What Happens In An Emergency?

Every person with a disability has different needs in an emergency or matter of fact situation. It’s crucial that each person take stock of their own needs and required supports. This includes being able to assess the situation and how they can meet those needs depending on what the situation is. As far as me having a spinal cord injury, there are certain things that I need that may be different from others.

It’s very difficult on everyone when one or more of my caregivers can’t work. Especially when there is nobody to replace them. It is usually up to my family to help me, do my cares, and make sure nothing goes wrong. Since I require 24/7 nursing, especially if something went wrong with my ventilator or tubing, it’s very important that someone is always within earshot. This is one of the positives to having a nurse with me all the time. Although I don’t always want someone with me everywhere I go, I need every hour I can get with them.

What do I do if something comes disconnected on my vent or tubing? If something comes disconnected, the first thing that happens is my vent will alarm. That notifies the persons taking care of me that something has come disconnected but doesn’t tell you where it is. Then if they can’t find the area within a couple of seconds, they grab the Ambu bag and start bagging me. It’s difficult to bag me and find where my tubes came apart at the same time, so if someone is around to help it’s the best scenario. Although, if not my nurse has to do both at the same time.

Every place I go, my nurse comes as well. If I’m just going outside for a roll, they load my wheelchair with my portable suction machine, oxygen, and a backpack that has supplies in case of an emergency including an Ambu bag. If I’m going to an appointment, I still bring the suction and oxygen, although instead of the backpack, I bring a rolling suitcase. In the suitcase is everything that’s in the backpack along with other supplies, because I take it when I’m going to be farther away from my house and for a longer period of time.

Along with emergency and extra supplies, my nurses pack their charting sheets along with a travel chart. In it is an up-to-date list of all my prescription medicines. Included is their generic names and the dosage amounts. Also, there is a list of my allergies. I also bring my medical alert card with information about my medical needs, along with my insurance and medical assistance card. It’s important for me to bring along a list of all my doctors and emergency contacts as well, just in case.

Jenni

Strength from Within

Accepting change is one of the most difficult things to do. As far as myself since becoming a vent dependent quadriplegic, I still struggle with not being able to manage my own cares and have control of my body. I have nurses 24/7, along with constant interruption and lack of independence. Because this is part of how things are, my life’s goal is to try to succeed in different ways.

Learning to live differently from how I used to has been a challenge, but not impossible. Throughout the years I’ve realized that it’s not just about being able to survive, it’s about thriving as well. I know it’s hard for many people going through tough situations to believe that despite the struggles that go on there are positives as well.

Either from others in similar situations or from people around, I’ve learned that you can’t always manage what happens in life. Despite it you can decide what you do with your life afterwards. Incredible change occurs when you decide to take control of the power you do have instead of craving control over what you don’t. In past experiences, just going through the motions isn’t always enough. Sometimes it takes a little strength from within to boost up your life.
Jenni

"This is the time I will be stronger, braver, kinder and unstoppable. This year I will be fierce. With the new day comes new strength and new thoughts… Accept what is, let go of what was, and have faith in what will be."

Registering Brody

This is his photo ID that I have to carry around with wherever we go.
It's a picture of Brody when I first got him.

 

I got my dog Brody September 2012 when he was about 9 months old through a breeder. On December 20 Brody turned 6 years old. He actually comes from a family of show dogs but didn’t meet the cut. Although I got him at a slightly older age, he still adapted well and was all ready set up for a home environment.

Since I got him, he’s always been my side, a companion who’s helped me through some tough times. Over the years, Brody has adapted to my disability. He knows when something’s wrong with me and also provides comfort if I am in need of a little TLC. He’s also been great for helping me with independence and getting out of the house more. I love taking him for walks outside around the neighborhood, no matter what the temperature is.

Even though I didn’t initially get him for this purpose, I recently certified him as a companion dog. Now I can take him anywhere with me as long as I have his vest on and card with me. There is a difference between a companion and therapy dog. Companion dogs usually don’t work. Instead the principal service that companion dogs provide is simply companionship as a pet, rather than usefulness by doing specific tasks. While service dogs are trained to behave flawlessly in public, companion dogs may or may not be as well-behaved.

Companion dogs don’t need to have special training, although Brody has some behavioral issues. In order to better help him with some of his anxiety along with coach me with training methods, I recently hired a private trainer to come to my house. My hopes are to get him comfortable with other people and dogs. She is going to work with me to get us ready for him to go out in the public. I’ve already learned some things about him that I didn’t realize before.

For example, I always thought he had aggression towards other people and dogs because he was protecting me. He barks at other dogs, strangers and people walking in the woods. Although she told me that he actually has "fear aggression" which means that he is afraid so he goes into a mode of needing protection by barking, nipping, and even hiding next to my wheelchair. Instead of trying to protect me he was looking for protection from me.

The trainer gave me some tools to work with him in order to listen to me better so that I have more control over situations that occur. Hopefully over time I will be ready to bring him places outside my home without hesitation or having him fearful. I’ll update everyone throughout on how the progress is going.

Jenni

Getting Independence Back

The most valuable thing to me to have in my current situation is independence. It is something that is extremely hard to get once you've lost, so when things come along that can help that I hold onto them. When I finally get it back and then lose it again, it can be frustrating and saddening. Losing the ability to drive my wheelchair myself has been extremely tough. Right now I'm in the process of trying to figure out which way I'd like to use to drive a new power wheelchair.

On Tuesday Key Medical brought me a power wheelchair with a sip and puff to trial. After telling me how to use it, I tried it out for the first time in my room. It was not at all like I expected; harder actually. I tried it for a little while, got tired and sore cheeks, and was extremely frustrated that it wasn't going my way. It would have been easier to try it outside or something in a bigger space, but it was extremely hot and humid outside. At first they said that they were going to take it back with them when they left. I said no because there's no way I can know after an hour if it's going to work or not or if I like it. I was able to keep it until this morning at around 10 AM. I'm extremely surprised that they wouldn't do a longer trial period.

Yesterday I took it outside to mess around with it. After a while, I started getting the hang of it but was still frustrated. I know it takes a while to get used to something and learn it, but I just felt like no matter how long I tried it, I was never going to get it. I want to say that I loved it and that that's what I want to use, but I am unable to. Without something else (besides the tongue touch) to compare it to, I just don't know if it would work out for me to use. So I talked to them today and they are now going to try to get a wheelchair with a chin joystick for me to try; although I'm not quite sure how long that will take.

After I choose which of the two ways I want to use to drive my wheelchair, then they can begin the process of ordering it. It will probably take a couple of months before medical assistance will approve to pay for the chair. Only after we go through this entire process can I begin to get my independence back. I'm hoping and praying that everything works out okay and then it can be as quick of a process as possible.

Jenni

"This Too Shall Pass"

It's been an extremely busy past six weeks. My online class has required all of my time and energy. I've been stressed to the max and I'm glad that all I have left is my final exam, which I can either take the 15th or 16th. Then I will be able to relax and enjoy the next six weeks before I start with fall semester.

I'm still waiting to hear about getting a new wheelchair. Right now they are trying to get a loaner power wheelchair with a sip and puff attached for me to trial. Along with the stress of my class, I've been dealing with the loss of independence. I'm still in a manual wheelchair right now that I'm renting. Not being in a power wheelchair and able to drive it myself has also taken a toll on me. I feel myself getting more depressed each day and not wanting to do anything. It's hard to go anywhere anyways in this situation. None of my equipment that I have to bring out with me when I go places fits on this chair like it used to on the other one. My vent is literally hanging on one of the handlebars and my tubes are tied to the other one. The suction machine, oxygen tank, and emergency bag have to be carried by someone else. Along with someone pushing me, that's a lot to deal with.

Hopefully "this too shall pass."

Jenni

Using My Movement

I thought I'd show a video that was taken when I was at Gillette Lifetime Clinic for an OT appointment. In an earlier post, I talked a little bit about the environmental control unit called Relax II that I could run with my thumb movement. The pictures above are of the system and the micro light switch that plugs into it. The video below shows me pushing the switch and controlling it all by myself. A single tear started to roll down my cheek when I was doing it. This is the first time that I've actually used my movement to do something, even though it wasn't set up to anything. I was having trouble putting it on my blog so I uploaded it to YouTube. Check it out!



They let me take it home for a trial, but there's a slight problem. My thumb doesn't always cooperate so I'm not able to do it every time. Plus the switch is a little too sensitive so if my thumb is just a little bit tight it holds the switch down which makes me unable to use it. Hopefully when I get my new wheelchair they can mount something that comes around to my cheek and I can use it that way.

The picture below is of the page turner that I want to get. I can also use the switch to control that. Jenni

Finding Independence

A week ago I went to Gillette Lifetime clinic in St. Paul for an occupational therapy appointment. My plan was to see if they could help me find some things that could make me more independent.

The first thing we talked about was an automatic page turner. A switch could be attached to it that I could push with my cheek or chin to turn the pages. I picked one of two options that I liked. I didn't realize it but page turner's aren't cheap. It would cost a little over $3000 for it. The other one was almost twice as much. I'm sure I could get an outside source to pay for it. It would be great for my school textbooks. I've tried reading books on my computer before but it's just too difficult. It hurts my eyes to look at the screen for too long. I also thought about a portable e-reader such as the Amazon Kindle or nook from Barnes & Noble, but someone would still have to push the button to turn the page. They don't have anything out there like that that's voice-activated or able to operated by a switch.

The second thing I looked at was an environmental control unit that can be activated by any type of switch. When I was there, I found out I could operate it by a switch using my left thumb. The only problem is that my hand doesn't always cooperate and if it's tight, I'm unable to move it. The other option is to mount the switch to my wheelchair and have it come around to my cheek. I could then push my cheek out using my tongue to hit the switch. That's probably going to be the best option.

Sadly, New Abilities, the company that I got my tongue touch keypad from, went out of business. Apparently it happened last summer. I received a letter from them at the time that explained this but when I called, they denied it. I'm guessing they just wanted people to keep sending them money because they didn't have any funding left. When I was at Gillette, the OT confirmed with me that they weren't in business anymore and that they had called telling them not to refer anyone.

The third thing we talked about were other options for driving my wheelchair. The three that could possibly work for me would be a sip and puff, a chin joystick or head control. I need to call another company, Reliable, to set up an appointment to go over this further. I think I might try the sip and puff first because I've tried the chin joystick before and I don't think I want that and also I don't have much head control so that way might be hard.

*Note: Wheelchair Troubles-I wrote this post a few days ago but hadn't published it yet. Two days ago my electric wheelchair all of a sudden stopped working. After looking for a while, we found a cord that had been pinched and had exposed wires. That's the reason the electric part in the chair went out. It is able to be moved manually, but it is very heavy and hard to move. Also, the tilt and recline mechanism is out as well. The last two days I've had to use my manual wheelchair. It is the most uncomfortable thing to sit in; I don't know how I did it for 3 1/2 years. I'm going in to reliable medical tomorrow so they can hopefully replace the cord. Then I'm going to talk to them about other options for driving my wheelchair.

Jenni

Motorcycle Ride Video

For those of you who may remember, last summer I took a ride in a motorcycle sidecar. I had someone take a video of it but wasn't able to put it on my blog. Well, I finally put it on YouTube. If you want to read the post that I did on it before click here. You can make the video full-screen by clicking on the button with four arrows at the bottom right hand corner of the video. If you want to view it from YouTube click here and it will take you directly there.



Jenni

Repaired

I had someone wrap a piece of electrical tape around some exposed wire on the cord to my microphone. It works! I'm hoping that it was just a one time glitch and that it doesn't happen again. I was so frustrated yesterday trying to get it to work. That's my main mode of communication, not to mention how I do my home work for class!

Last Friday I had Botox injections in my neck and shoulders. It'll take a few more days before I'll start feeling the full effect and for my muscles to loosen. On Sunday I went to church in the morning and then watched the Super Bowl. I wasn't really rooting for any team, but I was watching the commercials. I actually didn't think they were that funny this year compared to other years. Yesterday I went to my psychology of religion class. I'm really enjoying the discussions.

Jenni

Out of Order

My nurse is typing this post for me. My microphone that I use to type with my speech recognition software is not working. If I am unable to fix it, I'll have to get a new one. In the meantime, I won't be able to do any posts independently.

Jenni

Reading Books

A couple of weeks ago I finished reading The shack by William Paul Young. I thought it was a great book! It was very well written and executed. For my psychology of religion class, we have to read two books out of five that the teacher picks. I'm already more than halfway done with the first book. After reading each book, we have to post five questions in an online discussion board that we have.

Even though I love to read, it is difficult for me because someone has to be right next to me to turn pages. I'm hoping to get a page turner soon. The only thing with that is that I would have to have some sort of switch to operate it. I could hit the switch with my head; I don't think they make that page turners voice-activated. I looked into something like an e-book where I can download books on it. Then I have the problem of someone pushing the button to turn the page.

Jenni

Questions and Control

Are you cold? Do you want a blanket? Are you hungry? Do you want something to eat? Are you thirsty? Do you want some water? Are you comfortable? Do you have any pain? These are just some of the many questions that I get asked by my nurses on a day-to-day basis.

Sometimes I feel like they don't trust that I'll say if I feel or need something, but I know that they're just doing their job; trying to make me happy and as comfortable as possible. It does get annoying though to constantly be asked questions all day. It also makes me feel like I'm not in control. Almost like I'm giving something up by answering yes or no instead of asking myself.

Maybe that sounds strange but one of the reasons is because I rely so heavily on others to do things for me, that I try to hold on to every bit of control possible. By directing my cares, telling people what I want done, when I want it and how to do it makes me feel some sort of peace in knowing that I am the one running the ship. That people aren't just doing stuff to me or for me without me asking first.

I know all of these feelings are completely normal, especially for someone who's lost so much. I try to make sure that I'm not being offensive when telling someone that I'll let them know when I need something. They are just doing what they are here to do, and that is work for me.

Jenni