Rehab: Recovery or Relapse?

Before I begin, I want to mention, today marks the one year anniversary of when I was admitted to the hospital just before they sent me over to the rehabilitation center at East Campus Loma Linda. 1 year ago I was loosing control of my body and even my mind. I was basically moving into a room in a rehab center. At that time I did not know if I would ever walk again...

Picking up from yesterday, I was now in a wheel chair being pushed around and starting to visit the gym where I was put through various physical rehab exercises most of which focused on my legs (since my spasticity was so bad) and my core (which helped keep me balanced and upright). At first I spent most the time in my wheel chair and sometimes I transferred to the padded “table” where I could lay back and practice different stretches with my therapists. Soon I got much better at transferring from my wheel chair to different pieces of equipment, the table, my bed, and of course the toilet. I still had to get clearance from my PT's and OT's that I was “safe” to transfer on my own which was my first step towards independence. It was nice to not need someone to help me into bed when I was tired or onto the toilette when I had to go to the restroom, that really damaged the pride, but getting that freedom after so much waiting felt really good! And I know this all happened in one paragraph but it probably took a few weeks of “training” to get to this point. It was like waiting for Christmas.

Standing; Now they wanted to work with getting me on my feet a bit, getting me standing. “Nose over toes” they said. This was the proper way to move from a sitting position to a standing position. Nose over toes. I remember them driving that into my head. Nose over toes, nose over toes. My standing was shaky at first, my legs were so weak, and so wobbly. I had no balance so after a few seconds of trying to stand (with a therapist behind me of course) I would start to tilt and slowly fall. After I got OK at standing up we worked on taking a couple of steps, then a few steps, it felt so good after not being able to move for weeks! I remember being so happy to take a few shaky steps with a walker and therapist holding on behind me. Just a few but steps nonetheless.

I was having really bad foot drop so they gave me an orthopedic foot brace that helped keep my foot tilted up so that my toes would mot drag on the floor when I tried to take a step. They also added a custom piece of smooth rubber to the bottom of my shoe so that if it did rub my foot into the floor it would simply slide and not cause me to trip. These two things helped a lot and I remember while I was waiting for them my therapists would tape a piece of plastic or paper to my shoe to help my foot slide, it worked but, it was tacky... They slowly started having me walk around the room in circles with the walker or I would walk a straight line within the parallel bars to work more on my gate and balance. This was all a slow process of practice, a little bit every day, not too much though, it was important (as noted) to practice energy conservation so I did not push myself into another relapse.

Since I was getting some of my strength and mobility back, getting around my room was starting to get a little easier. I could sort of push myself around in the wheelchair with one arm and a foot. I took off the foot rests so I could scoot around with my feet and use my stronger arm to push one wheel, the other arm was still pretty limp. This was a lot nicer than being stuck in one spot all day even though it was like rowing a boat with one paddle on one side, it made me want to just go in circles, so I had to use my feet to correct my path. I had some snacks on my little desk, some from home and some left over sides from all my hospital meals, mostly rolls and bananas. My OT's could now work on things like brushing my teeth at the sink instead of in a bowl, I even got to use the actual shower instead of getting a lovely sponge bath! Oh yeah, that reminds me, I found out the hard way that I was allergic to the soap they had there, that was not fun... Brushing my teeth, getting dressed, putting on deodorant, it was all starting to improve which made me feel great!

Now we move on to a foggy part of my memory, not such a good part... I think I remember they had been discussing a date of discharge with me, yay! Soon I would be out! I don't remember what led up to it but I started having a hard time breathing. What was I doing? I can't recall, I just know that all of a sudden I could not breath. I was dizzy and I don't remember hearing very well, just the sound of my shallow gasps for air. I remember laying back and them moving me into a room... I remember... Well... waking up in a hospital bed with oxygen tubes in my nose. My oxygen levels had dropped and I could not maintain my levels without the oxygen in my nose, I hated it because I felt like I still could not breath plus I had tubes in my nose! I wanted to pull them out but I could not do so for more then a few seconds at a time! After doing some more test it looked like I had a lung infection and a bladder infection which seems to be notorious for MS patients. According to my paperwork it looks like I spent about a week in the hospital where I slowly regained the ability to breath while loosing the ability to swallow.

 

Now they had to puree all my food (which was nasty, have you ever tried pureed cheese pizza?) and I had to take my pills with apple sauce since I could not do actual liquids without choking. I had a liquid thickener that helped for some things but it was horribly disgusting! I remember a therapist trying to spoon feed me water which caused me to choke over and over again because she was jamming it into the back of my throat! I was rapidly falling apart again... All that progress I had made was disappearing just like that. Now they wanted to insert a feeding tube because I was not getting enough nutrience, the thought of this mortified me, I could not handle that, no way! I was falling into a deep depression, once again I could barely move, breath, or swallow. Just when I thought I was getting better I was getting worse! I just wanted to die! I was going to be here for much, much, longer...

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