In a previous post I mentioned a program called "model talker". No this is NOT a curvy blonde that Dave has to listen to, even thought he may wish that. No this is much better. This is a computer to speech program so he can hear my wonderful voice forever!
You are all familiar with the many recorded messages on the phone and other electronic devices. Some are better than others, but all work with pre-recorded words or phrases. On the other hand, model talker works with the various sounds of letters and letter groupings. In order to get all the sounds necessary the program required recording 3000 phrases. A very formidable task for someone encountering early speech difficulty. Therefore the designers are working on developing a list of about 1600 phrases that will still give the good quality of speech. Right now they have 6 lists. At 40 sites around the country speech therapists are working with 6 people each to see which list provides the best sound.
Even 1600 phrases takes time! The computer must be satisfied with the correct volume, correct pitch, and correct pronunciation! To keep things interesting I needed to do all this without my bipap providing breathing assistance. Someone had to stand by to give me a breath when needed.
At the beginning of each session there is a calibration section. It includes saying such phrases as "Take ten sapphires to Sarasota" or "please pass poppa the peanuts". With 7 phrases like that it might take several tried to complete the calibration before going on to the phrases. The first session I was only able to do 50 phrases, by the end I could do 130 - 150. It was a very interesting experience, but I was glad to be finished.
Since I was the first one finished the researchers are not sure when we get my voice recording. I know Dave is eagerly awaiting the opportunity to hear my voice at all times!
Thursday, September 30, 2010
Thursday, September 2, 2010
Hello World!
As you can see I now have a web site. A friend helped design it and added rhe first few posts and pictures. Now this is me, ready to go.
And So It Goes...
I sent this to many of you, but I wanted to post it to have it in the online archive.
You all know the feeling when you receive the annual reminder for you mammogram. It is one of those “I know I should, but don’t really want to” feelings. Well, that was in June and I had lots of excuses – I just had the left one checked in Feb for the 6 month check after my lumpectomy and it was fine - if anything showed up would I do anything about it? And I had to wait to see if I was accepted in the “model talker” study with OHSU. (More about that in another email.) These thoughts served me well as the letter then got lost in the stuff on my desk.
Oh, they are smarter than I thought. Another letter was sent with a handwritten note. Guess I’ll have to do something. I looked at my calendar and thought the second week of September looked good so I then called. Opps, they had an opening tomorrow. Couldn’t make that since I already had something, but, yes, Monday would be fine.
So on Monday, my caregiver, Sherry and I headed out. I had been pre-registered and told them I had ALS and used a power chair. It seems that information did not get from the scheduler to the tech doing the mammogram. Picture this: It’s Monday morning; your day and week have started great. Picking up the information on your next patient you head to the waiting room. As you call her name what do you see, but this women in a power chair, with a neck brace and a breathing mask and an arm brace. The look on her face was priceless as she struggled to hide it. As we whisked to the room she calls to another tech “I’m going to need some help here.”
Actually what she did need was to calm down, but I digress. This time she put us in a consult room rather than the little bitty change rooms. (In February they tried to put me in the little rooms and I ran over my friend Kathy.) OK, now there are 2 techs, Sherry, me and my power chair in the room. The nervous tech gives Sherry a charming blue lead jumper to wear and then tries to figure out how to do this whole thing.
Fortunately the helper had helped with me before and listened when I explained that I could stand, but could not raise my arm, hold my head up or straighten my back without assistance. Mean while Sherry has unhooked the bag that holds my Bipap and its battery so I could move away from the chair. They decided to do the right one first, as that was the easy one. Easy for who? As the 2 techs try to help me from the chair (which I don’t need), Sherry puts the bag with Bipap down by the machine. Now they have to figure out what they are going to do. Sherry takes the lead and holds my head up and suggests they place my arm where they want it. Finally they figure it out , Sherry leans against me to hold my back while she holds my head, they futz a bit more and finally take the picture. As usual my face is jammed against the machine, but I also have the Bipap mask to contend with. One down.
After a bit more fussing they get the next and I decide I need to sit a bit. Have you ever had 3 people trying to help you sit down? Sherry moves the bag closer to the chair while they discuss the other boob. Do they need to mark the scars from both lumpectomies, what about the mole? Now keep in mind this boob is smaller since it has had two chunks taken out and it is the one that needs extra pictures. Here we go again. First one is not too bad as Sherry now knows how to brace me and support my head without cutting off the airflow to my mask. Now the next one and they tell me not to close my eyes as they want to know if I am going to faint. OK my face with mask is jammed against the plastic screen and I’m supposed to keep my eyes open, sure. We get the second one done after two tries and my complaint that my rib is being squished.
Now they have to change to machine for an enlarged shot so I decide to sit down. The helper and Sherry are with me and the nervous one picks up the bag. For some reason she panics and doesn’t think 2 people are enough to help me and DROPS the bag to reach for me. I think both Sherry and I had remarkable control as we both almost freaked out. Neither of us said what we were really thinking, thank heavens. That was shared later. The printable thought was if anything happened to the Bipap I, and they, would be in real trouble. You can probably guess the unprintable thoughts. For the next series Sherry guarded the bag with her life and let nervous one worry about me. Finally we were finished. As soon as we were back in the change room we sure had plenty to talk about.
Shortly they came back to say the radiologist had looked at it and all was fine. With a cheery smile we were sent on our way with a “See you next year”. Not if I can help it!
You all know the feeling when you receive the annual reminder for you mammogram. It is one of those “I know I should, but don’t really want to” feelings. Well, that was in June and I had lots of excuses – I just had the left one checked in Feb for the 6 month check after my lumpectomy and it was fine - if anything showed up would I do anything about it? And I had to wait to see if I was accepted in the “model talker” study with OHSU. (More about that in another email.) These thoughts served me well as the letter then got lost in the stuff on my desk.
Oh, they are smarter than I thought. Another letter was sent with a handwritten note. Guess I’ll have to do something. I looked at my calendar and thought the second week of September looked good so I then called. Opps, they had an opening tomorrow. Couldn’t make that since I already had something, but, yes, Monday would be fine.
So on Monday, my caregiver, Sherry and I headed out. I had been pre-registered and told them I had ALS and used a power chair. It seems that information did not get from the scheduler to the tech doing the mammogram. Picture this: It’s Monday morning; your day and week have started great. Picking up the information on your next patient you head to the waiting room. As you call her name what do you see, but this women in a power chair, with a neck brace and a breathing mask and an arm brace. The look on her face was priceless as she struggled to hide it. As we whisked to the room she calls to another tech “I’m going to need some help here.”
Actually what she did need was to calm down, but I digress. This time she put us in a consult room rather than the little bitty change rooms. (In February they tried to put me in the little rooms and I ran over my friend Kathy.) OK, now there are 2 techs, Sherry, me and my power chair in the room. The nervous tech gives Sherry a charming blue lead jumper to wear and then tries to figure out how to do this whole thing.
Fortunately the helper had helped with me before and listened when I explained that I could stand, but could not raise my arm, hold my head up or straighten my back without assistance. Mean while Sherry has unhooked the bag that holds my Bipap and its battery so I could move away from the chair. They decided to do the right one first, as that was the easy one. Easy for who? As the 2 techs try to help me from the chair (which I don’t need), Sherry puts the bag with Bipap down by the machine. Now they have to figure out what they are going to do. Sherry takes the lead and holds my head up and suggests they place my arm where they want it. Finally they figure it out , Sherry leans against me to hold my back while she holds my head, they futz a bit more and finally take the picture. As usual my face is jammed against the machine, but I also have the Bipap mask to contend with. One down.
After a bit more fussing they get the next and I decide I need to sit a bit. Have you ever had 3 people trying to help you sit down? Sherry moves the bag closer to the chair while they discuss the other boob. Do they need to mark the scars from both lumpectomies, what about the mole? Now keep in mind this boob is smaller since it has had two chunks taken out and it is the one that needs extra pictures. Here we go again. First one is not too bad as Sherry now knows how to brace me and support my head without cutting off the airflow to my mask. Now the next one and they tell me not to close my eyes as they want to know if I am going to faint. OK my face with mask is jammed against the plastic screen and I’m supposed to keep my eyes open, sure. We get the second one done after two tries and my complaint that my rib is being squished.
Now they have to change to machine for an enlarged shot so I decide to sit down. The helper and Sherry are with me and the nervous one picks up the bag. For some reason she panics and doesn’t think 2 people are enough to help me and DROPS the bag to reach for me. I think both Sherry and I had remarkable control as we both almost freaked out. Neither of us said what we were really thinking, thank heavens. That was shared later. The printable thought was if anything happened to the Bipap I, and they, would be in real trouble. You can probably guess the unprintable thoughts. For the next series Sherry guarded the bag with her life and let nervous one worry about me. Finally we were finished. As soon as we were back in the change room we sure had plenty to talk about.
Shortly they came back to say the radiologist had looked at it and all was fine. With a cheery smile we were sent on our way with a “See you next year”. Not if I can help it!
Team "gang Greene" at 2009 Walk to Defeat ALS
We had a perfect Portland day with sunshine and mild temperatures, and we're looking forward to another walk this year on September 26th.
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