A "Frequent Flyer"

A walking path in my backyard

I began writing this blog post 7 weeks ago, starting with: “I have written each post this year saying that I had just gotten out of the hospital, although I’m happy to report I’ve managed to stay out of there and at home relaxing with Everett. I did have a UTI the week before Labor Day, but thanks to some quick actions of getting on antibiotics, I was able to avoid it.” In my last blog entry, I stated “… I don’t like every entry to be about me being sick or in the hospital.”

Since October of last year, I've been in the hospital 6 times. That's a lot for me and takes a toll on my body physically and mentally. I also need to miss appointments and ABLE because it takes so long for me to recover after a big stay like that. Despite what I wrote, September 23 I went by nonemergency ambulance. After some testing, they found I had case of double pneumonia. I guess I knew the first day that I went in, but soon my oxygen went down to the low 70s even on 5 L of oxygen and I couldn’t maintain it. After that, they had to slowly sedate me to keep me comfortable because I was having high anxiety, trouble sleeping and difficulty maintaining breathing. I was sedated for approximately 4 days.

In the beginning, they gave me 3 Bronchoscopy’s, a CT scan, x-ray and tried 9 separate IV antibiotics until they found a combination of 3 that finally worked. Also, my lungs needed to relax and heal. They also had to monitor me better, so they put me on one of their ventilators. I was even trying to fight their vent (meaning it was giving me 20 breaths per minute, and I was bringing it to 25.)

From the start, it was just baby steps, 1 foot in front of the other (or should I say, one wheel?) Also, since coming home, I’ve been sleeping a lot; something I don’t do enough of. I know now when my body says “sleep,” it usually means that I need to rest and sleep whenever I can. By resting, accepting help from friends and family, and gradual actions to recover, I have the best plan in place to a speedy recovery. There were signs and symptoms that went on right before, that I now realize to be something to watch out for before things get too extreme.

If you’re reading this and live outside of Minnesota, throughout the summer, Canadian wildfire smoke significantly affected the state. The worst air quality was recorded in late July and early August. Some of them were issued for multiple days at a time. I couldn’t go outside when the air was bad because of my asthma and the fact that I’m on a ventilator. I have trouble enough as it is. Not being able to get out of the house is hard enough but when it is more than a week it becomes depressing.

This past spring I started the process of applying for a new wheelchair. I’m eligible for a new one every 5 years and I’ve had mine for 7 years. It’s a long and daunting process, sometimes taking over a year for insurance to cover everything I need. First, I had to have my Dr. write a prescription. Then, I underwent a wheelchair evaluation with a physical therapist aside my medical equipment supplier. Finally, I selected which chair I wanted along with what I needed it to do.

I ordered it to recline, tilt, legs to raise, change drives (making it speed up or slow down, elevate, and other things my wheelchair now can do and more.) Insurance approved everything so far, except for the seat elevation portion. That’s what allows me to raise my chair up and down. It’s easier for people working to reach my height. I appealed it, but I’m just waiting for their decision.

Labor Day weekend my boyfriend Jay visited me from Jacksonville, Florida. We met through my blog. After his T1/T2 spinal cord injury happened in 2019, he was searching for everything related to SCI’s, and that’s when he came across my blog. He made a comment on one of my posts, I responded, then less than a year later, we fell in love and have been together since 2020. We met in person for the first time, Labor Day weekend. He’s coming on Thanksgiving and Christmas too!

Jay and I in my backyard

According to Wikipedia “The Minneapolis Institute of Art (Mia) is an art museum located in Minneapolis, Minnesota, United States. Home to more than 100,000 works of art representing 5,000 years of world history, Mia is one of the largest art museums in the United States. Its permanent collection spans about 5,000 years and represents the world's diverse culture across six continents. The museum has five curatorial areas: Arts of Global Africa, Global Contemporary Art, Asian Art, European Art, and Arts of the Americas.”

I had so much fun! The last time I was at a museum was for a grade school field trip, and I don’t remember any of it. My nurse and I went, just to do something fun besides going outside, out to eat, to the mall etc. There are 3 floors, and we barely made it through one floor, the 2^nd. My favorite painting was (1 of 4) in Vincent van Gogh’s series Olive Trees. This is a photo of me between Claude Monet’s Grainstack (looking at the photo, on the left) and my favorite painting.

Jenni

Here are 2 of my poems:

Expansive Roots

My limbs are rough, full of brown bark

despite not moving by themselves

they may falter in times of trouble

as my presence in the world matters

 

While my cracks show in harsh winds

delving deep into their structure and use

in my trunk’s importance in this world

proving I matter in the ecosystem

 

My roots are an expansive link

embedded in the dirt of Mother Earth

where I feed my self-worth within times

when I’m strongly supported by my presence

 

I am connected to neighboring life forces

stemming out reaching for provision up top

engaging with my family of surrounding trees

to construct a forest of my ancestries

 

With every breath I stretch into the clouds

as my experiences in life are deeply felt

although I have a few tangles to work out

with each year adorned with a new ring

 

My protection is my bark and layers

covering me so you can’t see

any of my tragedy or loss I’ve endured

that comes with being a dead tree

Canadian Wildfires

The city groans as it chokes on dust

exhaling gray, drifting smoke

hazy skies and air-quality alerts

obscuring the sun, covering towns

Like a curtain dropping from the sky

Canadian wildfires pollute Minnesota air,

strangling every tree in sight

spreading freely through dense conifers

A silent hold upon the once crisp atmosphere,

outdoors is forbidden for weeks

difficult to contain, as health is strained

harder for asthmatics to breathe

Embers sweep into drought-stricken fields

delicate lungs copiously cough,

hushing children’s play through the disorder,

as orange flames leave farmers at a loss

Abilitech Assist

There is always new technology evolving for people with disabilities. I recently came across a device called the Abilitech Assist. It is the first "powered orthotic device with shoulder assist that is designed to support users' functional activities of daily living. Powered by springs and motors, the hybrid system is custom calibrated to allow for independent movement to lift objects weighing up to 12 ounces. The body vest, with integrated lumbar sacral support, makes the device feel weightless and allows for extended use."

By assisting flexion of the shoulder and elbow, it has the capability to make it easier for people with upper-limb weakness or injury to improve their movement. For example, lift a utensil or pop can up to their mouth. Recently someone from their company came out to my house to show me the device, hoping that it would work on me. Although I don’t have enough muscle movement for me to be able to use it.

The woman who came out told me they are working on other devices that would allow someone with my level to improve motor function. Here is a picture of the Abilitech Assist:

Jenni

Transferring

In order to transfer from my bed to my wheelchair, I use a ceiling lift. It’s a motorized device that lifts and transfers me from point to point alongside an overhead track. Some tracks can be ceiling mounted or freestanding. Mine is screwed into my ceiling and goes all the way to my bathroom. By using a string system, the track can be switched to go from my shower, toilet or bathtub. I mostly use it to take a shower and get in my wheelchair. Here are some pictures of what it looks like:

This is where it charges.

This is where the track changes from one area to another. To the left is my shower, straight ahead is the toilet and to the right is my bathtub.

The lift can also be used to weigh myself. I have a device that hooks from the lift to the bar; when I am in the sling, it shows my weight. In order to get it completely accurate, we need to subtract the weight of the sling and bar. Here is a picture of what the scale looks like:

Jenni

Equipment and Power

Along with being a quad comes a lot of equipment that needs to be plugged in. I think I have at least seven power outlets in my room, not including two power strips. The first picture is of one of the power strips in my room. Each plug goes to some piece of equipment that I need and use. Whether it be my ventilator, my bed, or my suction machine, it's all important. Therefore, so is electricity.

I depend solely on electricity to stay alive because I'm on a ventilator. If there was no power, my ventilator would only run for 30 minutes or so on an internal battery before it would shut off. However, it is able to be plugged into an external battery. The batteries that I use are lithium batteries and can last about 3 to 4 hours. I plug my wheelchair vent into the external batteries when using it. It allows me to go places without having to be plugged in to an outlet.

The second picture above is of my battery shelf. It consists of backup batteries, battery chargers, and an oxygen tank on the bottom shelf.

When I use the ventilator in my room, it is plugged in to an outlet. One thing I have to worry about being on a ventilator is not having power. If the power did go out, I have a back up generator that's big enough to run the electricity in my room. It takes about 7 seconds to kick in after the power goes out. This allows me to stay plugged in in my room and not have to use external power to run my ventilator. Having a generator makes it a little less stressful when the power goes out.

Jenni

Standing Frame

I thought I would give an update on my standing since it's been a while. The last couple of months I've been going in my stander 2 to 3 times a week. I no longer do it with physical therapy; my nurses and PCA's are now trained in and are able to help me with it. This leaves more time for stretching and strengthening in physical therapy. I also was able to cut down on physical therapy from four times a week to three.

When I first started using the standing frame last year, it took me many times before I was able to get up to 90°. My body had to get used to standing again. My blood pressure would drop as well making it harder to stand for long. After a while, I began to get used to it and was able to get up to 90° and also stand for a longer period of time.

For some reason in the past few months I hadn't been able to get up to 90°. In fact I was only able to get up to about 60°-70° before my blood pressure would drop and I had to go down. Plus, it took me about 30 to 40 minutes before I could even get up to that. Yesterday, I was in the stander for about an hour. I was so excited because for the last 15 minutes I was able to be up at 90°. I probably could have stayed longer because my blood pressure was still fine except that I got too tired and that's why I chose to sit back down.

I don't know why or how I was able to get up to 90°. I went in the stander this morning and was only able to get up to about 65°. I'm hoping I'll have many more days like yesterday. I thought that the more times I stood the more my body would get used to it and my blood pressure would adjust, but I guess I have to be patient. It's great that I'm even able to stand in the first place. The other thing is that 60° is still weight-bearing, so even if I don't get up all the way every time it's okay.

Jenni

My Ventilator

My ventilator is the most important thing in my life. It is what's keeping me breathing; keeping me alive. I have been getting a lot of questions about my vent, so I thought I would share with you the inner workings of my ventilator and how it feels to be on one.

I have two separate vents, one at bedside and one on my wheelchair. This makes it a lot easier to get around. When I get up into my wheelchair in the morning, all I have to do is switch to my wheelchair vent and off I go. The two ventilators are fairly similar except that my bedside vent has more features and is a higher model. Therefore, they are a little bit different from each other. That is why they have different colored tubing.

Next, I will talk about the vent itself and how it works. The first picture above is of the whole contraption. The second picture is of the actual machine. It is basically like a computer. It remembers everything that ever happens, including time and dates of alarms. The vent works fairly smoothly. The machine itself pulls air into the side of the vent and then forces the air through the tubing, into my lungs. That is one full inhale breath. Some of the air exhales out of the PEEP (or exhalation) valve on the tubing and the rest exhales either out of my nose or mouth, depending on if I'm talking or not. I receive 18 breaths per minute and the amount of air I receive per breath is 700 mL. This is called the title volume.

Attached to my vent and tubing is a humidifier chamber. The third picture above is of the humidifier. The chamber has to be plugged in to work and when it is turned on, a part of it heats up to a desired temperature. It then heats the air being pulled in from the ventilator going into my lungs. There is a bag of water attached to the humidifier to moisten the air as well (the fourth picture is of the water hanging up). If the humidifier is not plugged in, the air is fairly cold. There is a humidity sponge attached to my wheelchair tubing that moistens the air when the humidifier is not plugged in. It gets taken out when the heat is turned on. If there is no humidity going into the tubing and no humidity sponge, the air is very cold on my lungs. It feels like when you go outside in extremely cold weather and take a deep breath and feel that icey pain in your lungs.

The vent will alarm in many different occasions, especially if something is wrong. If the tubes pop off anywhere along the vent, it will sense the leak and alarm. It will display "Low Pressure" on the screen of the vent. The ventilator is hooked up to a battery that lasts about 3 to 4 hours. When the battery drains out, the vent will alarm and display "Low Power", letting you know that you need to change the battery. The internal battery on the ventilator only lasts about 45 minutes to an hour.

At first, it was hard to adjust to being on the vent. I had to learn to breathe and talk differently. Now it feels as normal as breathing regularly. I am able to do something called neck breathing for about five minutes when the tubing is taken off. This allows me to change my shirt and switch ventilators more efficiently without having to hurry. If anyone has any other questions that I have not answered in this post, let me know either by e-mail or posting a comment and I will try to answer them.

Jenni

Yay for Me!

They ended up fixing my wheelchair yesterday. After a month and a half of my wheelchair not working, I'm finally able to drive it myself. I have gained some independence back and I don't have to rely on others to help get me around places.

Today my nurse and I went for a walk (roll rather) around my block. It was weird being able to do it myself again, but it was a lot of fun. I am hoping that nothing like this happens to me again anytime soon or ever.

Jenni

Update on My Wheelchair

I don't know if you remember, but about a month ago I wrote a post about my wheelchair not working again (you can click here to read my post). Well, it's still not working.

The company in California called New Abilities told me to send in the display box (the screen that I look at to see which mode I'm in). I did as they asked, they supposedly repaired it, and then sent it back. When I hooked it back up, my chair still wouldn't work with my tongue touches. Then they told me to send in the entire black power box hooked up on the back of my chair to about a dozen cords. Right, how was I supposed to disconnect the cords and be sure that I knew how to plug them back in again.

Because the black box is my main power supply to my wheelchair, I had to be sure that when they unplugged it, that I would still be able to have power in my chair. I ended up having to go to reliable medical; they are the place where I got my wheelchair. They unplugged all of the cords from the box and marked them so I would know how to plug them back in again. They were able to get power to my wheelchair without the box so I sent it in to California and it should have gotten there by today. Now it's probably going to take about another couple of weeks before they can repair whatever's wrong with that box and then send it back to me. I'm so frustrated with this chair thing. I am contemplating getting something else hooked up to use to drive my wheelchair.

I don't know if any of this makes sense to any of you. I'm confused myself. Probably because I can't see the back of wheelchair when I'm sitting in it.

Jenni

Questions Answered

A couple of posts ago I had said that anyone who had questions could e-mail me with them and I would answer them in a post. Someone did just that so I decided that everyone should be able to read the questions and my answer to them.

Question: 1.) What is the purpose of what looks like different colored pieces of tape on your tubes? I've seen it like that in a number of pictures and was just curious about it.

Answer: The things on my tubes are velcro clips. They are put around my tubes and then clipped to my shirt to hold the tubes in place. If they are not clipped, my tubes pull down on my trache inserted in my neck. I am not sure why they made them dark green. I wish they had all sorts of colors so I could match them with my wardrobe.

I also have trache ties that go around my neck and then around my tubes at the spot that they hook on to my trache to keep my tubes from popping off. This is a big safety mechanism. Many people who are on ventilators do not have trache ties to hold their tubes on. It can be very dangerous and has sometimes led to death because the tubes pop off with no one around to put them back on.

Question 2.) How do you go about putting a non-buttoned shirt on? It may seem like an odd question but I haven't been able to come up with an answer.

Answer: I have 24/7 nursing care and a personal care assistant (PCA) every day from 7:30 AM to 11:30 AM to help assist the nurse with my cares. The process that I go through to get dressed and undressed is actually quite simple, however, it does take a lot longer than it would for someone with the ability to dress themselves.

I think what you're trying to get at is how I get the shirt over my tubes. Something that many people do not know is that my tubes detach from my trache and I am able to neck breathe without them. Neck breathing is a process where I pull air in through my trache essentially taking a breath on my own. The longest I have neck breathed for is about 40 minutes. That was when I was practicing daily. I have not practiced in a long time and am now only able to neck breathe for about 10 minutes; definitely enough time to take my shirt off and put a new one back on.

The picture above is of me with my tubes off. I think I look different without my tubes. I have never actually taken a picture of myself with them off.

Jenni

Not Again!

There is something wrong with my electric wheelchair again. For some reason I am not able to drive it myself. I called the company in California and they told me there might be something wrong with the display box and that I should send it in to see if they can repair it. And if they can't? Where will we go from here? Why does this keep happening to me? What a bummer! Just when I got my independence back and able to drive it myself again something goes wrong. I asked the guy if these things only happen to me because it seems like I have a lot of problems with this wheelchair. He didn't say anything which makes me think that I am the only one who has bad luck with this particular system. Needless to say someone else is driving me using the joystick on the back of my wheelchair. It's probably going to take a couple of weeks to send it there, have them repair it, and then send it back. I know I am frustrated but I also know that I have to have patience so that this matter doesn't consume me.

Jenni

Speech Recognition Software

You may have noticed that I haven't been doing as many posts lately. I apologize for that. On Friday, my computer froze up and I had to do a hard shutdown on it. Somewhere in the process, my voice files for my speech recognition software Dragon NaturallySpeaking got either erased or lost. I was without the program for a day and ended up having to change something and then retrain it. It still wasn't 100%. It was very difficult to type without it making mistakes. A tech guy came out yesterday to help me fix it and it's pretty much back to normal. I appreciate your patience and will be up and running with many more posts from now on.

Because of the poor speech recognition, I have changed my e-mail address from yahoo to Gmail. For those of you who have my e-mail address, the beginning part of it is still the same, it is just at Gmail.com instead of yahoo.com. For those of you who don't have my e-mail address, the new one is jtic20@gmail.com. You can also look in my profile to get it.

Jenni

Exciting News

I finally got my electric wheelchair back yesterday. My mom went and picked it up at the company because otherwise they wouldn't have been able to deliver it until this morning. I have an extremely busy day today. I will probably be gone for six hours. They wouldn't have been able to drop off my chair before I leave at 11 AM to go to school. After school, at 2:30 PM, I'm going to get picked up and go to the hospital for a doctor's appointment. My appointment is at 3:30 PM and I probably won't get home until five o'clock or so. I couldn't imagine being out in my manual chair and having to be pushed for that long.

I am so excited to not have to be in my manual wheelchair anymore. I was grinning all evening knowing that I wasn't going to have to be in it today. My butt, back, neck and anything else you can think of is hurting because of it. I have also lost some independence by not being able to move my wheelchair by myself. I just got my electric wheelchair back but it feels like I got a new car. Anyways, I'm hoping that nothing goes wrong with it for a long long time because I don't ever want to have to go through what I've been through the past week and a half.

Jenni

"Of any stopping place in life, it is good to ask whether it will be a good place from which to go on as well as a good place to remain."
-Mary Catherine Bateson

Bummer!

I have good news and bad news. The good news is the guy from Reliable Medical (the place I got my wheelchair from) came today and found out why my wheelchair won't recline back up. The bad news is that it's a part that they have to order and it will take up to two weeks. What a letdown that news was. I guess the actuator went bad, whatever that means. It was still in a reclined position when he took it away back to the shop. If he would have been able to get it into an upright position, I could have still used it and just not reclined back. I'm going to have to use my manual wheelchair until they can get my electrical one fixed. This last week has really made me appreciate what little independence I have. Every bit counts, including being able to drive myself around. I'm hoping everything goes okay on my outings when my nurse has to push me.

Jenni

Wheelchair Troubles

This past week has been a little hectic regarding my wheelchair. On Tuesday, the battery for my Tongue Touch Keypad (how I run my wheelchair) ran out. It would have been okay if I had had my other one here. I have two Tongue Touches, however, a couple weeks ago I sent my other one to California to get the battery replaced because it had run out. So Tuesday, when the other Tongue Touch battery ran out, I was stuck having someone else drive me around using the joystick on the back of my wheelchair.

Well, I received my first Tongue Touch that ran out of battery Friday afternoon. That would've been great news, however, earlier that day I went to a doctor's appointment and had some more wheelchair trouble. For one of the procedures I had to recline my chair back. I also have a tilt mechanism that I wasn't using at that time. When the procedure was finished, I went to have someone recline me back up but it wouldn't go. I was stuck in that position. We had some people from the hospital try working on it for a while but couldn't get it to go. I also had someone from the company that I got the chair from come to the hospital to see if they could fix it. No luck. I had to call for a ride home and asked them for the biggest van possible. They said it was 45 minutes away. Needless to say I was away from home for seven hours and stuck in a recline position for most of the time.

I am now using my backup manual wheelchair. It is extremely uncomfortable. I can't believe I used to use this thing. I went from being independent and using my Tongue Touch Keypad to get myself around to having someone drive me with the joystick and then ultimately having someone push me around. I am miserable but I am surviving. Reliable, the company that I got my chair from, is supposed to be coming out on Monday to pick up my wheelchair to see if they can fix it in the shop. I'm hoping they can get it done soon so that I don't have to use my manual chair anymore. It isn't fun having to be pushed everywhere. Oh well, what can I do. I guess I can make some light of the situation. At least I have a wheelchair at all and I'm not stuck in bed.

Jenni

Another New Record

Today I went into the standing frame again. It took me about 10 minutes to get to 90°. My blood pressure didn't even drop on the way up. I was very careful to go up slowly so that it wouldn't. Once I got up to 90°, I stood for 33 minutes, beating my old record of 28 minutes. I know it's only a difference of five minutes, but when I'm fighting fatigue, sore muscles, and my blood pressure, every minute counts.

I am so excited to have the opportunity to stand. Many people are unable to get medical equipment because of expenses. I know what it's like to go through the process of trying to get something paid for and then getting a denial saying that they won't. I just keep on trying. My ultimate goal is to start a nonprofit organization for people with disabilities who need medical equipment and are unable to get it paid for. For example a wheelchair, stander, bed, shower or bath chair, or any other type of supplies they may need. My non-profit organization will also include funding for house remodeling, physical or occupational therapy, voice activation devices, or any other type of equipment or service that may make someone with a disability more independent or their life easier. It may be a long way out, but I know it will happen and I am determined to help others in need.

Jenni

"To the world you might be one person, but to one person you might be the world."
-Anonymous

Standing Again

Today I stood for the first time since the week before my recent surgery on December 2. Everything has finally healed and I was able to stand for 28 minutes (14 at 70° and 14 at 90°). Normally, when a person stands after not standing for a while, their blood pressure will usually drop and they will not be able to stand for very long. That's exactly what I thought would've happened to me. I went in the stander expecting the worst and got out feeling great.

My normal blood pressure is usually around 100/60. The lowest my blood pressure got today was 68/43. That is extremely good for me considering my lowest so far in the stander was unreadable (yes, I did almost pass out). The lowest readable blood pressure was 44/31. That's when my eyes start to go black. Probably not a good thing. I am very excited to be standing again. I hope my blood pressure stays where it's supposed to.

Jenni

"The present is the ever moving shadow that divides yesterday from tomorrow. In that lies hope."
-Frank Lloyd Wright

The Power of Technology

For those of us who lack independence, technology can be a powerful thing. It frees us from our inability to communicate otherwise. It is our way of gaining back the independence that we lost or do not have. Technology is growing every day, allowing us to express ourselves and have the independence to do things that we would not otherwise be able to.

I myself use technology for daily activities. In order to type and move freely through the Internet I use a voice-activated program called Dragon NaturallySpeaking. I am able to speak into a microphone and use commands that allow me to independently use a computer. It is so easy to use and cool that you can just say what you want and have the words magically appear on the computer. If you click on the link, there is a video demonstration of how Dragon works.

Also, in order to have independence while lying in bed, I use a voice-activated Environmental Control Unit by Quartet Technology Inc. This box and microphone give me all the independence I need to control things in my environment. It is capable of controlling anything electronic or that can be plugged in. I use it for my radio, phone, DVD player, and TV. It is able to control lights as well, however, it doesn't work with my lights because it is not on the same strip. If I wanted to, I could have it control my bed, lamp, fan etc. There are endless possibilities. It is very easy to train and responds fairly well to my voice. By the way, his name is Denver. He repeats everything I say to him. He is very polite and says excuse me when he doesn't understand what I say.

The last piece of technology that I use every day allows me to move freely without help. It is called a Tongue Touch Keypad by newabilities. By using my tongue, I am able to drive my wheelchair with ease. The Tongue Touch Keypad fits in the roof of my mouth similar to a retainer. It has nine buttons to choose from and there is a menu screen with a choice of nine options. If I push the back left button (chair), I will be able to move my wheelchair. If I push the front button (position), I can tilt or recline. There are other features to the chair that work with the Tongue Touch that I don't have. If I wanted to, I have the option to use the Tongue Touch for my computer and environmental controls such as the lights and TV. However, these fancy features come at a cost. I would have to buy each one separately. If you click on the link above, the newabilities website will show you all the features and tell you about the Tongue Touch Keypad.

The Tongue Touch Keypad does have its faults. Because it is a wireless device, other things sometimes interfere. I may be in an elevator and if I'm not on the park mode, the interference will push buttons and make the wheelchair start moving by itself. Funny sounding, but not fun when I'm driving and the interference will make it so I can't stop and I run into walls. I guess it is kind of funny when I think about it after the fact.

I am thrilled to have this type of technology in my life. It is only a matter of time before they come up with something new that will help me become more independent. Often times I have people guess how I drive my wheelchair. Most of them say "with your eyes" or "with your mind". It sounds crazy but this technology is out there. I watched this on 60 minutes a couple of weeks ago. There is a cap that fits over your head and measures your brain and thoughts. It is able to determine which letters you want to use to type on a computer just by you thinking it. I wanted to post the video, however, there was an error. Click here to see the video called "Harnessing the Power of the Brain".

Just think of the other possibilities. I am excited to have shared this technology with you. If you would like to purchase Dragon NaturallySpeaking or the Environmental Control Unit by Quartet, or if you would like to find out more about assistive technology, click here to contact The Speech Gurus.

Jenni

Getting Stronger

I stood for 28 minutes yesterday. I'm excited that my blood pressure is finally compensating when I'm standing. It will drop at first and then rise after a couple of minutes when my body gets used to being straight up at 90°. Yeah for me!

Jenni

Standing at 90°

Hello everyone.

I want to update you on my standing. I have stood about five times and I am now on a set schedule of standing twice a week in physical therapy. My longest time at once was 15 minutes. I didn't think I would be up that long so soon. I have to keep the blood pressure cuff on just in case. I usually have to take it about every two minutes, because sometimes my blood pressure can go down without me knowing. It is easier and I find that I can stand longer in the morning than in the afternoon because I'm not as fatigued from daily activities. My blood pressure goes down more in the afternoon because I do get so tired.

I'm excited to be able to do it for longer like 30 minutes but it takes a while to build up to that. Although, I do think I am already starting to feel the benefits. My back hasn't been hurting like it usually does and I feel like I have more energy during the day. Standing helps prevent osteoporosis and also strengthens bones and muscles. It will also help strengthen my back. The picture is of me standing in my bedroom. I'm 5'8", but the stander is up off the ground so I stand taller than everyone who is helping me. It is nice to be able to see the top of people's heads instead of up their noses.

Jenni

"Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow"."
-(This is a quote from a plaque hanging in my room. I don't know who the author is.)