First Session at ABLE Program

I had my first session at ABLE yesterday. My mom was able to drive me in our van and pick me up. Sometimes I will use transportation, but for the first session it was good getting the feel for how much time I needed, including drive, transfer and session. When I got there, I saw that there were two physical therapists that would work with me at a time. Then the main PT talked to me about which two exercises I was going to do, and then went through a plan of the order and how long each one would take I would do. 

Using the Bicycle

The first exercise I did was called guided exercise. They transferred me to a bench and laid me down on my back. Then they strapped my feet to pedals like on a bicycle, although my legs were bent upwards. The therapists stood on each side of me and moved my legs simultaneously like I was peddling. After about 10 minutes, they strapped my arms up and as they moved my legs, my arms moved at the same time as my legs. Overall, I did it about 17 minutes, although in the future the goal is 20-30 minutes.

After this, they transferred me back to my chair and I repositioned it alongside a table mat. Then moved me to the mat so I could use electrical stimulation. They put electrodes on my abs, obliques, lower back and between my shoulder blades. After hooking them up to a machine that made them stimulate, the PT started with firing each spot separately until I could feel it. Then made them all go simultaneously, which made me spasm and worked my muscles. I did this for about 40 minutes, but the goal is 60 minutes total.

At the end of the session, my nurse said that before I went, she was nervous about how everything was going to work out. Then, the PT admitted that he was too, especially because the center had never had someone on a ventilator do any of the exercises before. I was excited but also a little bit nervous. Mainly for the fact that I wasn’t sure if everything would work out okay and if I would have the stamina to complete everything.

I’m glad I started and stuck with it, because everything worked out great! It took a while for me to get situated with each exercise. Next time, I’m planning on getting to Courage Kenny about ½ an hour earlier so that I have time to get through every exercise goal. After everything, I was very tired, and was exhausted as soon as I got back in bed. I slept while doing range of motion and even 30 minutes after. Usually, after I transfer into bed, I start range and it takes about half an hour and then I sit up and go on my computer for about an hour in half.

I am very hopeful that after the first six weeks session that I will have improvements in overall health, fitness, strength and possible feeling. One of the biggest goals is to gain movement. Although I may have a while until I get to that goal, I know with some hard work and dedication, that day will come.

Jenni

“Strength grows in the moments when you think you can’t go on but you keep going anyway.”

-Anonymous

ABLE Program

The other day, I went to Courage Kenny center for an assessment. I was there for four hours, from 12 PM-4 PM (not including the drive there and back). They have a program called ABLE there that helps people with certain types of disabilities. They are brain injury, cerebral palsy, multiple sclerosis, spinal cord injuries, stroke and other neurological diagnoses. The program of exactly what they do is described in the next paragraph in a quote taken from their website:

“If you are living with paralysis or a neurological condition, the ABLE: Activity-Based Locomotor Exercise Program, may help you. ABLE is based on the most up-to-date scientific and clinical evidence. It’s designed to speed up recovery after a spinal cord injury. The objective is to help your brain and spinal cord relearn motor patterns associated with standing and walking. The ultimate goal is to increase your mobility and improve your health.”

The Treadmill

In my assessment, the PT and OT first brought me into a room that had a treadmill in it. They told me that if I were going to do it, I would get up into a harness and onto the treadmill. Then they have people who would assist me in walking on it. I decided I would wait on getting up on the treadmill because my ventilator tubing (8 foot) wouldn’t reach from my chair to me standing on it. I knew this for sure because I had an assessment a couple of years ago and tried but it wouldn’t reach.

Then they brought to me into the assessment room and first asked me a bunch of questions. Most were on a scale and included questions about my history, feeling, movement, activity level and many more. Then they transferred me to a memory foam chair. First, they laid the chair back all the way, took my blood pressure three times in a row, and then sat the chair up fast and took my BP 10 times in a row. They wanted to see how my BP would hold up in an upright position. My BP went down slightly, but not enough to where it was concerning. This was important because since I have a spinal cord injury, my BP usually is on the low side, and I need to take medication for it.

After this, the OT took measurements of me and then tested my movement. She had a device that beeped when something pressed against it. It’s a way to measure movement based off if it made noise, how long the beep was and how hard the pressure was. Out of all the places they tested, I was able to make it beep once when I tried to pull my right arm back. After doing the program for a certain amount of time, they will revisit this test to see if I’ve improved on movement.

In order to check my balance, they transferred me to a table mat. I sat up on the edge of it to see if I could sit up without assistance. After being held for a few minutes, I was able to balance myself for about 15 seconds. I used to do this with my physical therapist on the edge of my bed. Also, they checked to see if I was able to use my ab muscles to pull myself forward and back muscles to pull myself back. I was able to fire my back muscles, but not the front.

Table Mat

The last thing they did before transferring me back to my wheelchair was had me stand up. There were 4 people that helped, one in back holding my backside, one in front holding my knees, and 2 on each side of me grabbing under my armpits. Simultaneously, up I went for about 10 seconds until my left knee buckled. It still hurts a little sometimes from when I injured it a few years ago standing in my wheelchair. Although I've been wearing a knee brace at night and that's been helping.

I believe in this program and have proof from a friend of mine that’s in it that it works. His injury is below mine and not on a vent but is paralyzed from the shoulders down. He’s been going there for over three years and has gained a lot more movement than he had before. He used to use a sip and puff to drive his wheelchair like me, but now he can move his arms enough to drive his chair with a joystick. He also said there were other people who have gained more movement since starting. These are just a couple examples of the benefits that the ABLE program has.

Overall, it was helpful to do the assessment to see where I’m at now and how far I can advance in the future. When I start, I will be getting on a regular schedule of twice a week, for 2 ½ hours at a time. If I were going to do the treadmill as well, I would be there for longer. The first session is for 6 weeks in a row and then they will assess me again. I can’t wait to see how much I progress over time. I’ll keep everyone updated as time passes!

Jenni

Thoughts About Health

Since I'm able to feel, I have pain in my neck, shoulders and back. I have lots of therapy throughout the week to help reduce and even try to eliminate it. Sometimes the pain is constant and hard to deal with and other times it's gone altogether. There is not much more I can do to get rid of it besides stretching and occasional pain meds like ibuprofen. One thing that tends to happen is that I can tell that I am in pain simply because of the way my body responds (I have muscle spasms) but I may not be able to feel it completely. Then I have to take a combination of meds for pain and spasms.

As far as my nursing staff goes, I understand that working for a C-1 C-2 quadriplegic paralyzed from the neck down isn't always easy. I try to give my nurses breaks whenever possible to allow them to rest their body. Some of my nurses have pain as well in different areas, either from old injuries or working for me. I've had my physical therapist, Nicole, come out and give the nurses training so that they have good body mechanics when moving me.

One of the biggest things is for someone to recognize when something is not feeling right with their body and making sure that they get it taken care of. Especially if it could get worse and cause more damage or pain in the future. I found this list of thoughts that people may think to themselves when they experience feelings about their health and they are ignoring it or don't think it's that bad. Take a look at it and see if there's a dangerous thought that you're thinking about your health that may just be worth taking a second look at.

The 10 Most Dangerous Thoughts About Your Health

Which one is yours?

 

1. Maybe it will go away.

Are you willing to risk that it won't?

2. It comes and goes.

Why wait until it is a constant problem?

3. It's not that bad!

Compared to what?

4. It only hurts when I…

If your tooth only hurts when you drink something cold, is the problem cold water or a cavity?

5. I know what my problem is…

What is your solution?

6. I was told I've got to live with it.

Don't give up on your body or your body will give up on you.

7. I don't want to know.

What you don't know can hurt you. What you do know can help you live a fuller life.

8. I don't have any symptoms.

Did you know that the first symptom in over 57% of heart disease is a heart attack?

9. I don't have time.

If your time is valuable, can you afford to ignore your bodies signals and risk being affected for weeks, months or even your lifetime?

10. I can't afford it… My insurance won't cover it.

You can't afford not to. What insurance covers your car payment, your rent/mortgage or your groceries? You find a way day after day, month after month to pay for these necessities… What about your greatest necessity, your health?

When any of my nurses tell me they're in pain and therefore aren't able to do things how I normally do them, I most likely will hear one of these 10 reasons why they haven't been able to address it. I can understand to an extent, but it also affects my body whenever I am being moved differently because of someone else's pain. Also, it can sometimes limit some of the stretches and position changes that I do. I think it's important for everyone to not just think everything is okay with their health because they have an excuse on why not to get it taken care of.

There have been multiple times over the past 10 years where my body has told me something is wrong and I listened by going to the ER or getting on some medication. There are also multiple times I could have (or almost) died had I ignored the signs my body was telling me. I'm grateful when I know something isn't right and that I make the right choice to do something about it, for my own health and benefit.

Jenni

Sitting in a Chair

I am a C-1 C-2 quad paralyzed from the neck down and I can sit in a chair without the support of someone else. This is a pretty amazing feat for someone in my situation. I was told by my physical therapist that not many people like me would be able to hold themselves up and have somebody take their hands away. I'm also able to sit up on the edge of my bed in a similar fashion without support.

I have physical therapy three days a week and manual therapy and massage therapy once a week. Therapy is one of the most important things in my life today. Some of the benefits I get from it are pain management, movement, relaxation of muscles, and building stamina. It's important for people to know that I wouldn't have the ability to do some of the things I do without it. Just being in my wheelchair for 8 to 10 hours a day would be difficult without managing the pain I have and building up stamina so that my body can tolerate it. Also through physical therapy, I've learned how to tighten and move muscles that I probably otherwise wouldn't have.

When I sit in a chair, my physical therapist first holds on to me for a little bit so I can get in the right position. Then when she lets go, it's up to me to use my abdominal and back muscles to keep myself sitting straight. If I start to lean a little one way, I have to tighten the muscles on the opposite side to bring myself straight again. That goes for forward, back, left and right. I work very hard during these sessions and it does wear me out afterwards, but it is definitely worth it. Although it may look easy from the pictures, the strength and energy it takes for me to do this can be compared to running a marathon.

I'm very proud of myself for accomplishing such great things. It would be easy for me (as it is for many) to just say "no thanks, I don't need therapy" but I know different and so does my body. I hope that others see how important physical therapy is and that it can bring about a better quality of life for people.

Jenni

Yay for Me

I'm finished! I know I've talked a lot about this class, but that's only because it was extremely difficult for me. I just submitted my final exam and am now officially done with it. I feel very relieved and excited to have finished because there were many times along the way where I felt like quitting and just dropping the class.

This morning I had physical therapy. She flipped me onto my stomach (in the prone position) and worked on relaxing my back muscles. I have a massage table that I bought so that I can go prone whenever I need to. My massage therapist flips me over too when he comes once a week. Before my accident I used to always sleep on my stomach, so it's my favorite position to be in.

Tomorrow I'm hopefully going to go to Target so I can pick up some well needed items. Then I'm going to enjoy my day and read for fun. That sounds good to me.

There will definitely be better posts to come now that I have some time.

Jenni

Update

On Monday I went to the doctors to get more Botox injections in my neck and shoulders. It's so nice to have my muscles loose again. The downside is that in three months I will have to go back because it will wear off. I also got my H1N1 flu shot.

Yesterday I had my interpersonal communication class and we had a quiz on chapter 8 which was all about listening. I got 15/15! I guess that proves something, I know how to listen. I have a six page fiction paper rough draft due on the 14th for my online creative writing class. I'm looking forward to writing it. I got great reviews from my teacher on my creative nonfiction paper that I turned in about a week and a half ago.

This afternoon I got in the standing frame with my physical therapist, Nicole. Usually the nurses and PCA's just get me in but lately I haven't been able to get up to 90° before my blood pressure drops. Nicole wanted to try to figure out why I could only get up to about 60°. I had a feeling this would happen, but I ended up getting up to 90° in about 20 minutes. Half the time it takes me to get to 60° when I do it without her. We figured out that it was probably due to the fact that I do the standing frame in the morning because that's the time I have a PCA. Today I did it in the afternoon. I had been sitting up in my wheelchair all day versus just getting up from lying in bed all night long. That's partly why my blood pressure had been dropping.

Jenni

Life As a Quad III: Physical Therapy

One thing that is very important for people with disabilities is physical therapy. Therapy can help in many ways and be very beneficial to someone who is unable to move on their own. Not only can physical therapy help with the body, it can also help relieve stress on one's mind.

I get physical therapy 3 to 4 times a week. My therapist comes to my house for a 45 minute visit each time. We do many activities and exercises during this therapy time to help my body. These help loosen my muscles, help me strengthen my ability to move, and help with pain management. I also gain more energy by working out in therapy which gives me the ability to do more things during the day.

My physical therapist has helped me with being able to tighten any muscle in my body in order to move certain things (i.e. my arms, legs, back, stomach etc.). The picture above is of me sitting on the edge of my bed. This is one of the activities that I have been doing to help strengthen my back and stomach muscles. When I first started sitting up by myself, I could only do it for about 30 seconds before I would start to lean forward and my therapist would have to hold me back up. That was a few years ago. Now, I am able to sit up on the edge of my bed for a lot longer. My record so far is 5 1/2 minutes. If I start to fall forward, I am able to tighten my back muscles and pull myself back up straight. Same with if I start to fall to the left or right. I am very proud of all the work that I have been able to do because of physical therapy.

The physical therapy that I receive is private pay. That means that I pay for every visit with the therapist. Unfortunately, insurance will not pay for physical therapy. With most cases insurance will only pay for a couple of months of therapy directly after the persons injury/accident. That's what happened to me. I was able to get two months (16 visits) of physical therapy paid for. I went to the Courage Center to complete my therapy. After that I was on my own to pay for therapy.

This is very difficult for the people who do not have the funds to pay for physical therapy. They spend the majority of their life with extremely tight muscles, making it difficult for them to be moved and transferred. They also experience great pain due to their tightness and end up taking pain pills to try to alleviate pain. I am very lucky to be able to pay for my physical therapy. However, this may not be the case forever.

I recommend physical therapy for anyone who has a disability and has trouble moving themselves, has tight muscles or needs help with strengthening.

Jenni

"To believe in yourself and follow your dreams, to have goals in life and a drive to succeed, to surround yourself with the things and the people that make you happy-this is success!"
-Sasha Azevedo

Life As a Quad II: Sensory and Motor

On Monday I went to an appointment at a clinic with a physical therapist. They did something called sensory testing. By doing this, they can tell how much sensation I have and where throughout my body. I have feeling everywhere but it is more predominant in some places than others. It is hard to explain what I feel and where, so this was just a way that they could measure how much sensation I really have. They only did my lower extremities this time. The physical therapist had me close my eyes and then he took a small poker (it kind of looked like a needle but it bent easily and was not sharp) and touched certain places of my legs. Each time, he asked me if I felt anything and where. There were a lot of inconsistencies with what I said to where he was touching. Most of the time I didn't say anything because I couldn't feel it. When he was doing the testing, I had a few frustrated looks on my face when I didn't get it right. I was feeling disappointed that I didn't have as much feeling as I wanted to.

After a while of using the poker, he started using his hands to touch certain places on my legs. I was able to feel where he was touching. That means that on my legs, I can only feel deep pressure. I kind of knew that but it was nice to actually have a test done. He told me that it is important not to get discouraged and the fact that I have any feeling at all is a good sign. My greatest sensation is on the top of my arms. Hopefully I will be able to do a return appointment at a later time to see if I have gained any more sensation. I have to tell you that it isn't typical for someone with my injury to have sensory or motor.

I am a C1C2 incomplete quadriplegic, with incomplete sensory and motor. I usually just tell people that I am paralyzed from the neck down even though I do have movement below my injury. The reason I tell people that I am paralyzed is because it is just easier that way. It is hard to explain how I move things and specifically how it is possible that I can move things. I basically have to know exactly which muscle or muscles move what. Then I have to pick out the muscles and tighten them to move certain parts. It was a difficult process in the beginning but now that I know all of the muscles and what they do, it is a little easier.

I am able to move all of my toes, five fingers , and my shoulders and I can bend both of my wrists, elbows and knees. I'm also able to tighten the muscles in my stomach and pull myself forward and tighten the muscles in my back to pull myself back. I have attached a video of myself bending my elbow. After my arm gets to 90°, gravity takes over. I'm not able to bring my arm back down.



I will try to post more videos of me moving. If you have any questions for me about this post or want to know something in more detail than what I have described feel free to comment below.

Jenni