Beware, this is a long post. I’m really trying to finish up my story so I made my topic larger this time. It may have been a bad idea…
Below is another part of My AVM Story: the recounting of the discovery, removal, rehabilitation, and survival of an arteriovenus malformation. To read from the beginning of the story, click here.
Physical Therapy at Mary Free Bed
Physical therapy was by far my favorite therapy. At my first session, the therapist asked me what my goal was for this therapy session. Without hesitation, I answered,
“I want to run again.”
The therapist raised her eyebrows a bit. I don’t think many of her patients have that response. “Ok, then that’s our goal. Let’s run!”
First things first though. I had to walk. Like on the first day, I practiced with parallel bars a few times. I would walk between the bars with my right hand on the right bar supporting and balancing myself. My left arm was in a straight sling so it just hung at my side. The therapist would walk on my left side, the weaker side, and Dan would walk on my right. We would inch the length of the bars then turn around and return to the wheelchair.
The wheelchair was always with me when we walked. If we weren’t going in a small area, like the parallel bars, Dan would always push the wheelchair with me so that I could rest at any time. The therapists were very good about monitoring my level of fatigue.
Walk, sit and rest, walk, sit and rest, walk, sit and rest
I graduated from the parallel bars fairly quickly. My leg strength returned much sooner and easier than I expected. The therapist said that muscles that hold body weight, i.e. your legs, return to functioning more quickly than the arms/hands because they don’t support weight.
A part of getting back to running was building my leg muscles. All of my muscles had atrophy, the left side obviously more than the right. I had weakness everywhere that needed to be worked on.
Sometimes during therapy I’d just practice sitting down in a chair and getting back up. This worked on a functional activity that I needed to get better at, I currently I needed assistance standing up, and it worked on building my quad muscles. They were kind of like modified squats.
We walked everywhere in Mary Free Bed, St. Mary’s hospital, and the cancer center. We tried to encounter as many different types of flooring surfaces and obstacles as possible. One session we walked to a ramp that connected two parts of the hospital. We practiced walking up and down the ramp.
It was a strange feeling trying to account for the pull in gravity on my muscles. I notice now when I walk up or down an incline that is feels different than walking on flat ground, but then I felt unbelievably unstable. The feeling of being just about to fall was constant as I walked on the ramp. I wish I could go back and see myself walking down the ramp. Did I look as out of control as I felt?
Most of the time when I walked with a therapist, I was practicing walking independently. However, they are realistic that I might need accommodations if independent walking does not become a reality, so they taught me how to use a cane.
I kept the cane with me at all times so I could practice with Dan if I need to walk anywhere in the evenings. Just in case you were interested, the cane goes on the opposite side of the affected side. In my case, this would be my right side. The cane should “walk” with the affected leg, acting as a support for it. So step forward with right leg then left leg with cane in right hand, right, left/cane, right, left/cane. Got it? Now you are prepared. 🙂
Another challenging activity that would build muscles and work on a functional life activity is walking up and down stairs. Wow, I never knew stairs would be so challenging.
Stairs are tricky due to the fall risk of the patient. I always had to wear a thick belt around my waist that the therapist held on to until she/he was sure I was steady and able to do the activity on my own. Before we could attempt stairs, I needed to have a certain amount of stability and strength. MFB didn’t want me tumbling down the stairs!
I think by the time we attempted stairs, I was walking fairly steadily with a cane. I don’t think I was walking independently quiet yet.
My therapist spent quite a bit of time explaining how we were going to tackle going up my first half flight of stairs.
“You’re going to lead with the non-affect leg. It is stronger and more stable so we want that leg to do most of the work. This goes against most of your other instructions of “Affected Side First.” The reason is we don’t want you to fall. Stairs are tricky and require coordination and strength. Take all precautions until you are confident in your ability to get up and down the steps safely.”
Deep breath. Here we go!
The therapist (I wish I could remember her name! She and another therapist, Ann, alternated with me during the week. They were super. I loved them.) was on my left tightly holding to my belt, and Dan was directly behind to catch me if I fell backwards.
Step up with the right foot.
Bring the left to the same step.
Exhale. I did it! I made it up a step!
Working my way up the 8 or so steps, one at a time, like a toddler, was thrilling. We get to the top, and I know I’m smiling like a champion. I feel like I just conquered the greatest feat. I climbed eight steps in a row! I’m the queen of the world!
We stop and rest at the top of the landing. The therapist is thrilled. I’m thrilled. I’m sure Dan was too. Did I cry? (Dan?) I’m crying as I write this. I was so happy and proud. I can’t believe I can climb stairs.
I feel good so we decide to try going back down those eight stairs. Going down is hard than up because gravity wants to pull you down, and the leg muscles have to work harder to balance than going up.
The method is the same going down. Strong leg first. Ready?
Step down with the right foot.
Bring the left foot down to the same step.
One by one, we made it down the eight steps.
Yes! I did it! Whew, my first “flight” of stairs is behind me. I can do anything!
Steps were a key piece to me being released from MFB. Dan and I had a two story house at that time, and our bedroom was upstairs. I had to conquer stairs before I could go home. I was on my way!
Many therapy sessions were spent walking and going up and down stairs. I was always pushed to try to go farther, go quicker, more flights of stairs, and eventually the mother of all tests: walking up and down one stair per foot. This is far more difficult than you would imagine. You really have to trust that both legs can handle holding your entire body weight. It took me some time to trust them. 🙂
A few days before I was discharged, it was time. Time for me to try to jog.
I was so nervous when my therapist said we were going to try it. I still had trouble keeping my left foot facing forward when I walked. The toes would turn in towards my right foot, so I was a little nervous I would trip myself. Ha.
We went out to the atrium/main entrance which is a large square with a garden/outside area in the middle. It is tiled which is good for smoothness, but it will hurt if I fall. The only obstacle is the mats near the front door. I needed to be careful to not trip on those.
The therapist says I can just go at my own pace, just try to jog like I remember how to.
Here we go!
I start walking to get in the rhythm of moving. We speed up then I step into a slow jog…
A few steps into it, I realize: I’m doing it! I’m jogging!
The fantastic thing is my left arm naturally bent up and swung as it should, just like my right arm. This was huge. (I’ll go into detail about my arm in another post, but it is far from working properly, even this close to my discharge.)
I made it over the rugs, no problem. I think it did weave and waver a little bit, but Dan and my therapist corrected me quickly so I didn’t fall.
Just like the stairs, this was elating. I ran. Did I really run? Yes, I ran. I RAN!
It didn’t matter how slow it was. I was beginning to feel normal. Hope that I would be able to work-out again and participate in races was returning!
The last day or two on my hospitalization at Mary Free Bed I was walking independently without a cane. I walked to all of my therapies by myself. We took my wheelchair with me as basically a purse. It held all of my stuff, and it was there just in case I needed a rest.
I think the last full day of therapies, my occupational therapist came up to Dan and I as we were waiting in line for therapy to start. He smiled as he walked up. He said, “I don’t think you need that anymore.” He took that wheelchair away.
I wasn’t sure I was ready to give up my crutch. I knew I always had the wheelchair to fall back on if I needed it. Since someone else had the confidence that I didn’t need it was all the encouragement I needed.
I was free. Free from the wheelchair. I was free to walk on my own again.
This is what Mary Free Bed is all about: restoring freedom to their patient’s lives. I experienced joy and a feeling of great freedom as that wheelchair was rolled away. I was well on my way to recovery.
Next: My AVM Story – Part 38