Kung Fu Fighting

I have been rocking it in therapy lately and have a lot of new accomplishments to share. I figured I would do this in a list form rather than writing out a sentence for each one.
* I can walk sideways while holding on to a bar
* I can walk backwards while holding on to a bar
* I can walk up and down a set of five stairs of different heights
* I can walk stepping over cones (with right leg on one lap, left leg on the other)
* I can then pick up the cones from the ground
* I can eat (very messily) with my right hand with adapted utensils
* I can write (messily) with my right hand with a fat pen
* I can dress myself and pull up my own pants (Hey that is harder than it seems!)
* I am now allowed to transfer in and out of bed and to go to the bathroom independently
* I can manipulate objects like dice and clothes pins
* I can catch a ball

Now for the areas where I still need work.
* I need to work on feeding myself and writing
* I need to work on balance
* I need to strengthen my right leg when bending as it reaches a point and then gives out
* I need to build endurance and strength in all areas
* I need to work on general household tasks
* I need to walk longer distances with a normal gait pattern without cuing
* I need to work on my toes not turning inward when I walk

The BEST news is that I get to go home next Friday (February 26)!!!! I will receive therapy at home and continue to improve but I get to bust out of here in 8 days (not that I am counting)!!

Reflections One

I have not written an update in quite a while about how therapy is going. It is a hard three hour work out each day and I end up exhausted by the end of it. I push myself to do more, stronger, harder sometimes to my own detriment. I just want to get back to normal as soon as possible The rehabilitation doctor was in today and said I had a few more weeks to stay here. One day at a time.
Below are some things I have been doing in physical therapy.
* Kicking a ball (not soccer star, more like uncoordinated toddler)
* Opening my hand enough to pick up soft squishy beanbags
* Leg exercises (extending legs, marching in place while seated, rotating feet as much as possible, etc.) with a pound weight on each leg (the weight seems to help me be more aware of my leg and move it easier))
* Working on balance by sitting on the edge of the table/mat and reaching forward to place objects on pegs or to roll a ball
* Shifting weight into my left leg
* Raising my left foot high enough, and properly, to place it on a step
* Getting myself dressed and taking care of daily needs
* Practicing standing balance by standing with support and a walker and shifting weight from side to side or front to back
* Riding the exercise bike thing from Hell (not recently as my lungs have been bothering me)
* Working on swallowing different textured foods
* "Walking" with a walker and support about 30 feet (my left leg drags and does not pick up to step yet)

Sometimes I do not see the successes but looking back over it I have come a long way in two weeks. When I arrived I could not move my left side at all really. So there has been progress, hard progress, frustrating progress, slow progress, but progress.

I still have my migraine but now finally have pain medicine for it. So hopefully it will at least be controlled if not broken. I also started on breathing treatments 4 times a day because the Mitochondrial disease is making it harder to breathe.. It feels like the muscles in my diaphragm are week and difficult to work, making each breath an effort. My lungs also get tight. My pulse ox stays high enough to be safe, but it is exhausting and painful. The nurses and physicians assistants would not listen to me or understand, but the doctor knew what I was saying and was willing to do something about it. I am still waiting for something for sleep. He does not feel comfortable adjusting or adding medicine because I am on a lot of "psychiatric" medications (One is used for my muscles from the dystonia, the other is supposed to help me sleep) and he wants the psychiatrist to decide what to do.

I am getting used to having a roommate after over a week of a room to myself. She is a sweet older lady, but there are some issues. She must be hard of hearing because her TV is always set to jet engine loud. She is also incontinent and struggling with diarrhea which makes for late night visits from aids to clean her up, and oh the smells. But she is kind, and she provided me with information on a way for my Mom to be able to visit me here (the city buses do not go this far and neither one of us can drive). I am hoping to see Mom on Christmas Eve.

First Steps

Today at therapy I had the honor of witnessing a woman take her first steps with a walker since her disability/illness. She was so very scared and anxious. But she overcame that and walked!! It was not far, but distance was not the point. When she sat down she was in overwhelming happy tears, and I almost joined her. Sometimes the biggest things are the little things, the act of beginning, the start of the journey. That pride in her heart and on her face, along with amazement, was priceless.
I had my own small victory at therapy today. I "walked" 8-10 feet (last time was about 4-5) and was actually able to lift most of my left foot off of the ground. It was hard, so hard, but so worth it to feel and see myself moving. It takes so much work but I have improved in just a week. It is all a journey, a process of learning and discovery, a series of lessons and struggles and victories. It is about how you see the world and the perspective that you seek.

And on the Seventh Day...

Today is a rest day from therapy, a day without pushing my body to and beyond its bounds. While I want to get better as fast as possible, I also know my body needs this rest. We may need to adjust therapy as once I am finished my energy for the day is gone and I sleep. This is probably because of the Mitochondrial Disease. The Mitochondria are in every single cell in the body and are what produces energy for the cell. Mine are damaged and so do not produce energy properly. So I can only do so much before my reserve for the day is gone. I am sure spending 3 hours doing therapy and then the remainder in bed is not going to help me as much as if I was awake and capable of doing more.
I like that in the process of the Creation, God himself took a day of rest. He had completed an enormous, unfathomable task and then rested. He took the time of peace and calm and rejuvenation. It makes me feel less of a disappointment to need that day of rest. And today I will be thanking the Lord for the many blessings in my life, relaxing in His loving arms, and drawing near to Him.

The Journey of a Thousand Steps

Friday: I have been feeling badly in PT/OT because I am basically the only patient with two therapists working with them at once. It was frustrating, because the other patients were so much further along as I worked to convince my arm to lift more than an inch, or my foot to raise off the ground even an inch. Yesterday was an amazing day. It still took two therapists, but I "walked" between 5 and 10 feet. Okay, so walked is an overstatement. Two therapists supported me upright, I held on to a walker, and my left foot just barely slid on the ground. But I moved!! I was upright and moving and I was able to attempt to tell my body what to do. Huge victory!! I want to be walking but it is all about baby steps and patience. I am not a patient person in most situations, so this is a huge lesson for me. I cannot expect to suddenly be back to my normal. I have to give it time, and way harder work than I ever imagined possible, but I am stubborn. And the journey of a thousand steps begins with just one.

Saturday: I have a new nemesis. It looks harmless until you try to get your non cooperative left side to join in the fun. I primarily use it with my right side while my left leg goes along for the ride. My left hand cannot grasp the handle independently so it just chills out.

I was so proud of myself for lasting 15 minutes with only a 1 minute break and making it .11 of a mile. Then an elderly man on oxygen came in, did 20 minutes, and surpassed my great achievement in under 3 minutes. Ugh!

Today was a good day in therapy though. With minor assistance I was able to extend my leg nearly straight out. I kicked a ball with my bad leg - not soccer player style, more like uncoordinated toddler in a chair style but I kicked the slow moving thing! As I was doing leg exercises and doing my best to lift the stubborn leg, the therapist told me to look at how high another patient was getting her legs doing the same exercise. I simply replied "Showoff!" The big thing today was I was able to pull my foot about 3-4 inches off of the ground to put it on a low step and put a little weight into it. I did that five times (with support but the movement was mine!). !! I needed a good day as I was getting so discouraged. The therapist today said he can really see changes since I came in on Monday and that I am making great progress. I guess from my perspective I want to get back to my life so badly that I lose sight of the small victories. I need to take the time to appreciate and celebrate those small victories!

Boot Camp

Today was my first day of therapy. And all I can say is that they kicked my A$$! I was there for three hours of hard work. It is amazing how hard it is to make such small movements right now. I did get to stand up with assistance and work on putting some weight on my bad leg. We are also looking at getting me a new set of AFOs (ankle foot orthotics) to help stabilize my legs. I also now have a splint for my left hand to keep it from curling up so tightly. I am to wear it as much as possible during the day and all night. Let me tell you that typing one handed is exhausting and time consuming. So if some of these posts are short that is why. My therapists are incredible and totally rock. They push me but not to the point of significant pain or exhaustion.
What impressed me today was watching the elderly patients (I am the youngest here by probably 30+ years) who are working so hard to gain or maintain skills. No one complained the entire time that I was there. One man whom I believe had a brain injury at some point and now lives here (He is in the residential unit) actually refused to leave until he completed a specific exercise. Everyone was at their own ability level and working on their own needs, but we all respected each other's battles.
After therapy I decided to be brave and join in one of the scheduled activities. I was with a small group of old women and they were so nice to me. We made Christmas cards and craft gingerbread people. Several of them could not write, and it was so nice to be able to help even one handed. It was an activity like I would have done with my preschoolers but still fun and a nice change of scenery. But sitting up for even longer wore me out. By the end I was slumped to the side and raced at the rate of a sick snail back to my room.
I also ate in the dining hall today for two meals. Old people get stuck in their ways and do not seem to like change. I tried to roll up to a table with three sweet looking old women and was told that the spot was taken - by someone not there- and I needed to move. I will get to the cafeteria early when I choose to eat there (I can also eat in my room) so I can start at an empty table and let them choose whether to sit with me or not. The ladies at the activity were much nicer.
My migraine still has not gone away. It is tolerable during the day but gets much worse at night and in the early mornings. I have no pain medicine for it, as the theory (and I call it a theory) is that pain medicine can actually cause it to rebound worse. I for one am willing to take that chance. It has to end soon...right?