delay my trip home. The driver and the aide said no, and it turns out we had another pickup before heading into Queens. It turned out the poor woman in the wheelchair was going to Brooklyn. All the way into Queens, she was yelling "I want to go in a seat!" and then when we got into Queens, she started yelling "This doesn'xwas not a happy camper, and she made no compunctions about showing it -- for the next few days. I knew it wasn't my fault -- I just happened to be there.
Later on that week, I had an appointment at Cornell, which is right over the river from Queens. but our 11:45 pickup came at 12:30 and, instead of going home across the river to Queens, we filled the bus with pickups and drop-offs all the way at the southern tip of Manhattan. We had left the house a little after 8:00 for a 9:30 appointment [for which we were early], and should have been home by 12:30 the latest. We came in the door at 4:10pm. The ride on Access-a-Ride in a wheelchair is far from relaxing. First of all, I am in terrible pain from these braces [which will finally be changed out in two weeks] and it's as if Access-a-Ride never heard of shock absorbers. The ride itself is hell.
The bright spot was Louise taking me out last Sunday to Panera and then to Red Mango for the best frozen yogurt! I'm basically housebound except for about once -- or sometimes twice-- a month that my angel Judy Lewis comes to get me out. And Louise finds what little free time she has to come by on a weekend and get me out. The aides don't want to go out, except to do errands, and they don't want me along. So I hear the weather reports of beautiful sunny days and know I can't enjoy it except for doctors' appointments or the one or two outings a month I have with Judy or Louise. Back in 2006 and 2007, I had a lot of people who would come over and take me out of my apartment. But those people have faded away.
Everything seems to be breaking down at once. I have been in virtual darkness after sundown for the last two weeks. First, my table lamp broke, and I ordered a set of "sunlight lamps" which sounded great in their online descriptions. But in reality, they were all wrong. I had waited several days for them to be delivered. I am in the middle of the shopping capital of New York, but with nobody to go to the store with me, I am forced to shop online. Then my ceiling fan/light fixture in the hallway blew and when the doorman replaced the light bulb, it didn't work. So I think i need a new ceiling fan/fixture. Now, I finally received the new table lamp I ordered. And, on top of that, my super tells me I need a new bathroom sink [the stopper is broken] and a new toilet. I bought a new faucet at his suggestion for the kitchen sink [which won't stop dripping] and now he tells me I need a whole new kitchen sink. Mind you, I still have to do it on the cheap because after I die, this apartment goes to Medicaid. And my case being pending, I'm told that any benefits I have received since May 1, will have to be paid back if I don't get my Medicaid back. Where do they think I am going to get the money to pay them back? Just aides alone work 168 hours a week at $11.00 an hour. You do the math, because I'm too tired to multiply.
Saturday, June 2, 2012
Tuesday, April 24, 2012
My Own Reality Show: How NYC Bureaucracy and Health Care Messes People Up
I would like to say that last week was the week from hell. But it could have been worse. Mentally, I almost lost it, but all through the week, I had to keep my cool so as to keep my health and immunity, and not raise my blood pressure. And of course, since I have auto-immune conditions -- the worst of which are my allergies -- my mental condition had to stay within control. What happened was so out of my control that I had to give up any attempt to take control, and that meant I had to accept that the people involved are stupid, inept, non-caring, and nothing more than government drudges who are programmed like robots, to do and say certain things, regardless of the fact that they hold the fate of a human being in their hands. As you read this, understand that I am a comparatively young, and very educated and intelligent person of pretty sound mind. Also keep in mind that if this happened to me, it has to be happening to millions of other people, most of whom are older than I, and be not with as sharp a mind as I have. Most of all, I could be your parent, grandparent, friend, any family member or loved one. I don't think anyone really appreciates the fatigue that goes along with a neuromuscular disease.
I have Medicare, since I had to leave my job in late 2004, and collect Social Security Disability. Anticipating that I would need round-the-clock care, Eileen, the social worker at the ALS clinic at the time, referred me to an eldercare attorney, and I got into a pooled-income trust. In order to get all that home care, you have to get on Medicaid. The pooled-income trust takes everything except the under-$800 I am allowed to keep. The trust pays my monthly bills. with the money I send them, which is everything else. Without the trust, I would have to go down to the Medicaid office every month and present my bills to have my Medicaid "turned on" and make sure there were no gaps, or I would have Medicaid "turned off" and would have to have it "turned on" again. Instead -- in my case -- I just have to stay in the trust by re-certifying every year.
Recertification: Every year, I receive the appropriate form in the mail about 4-6 weeks before the due date. This gives me time to gather about 50 documents that have to be attached, and which give me certain information that goes on the form. Then, for my own protection, I never let anything leave this house without making copies. My multi-function printer/scanner/copier is not all that fast, so it's a tedious process. It's also a fatiguing activity for me, especially since this damn new wheelchair has obnoxious footrests that don't fold up like my old ones, and it's tiring to keep reaching for files, because I can't park the wheelchair close enough to the file cabinet. It's hard for anyone to help me, because it's a lot faster for me to find the files and not have to talk to someone to give directions.
On Sunday, April 15, I pulled my wheelchair up to my desk, and it gave a jump and and landed the right arm containing the joy stick, under the desk, and the control bent totally upward so I couldn't move the wheelchair. Sunday is TV night for me -- my three favorites all in a row 8PM "The Amazing Race", 9PM "The Good Wife" and 10PM "Mad Men". Well, the Race was about to start, and I couldn't move, and my back was to the TV. G, my aide is not good in a crisis. I was trying to tell her to put the wheels in manual and pull me back. She never got me the iPad or writing board and the frustration was mounting and my voice went up two octaves. G. said she couldn't deal with "this strange voice" and panicked even more. I finally convinced her to get the doorman, who if you compare him to the sharpness of the knives in the drawer, he's the butter knife. It was like a scene from "Confused and Dumber". Finally, we called 9-1-1 and two cops came and shifted the wheels while lifting the desk a bit, and I was free. Except that my joystick was forever bent because it was in that position for a full hour. My "Amazing Race" was over, and "The Good Wife" was about to start, but the stress was there; you could cut it with a knife. Not only was I stressed out that there had to be such drama, but now I knew there would be challenges driving the wheelchair until it was repaired. The process of getting the repair approved through Medicare is a long and involved one. If the wheelchair had been pulled back immediately after this happened, rather than almost an hour later, the damage wouldn't have been as serious. But I didn't feel like arguing about fault, or about how "unsafe" it is, and certainly not about how the aide had to get the doorman as a "witness" so I wouldn't get her in trouble or say that my voice change to a higher pitch was because she was abusing me. The woman has been with me for five years, and I asked her one question: "So in a crisis, you are more concerned with how it looks for you, than helping me?" I knew the answer. I just wanted to watch "The Good Wife" and "Mad Men"
Back in February I called my case worker JP because I knew my recertification was coming up again, and I told him I would download the M11q doctor's form and bring it to my clinic appointment. He told me that the form was due like right now. So of course I told him I would get an appointment at the ALS clinic as soon as possible and have the form signed. He warned me that I'd better get it in soon, or my Medicaid will be cut off. I went to clinic on March 2, and the next day sent my aide to UPS to fax it. But first we have to call JP, because even if I put the fax to his attention, it goes right to the Central Office and nobody gives it to him. So he has to be at the fax when the fax comes in, or someone else will snatch it. I'm not making this up. So when my aide calls him, he says "Why are you sending this to me? I'm not showing in my computer that it's due." My aide reminds him that he threatened me with cutting off my Medicaid. He says "I did?" I call him and ask him about the recertification. He says "Wait until you receive it and fill it out and send it in".
So the day after the wheelchair mishap, which is Monday, April 16, I get a call from JP. He yells at me "Where is your recert? You never sent it in? The Central Office is cutting off your Medicaid!! Why didn't you send me a copy?" I reminded him that he told me to fill it out when I received it, and I never received it. He yelled "According to them, they sent it to you, and you never returned it!"
"I don't care what they say", I told him. "I never got anything"
JP said "well, they don't care what you say. They say they sent it. I am coming to your house tomorrow. Have it ready for me to pick up!"
I told him that, even if I had the form, there was no way I would be able to do it that fast. He said he was out in the field but would fax it to me the next day- Tuesday, which he did, and said he would be at my apartment on Thursday to pick it up at 10:00am and I should have it ready. Maybe if I could give it to him then, we could avoid the interruption of my Medicaid.
The next two days, I let my emails and everything else pile up. I cancelled two appointments. I had already gotten most of the documents together on Monday, because I had done this form 5-6 years in a row. Unfortunately, my files are not as neat as I would like them to be, but I managed to clean out some files while I was digging for the documents I needed. Now I had to put everything in order and make copies, with the aides' help loading paper in the printer and stapling things together. By Wednesday early evening, it was all together. When JP came the next day, I would be able to hand it to him in perfect order and maybe he could expedite the process.
So JP walks in on Thursday morning and sits in the chair. He says "Feel free to ask me any questions". I said "I have no questions". I try to hand him the big brown envelope with everything he needs, and came to pick up from me. He doesn't touch it. Instead he says "I'm in the field today. Tomorrow I will not be going into the office because I have a training. I will have to hold this until Monday. If you trust me, I will take it. But I am not responsible if it gets lost or gets into the wrong hands."
WHAT????!! Is this really happening? He tells me "If I were you, I would take it into my office and give it to my supervisor LR" His office is clear on the other end of Queens in Long Island City. He turns to my aide and says "Why don't you take it in today". He offers her driving directions, but she doesn't drive. And I want to go with her. I can't go on the subway because it's not accessible. JP doesn't tell us the Queens Boulevard Bus [Q60] goes right there [the buses are accessible], so I tell him I will book Access-a-Ride for the next day. He calls LR and verifies she will be there in the morning and I tell JP I will be there in his office tomorrow.
He tells me he is retiring in July and says "By the way, your Medicaid will definitely be cut off on May 1, but not your home care. But you should get it back in 4-6 weeks. I use Medicaid for my psychologist, and for dental and optical. I was planning to get new eyeglasses for the first time in three years, and go to the dentist for the first time in two years. I guess both of those will need to wait a little longer. "You and I won't be seeing each other again, so good luck to you", JP says as he walks out the door. Yeah, Mr. P, good luck to you too, and thanks for this mess-up as your swan song. But why should you care?
So the next morning we go to the CASA/Medicaid office and we are met by LR and she calls JP out of his cubicle. I don't miss a beat. I look at him as he escorts us into a conference room, and I set up my iPad so I can speak. I remind him he told me he wasn't coming to the office today. He says "I have a training later", and then he adds "I didn't know you were coming here so early while I was still here" And he gives a nervous giggle......BUSTED.....
"But Mr. P, you told me you weren't coming here until Monday. Why couldn't you bring in my papers?"
" I told you I wouldn't be responsible and you CHOSE to come in here"
"But that was because you said you weren't coming here until Monday"
Again, he repeated, "I thought you would arrive here after I went to my training", and he ran out of the room. So, in other words, you didn't know you would be busted.
LR comes into the conference room, opens up my envelope, sees that I have everything, including a set of papers I didn't need to submit past the first year of the trust. She looks at me and says "I don't understand why Mr. P couldn't just bring this in. Why did he make you come in?" She leaves to make copies of everything. JP comes back in the room with her and she hands me the copies. JP says "You see, Ms. Cohen. It's always a good idea to come in person" Excuse me? Did you ever tell me that was even an option all these years when I paid $20.00 at UPS to send this, rather than $4.50 for Access-a-Ride and the luxury of someone making the copies for me with the city's paper and ink?
Fast Forward to today. I received official notice that my Medicaid is discontinued as of May 1, including my home care. BUT I can appeal by requesting a hearing, and then I will continue to receive my service until a decision is made. So I requested a hearing online, and I will have to go to Brooklyn at the date they give me, even though my papers have been submitted. And this is all through no fault of my own. JP is retiring, so he cares even less than he always has. I'm thinking of writing to my city councilwoman or my state senator and/or assemblywoman, but let's see how much energy I have. First I want everyone to read it here, and know this is not just me. Things like this are probably happening every day. All government agencies have people who are biding their time until retirement. And if they can do this to a smart and level-headed person like me, think about what they are probably doing to elderly patients or families with children. You're right, JP ---- when you said "I am not responsible", you really meant it.
I have Medicare, since I had to leave my job in late 2004, and collect Social Security Disability. Anticipating that I would need round-the-clock care, Eileen, the social worker at the ALS clinic at the time, referred me to an eldercare attorney, and I got into a pooled-income trust. In order to get all that home care, you have to get on Medicaid. The pooled-income trust takes everything except the under-$800 I am allowed to keep. The trust pays my monthly bills. with the money I send them, which is everything else. Without the trust, I would have to go down to the Medicaid office every month and present my bills to have my Medicaid "turned on" and make sure there were no gaps, or I would have Medicaid "turned off" and would have to have it "turned on" again. Instead -- in my case -- I just have to stay in the trust by re-certifying every year.
Recertification: Every year, I receive the appropriate form in the mail about 4-6 weeks before the due date. This gives me time to gather about 50 documents that have to be attached, and which give me certain information that goes on the form. Then, for my own protection, I never let anything leave this house without making copies. My multi-function printer/scanner/copier is not all that fast, so it's a tedious process. It's also a fatiguing activity for me, especially since this damn new wheelchair has obnoxious footrests that don't fold up like my old ones, and it's tiring to keep reaching for files, because I can't park the wheelchair close enough to the file cabinet. It's hard for anyone to help me, because it's a lot faster for me to find the files and not have to talk to someone to give directions.
On Sunday, April 15, I pulled my wheelchair up to my desk, and it gave a jump and and landed the right arm containing the joy stick, under the desk, and the control bent totally upward so I couldn't move the wheelchair. Sunday is TV night for me -- my three favorites all in a row 8PM "The Amazing Race", 9PM "The Good Wife" and 10PM "Mad Men". Well, the Race was about to start, and I couldn't move, and my back was to the TV. G, my aide is not good in a crisis. I was trying to tell her to put the wheels in manual and pull me back. She never got me the iPad or writing board and the frustration was mounting and my voice went up two octaves. G. said she couldn't deal with "this strange voice" and panicked even more. I finally convinced her to get the doorman, who if you compare him to the sharpness of the knives in the drawer, he's the butter knife. It was like a scene from "Confused and Dumber". Finally, we called 9-1-1 and two cops came and shifted the wheels while lifting the desk a bit, and I was free. Except that my joystick was forever bent because it was in that position for a full hour. My "Amazing Race" was over, and "The Good Wife" was about to start, but the stress was there; you could cut it with a knife. Not only was I stressed out that there had to be such drama, but now I knew there would be challenges driving the wheelchair until it was repaired. The process of getting the repair approved through Medicare is a long and involved one. If the wheelchair had been pulled back immediately after this happened, rather than almost an hour later, the damage wouldn't have been as serious. But I didn't feel like arguing about fault, or about how "unsafe" it is, and certainly not about how the aide had to get the doorman as a "witness" so I wouldn't get her in trouble or say that my voice change to a higher pitch was because she was abusing me. The woman has been with me for five years, and I asked her one question: "So in a crisis, you are more concerned with how it looks for you, than helping me?" I knew the answer. I just wanted to watch "The Good Wife" and "Mad Men"
Back in February I called my case worker JP because I knew my recertification was coming up again, and I told him I would download the M11q doctor's form and bring it to my clinic appointment. He told me that the form was due like right now. So of course I told him I would get an appointment at the ALS clinic as soon as possible and have the form signed. He warned me that I'd better get it in soon, or my Medicaid will be cut off. I went to clinic on March 2, and the next day sent my aide to UPS to fax it. But first we have to call JP, because even if I put the fax to his attention, it goes right to the Central Office and nobody gives it to him. So he has to be at the fax when the fax comes in, or someone else will snatch it. I'm not making this up. So when my aide calls him, he says "Why are you sending this to me? I'm not showing in my computer that it's due." My aide reminds him that he threatened me with cutting off my Medicaid. He says "I did?" I call him and ask him about the recertification. He says "Wait until you receive it and fill it out and send it in".
So the day after the wheelchair mishap, which is Monday, April 16, I get a call from JP. He yells at me "Where is your recert? You never sent it in? The Central Office is cutting off your Medicaid!! Why didn't you send me a copy?" I reminded him that he told me to fill it out when I received it, and I never received it. He yelled "According to them, they sent it to you, and you never returned it!"
"I don't care what they say", I told him. "I never got anything"
JP said "well, they don't care what you say. They say they sent it. I am coming to your house tomorrow. Have it ready for me to pick up!"
I told him that, even if I had the form, there was no way I would be able to do it that fast. He said he was out in the field but would fax it to me the next day- Tuesday, which he did, and said he would be at my apartment on Thursday to pick it up at 10:00am and I should have it ready. Maybe if I could give it to him then, we could avoid the interruption of my Medicaid.
The next two days, I let my emails and everything else pile up. I cancelled two appointments. I had already gotten most of the documents together on Monday, because I had done this form 5-6 years in a row. Unfortunately, my files are not as neat as I would like them to be, but I managed to clean out some files while I was digging for the documents I needed. Now I had to put everything in order and make copies, with the aides' help loading paper in the printer and stapling things together. By Wednesday early evening, it was all together. When JP came the next day, I would be able to hand it to him in perfect order and maybe he could expedite the process.
So JP walks in on Thursday morning and sits in the chair. He says "Feel free to ask me any questions". I said "I have no questions". I try to hand him the big brown envelope with everything he needs, and came to pick up from me. He doesn't touch it. Instead he says "I'm in the field today. Tomorrow I will not be going into the office because I have a training. I will have to hold this until Monday. If you trust me, I will take it. But I am not responsible if it gets lost or gets into the wrong hands."
WHAT????!! Is this really happening? He tells me "If I were you, I would take it into my office and give it to my supervisor LR" His office is clear on the other end of Queens in Long Island City. He turns to my aide and says "Why don't you take it in today". He offers her driving directions, but she doesn't drive. And I want to go with her. I can't go on the subway because it's not accessible. JP doesn't tell us the Queens Boulevard Bus [Q60] goes right there [the buses are accessible], so I tell him I will book Access-a-Ride for the next day. He calls LR and verifies she will be there in the morning and I tell JP I will be there in his office tomorrow.
He tells me he is retiring in July and says "By the way, your Medicaid will definitely be cut off on May 1, but not your home care. But you should get it back in 4-6 weeks. I use Medicaid for my psychologist, and for dental and optical. I was planning to get new eyeglasses for the first time in three years, and go to the dentist for the first time in two years. I guess both of those will need to wait a little longer. "You and I won't be seeing each other again, so good luck to you", JP says as he walks out the door. Yeah, Mr. P, good luck to you too, and thanks for this mess-up as your swan song. But why should you care?
So the next morning we go to the CASA/Medicaid office and we are met by LR and she calls JP out of his cubicle. I don't miss a beat. I look at him as he escorts us into a conference room, and I set up my iPad so I can speak. I remind him he told me he wasn't coming to the office today. He says "I have a training later", and then he adds "I didn't know you were coming here so early while I was still here" And he gives a nervous giggle......BUSTED.....
"But Mr. P, you told me you weren't coming here until Monday. Why couldn't you bring in my papers?"
" I told you I wouldn't be responsible and you CHOSE to come in here"
"But that was because you said you weren't coming here until Monday"
Again, he repeated, "I thought you would arrive here after I went to my training", and he ran out of the room. So, in other words, you didn't know you would be busted.
LR comes into the conference room, opens up my envelope, sees that I have everything, including a set of papers I didn't need to submit past the first year of the trust. She looks at me and says "I don't understand why Mr. P couldn't just bring this in. Why did he make you come in?" She leaves to make copies of everything. JP comes back in the room with her and she hands me the copies. JP says "You see, Ms. Cohen. It's always a good idea to come in person" Excuse me? Did you ever tell me that was even an option all these years when I paid $20.00 at UPS to send this, rather than $4.50 for Access-a-Ride and the luxury of someone making the copies for me with the city's paper and ink?
Fast Forward to today. I received official notice that my Medicaid is discontinued as of May 1, including my home care. BUT I can appeal by requesting a hearing, and then I will continue to receive my service until a decision is made. So I requested a hearing online, and I will have to go to Brooklyn at the date they give me, even though my papers have been submitted. And this is all through no fault of my own. JP is retiring, so he cares even less than he always has. I'm thinking of writing to my city councilwoman or my state senator and/or assemblywoman, but let's see how much energy I have. First I want everyone to read it here, and know this is not just me. Things like this are probably happening every day. All government agencies have people who are biding their time until retirement. And if they can do this to a smart and level-headed person like me, think about what they are probably doing to elderly patients or families with children. You're right, JP ---- when you said "I am not responsible", you really meant it.
Friday, March 23, 2012
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.
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.
Sunday, January 22, 2012
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.
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.
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.
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.
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.
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