Thursday, March 6, 2014

Neuro Inpatient Rehabilitation Unit

I have several different "detailed" posts in mind for the near future!  I have focused so much on recovery the last year, giving recovering from this surgery the main subject of this blog. I want to touch a few things before I move on to what my life is more about now, the new me. My new normal.  Before I do so, I want to go back again, as I did a few post back when I explained in detailed how it felt for the first 4-5 days upon waking up from this surgery. This time, I want to talk about the wonderful world of Acute Inpatient Neurological Rehabilitation! WOohoO!

Again, same as I said when I wrote about my surgery, this is my personal experience.  This is how it went for me.

I was ready. I was SO ready to have the surgery done, wake up, and work my way up :) It all made sense to me. After my initial few days in ICU, then to a regular room, I was transferred to St.Joseph Hospital Neuro Rehab Unit on March 5th, 4 days after surgery :)

This is a picture of "me". Hahaha I just got to Rehab.  The rehabilitation Unit  is connected to St.Joseph Hospital, where The Barrow Neurological Institute is.  The hospital all together is huge! It has the Barrow Neurological Institute, St.Joseph's Hospital, St.Joseph's Children's hospital and connect with a skyway to the Neuro Rehabilitation Unit.   I was transferred there by wheelchair. It was quite the ride because it was at least 20 mins and I was so incredible dizzy and weak still haha But I laughed about it. Everything was funny, you know!!

So these are my feet.  I like that picture. To me, its not just a picture of my feet.  This is a picture of feet I did not feel, and could not move. Such an incredible feeling!  I like to look back at that picture, and compare with this one, the day I got discharged from the rehab.


You see those feet, at the bottom left?? Those are mine. Crossed :) That's a walker I am able to use, on my own.   That's 15 days later.  15 days from not being to feel my legs and walk, to being able to cross them AND use a walker.   Let me admire the picture a wee bit longer, as my husband was packing our stuff to leave. Yes. My husband. Packing.  Hot isnt it?  haha There is something real hot about a man doing things I normally do.  I think so anyway. haha
Oh guess what? I was discharged from Rehab on March 15th.  Jay became sober 21 years ago on a March 15th, so guess what? Now we can both say that March 15th is the day we both got out of Rehab. hahahaa Isnt that awesome?

I knew before the surgery that I could be away from home a long time. I was told to I could be in Inpatient Rehab for 2 months.  So when I started, I really didnt have any set goals. I was just going to work my hardest, every day, until I could be discharged from Inpatient, to go finish Outpatient  in Cincinnati!  I was told that most people who cannot feel their legs or walk after surgery, take a few months to walk again. Me walking again was the main focus the first 3-4 days of therapy. I had a lot of Physical Therapy (PT)  I also had Occupational Therapy (OT) and Speech Therapy (ST) and ADL (Activities of Daily Living) All those therapies involved different things, and I will do my best to be as detailed as possible, without boring you!

I have heard before of someone having to learn to walk again. It sounds so intense, such a major task, so incredible!!   Here is how it works. Ready?

I was never paralyzed. I was totally numb, and had absolutely zero strength, so basically, they were "dead", not paralyzed.  That means that my legs were "physically" capable of doing what they are meant to do, but I my brain needed to be "re-wired" to make them believe that. There are  2 main things that the therapist focuses on IF you are not clinically paralyzed but cannot walk because of Neurological damage. 

1)Teach you that even tho you cannot feel the floor with your feet/legs, they are indeed touching the floor.  Work your MIND.

2)When you have convinced your mind that your feet are indeed touching the floor, IF your legs are not physically strong enough, lets build them some muscles.  Work your BODY. 

Here is how walking again all start. First, you have to Stand. On those legs you dont know are there. 
Ok. First.... Look at this picture. Look at it! Now Laugh. Please for my sake LAUGH!!! 


This is a picture of me, the first time I stood up. It was actually right before I was transferred to Rehab. Let me first redeem myself.  I do not like that picture. I never did. I despise it. hahaha Jay took that picture because he was so proud. Such a proud papa, i mean hubby.      First, the first thing I see, is what looks like a oversized blow up doll.  Chest up, and butt out.  Guess what.. These are the exact instruction i was given!  
Remember, these legs that are touching the floor, I dont feel them. I feel like my torso is floating. haha At first, I was trying to use the little strength I had in my arms to lift myself up, because i thought I would fall.  I didnt have legs ya know!! Then the Therapist gave me those instruction: 

Here are the instructions I was given. 
1)Close your eyes for now
2)We will not let you fall. Use your hands to hold the bars, but do not hang on them
3)Push  that very very tinny chest  of yours forward. I "think" I got that part right.
4) Put your back as straight as you can, making that very very tiny butt of yours stick out. 
5)Focus on maintaining that posture. Visualise your feet touching the floor (I am  focusing, can you tell?) 
A picture of my wheelchair, so close,
yet I couldnt get into it without help. 
6)Visualise your feet going one in front of the other, and do it

I actually did. I dont remember how many steps I took, but I can tell you how super natural that felt. haha Yes, folks, You can actually walk, without feeling your legs. The Mind  is amazingly powerful.  That's the brain! The brain is powerful!! This step is was actually more to teach you that you can stand up. The walking part with the frame helps a lot, but you know you can do much if you are relying on that frame to help you stand up. The next step is standing up on your own. Now that is a challenge, let alone walking.

In rehab, learning how to walk is important, but its not something we did for hours every day.  I was assigned a wheelchair, and my first goal was to be able to move myself from my bed, to the wheelchair.  I cant tell you how precious that goal is. It feels like pure independence!!   I couldn't wait to be able to get myself in that chair and just go for a stroll!  

First first few session of PT were all about getting those legs to KNOW they could work.  In the big therapy room, I had to sit in a chair, and watch my foot as my therapist pressed it on the ground.  It was like magic. haha  The therapist NEVER asked me to walk on my own, without any support.  She wouldn't let me try. haha The mind is strong, but not THAT strong.  It is only weeks later that I walked without a device to support me.  The first time I took a few steps without that frame, was using those bars here. This is Rachel, my awesome therapist!! I don't have picture of me doing therapy. I really wish i did. I was always alone in therapy so its not like I could take pictures of myself. haha But these are the same bars :) (thanks google)

Aww Rachel!! She was so amazing and sweet! We laughed so hard together!!  That white belt that this guy is wearing, is always going to be on you unless you are sleeping!! You HAVE to have it on.  It is for pretty much everyone around you to hold on to as you stand, move around etc.  It is very helpful.  It was quite a high to be able to stand on my own, and walk across that path, with Rachel infront of me, just like that.  It does NOT matter how good you are doing, or how far you have come, she will NEVER let go of that belt :)

After you mastered the walking, even before you truly feel your legs, the magic happens. The more you do it, the more your brain tells your legs "Hey look, we actually work", and a little bit every day, you feel more control over your legs. They became less and less numb. Still too numb to just start walking like everything is fine, and you walk like a granny, but you walk!  Oh yes, you need the walker.  I was able to walk with a cane 2-3 days before I was discharged.

The goal of your rehab stay is NOT to fully regain all your functions before you go home... because you could be there for months!! Its about getting you to a level where they know you are strong enough to live at home, that you are not going to kill yourself the moment you get back home.  

 It is VERY personalised!  I HAD to learn to go up and down some steps, simply because my house is a two story home and there are 12 steps to go upstairs to my bedroom.  If i was in  ranch style home, it would not of been necessary for me to prove I could do this before going home.   I also had to practice going just one step and stand on it the same amount of time it would take to open a front door and get my walker in, simply because that's how my house is!  I was amazed at how well they prepare you to go home! So Inpatient is basically where you have to live, and get stronger, and get some skills, in order to be able to go back home.

For OT, It was also very personalised. Because i am a mom and do most the cooking, I had to cook. That's right. I had to cook :)   Let me tell you, this was SO difficult. It looks easy there... I am making a Spanish Rice SideKick. haha Standing there with my walker, by the stove, and having to use one hand to stir the rice, and only one to keep my balance, was crazy.  I was at the stage where I could walk veryyyy slowly using my walker, so I felt blessed, but just standing there for 10 mins got me a massive headache, slurred speech and I got emotional.  I actually went back to my room (jay had to push me back on a wheelchair) and cried for the first time since surgery.   Not only that, but all that hard work, and I couldnt taste the food.  My taste was gone for about 2-3 weeks after the surgery.   I think I was mostly exhausted from that cooking. But letting myself go and cry felt good.  

It's all about getting stronger, so once my legs could walk, I got to workout to make them stronger :)  I did a lot of sitting bike. It felt great to move those legs.  I got to do some floor exercise, stretching and all that good stuff.

I had a lot of Vision Therapy. I am so horrible, I forgot what that was called.  I had very bad double vision, quadruple, tunnel, you name it. The Therapist hated the eyepatch.  They want your brain to adjust by fooling it, not make it believe that everything is good by making it all better with an eyepatch. However, my vision was so bad, that it made me not be able to do anything without the eye patch. I needed it to function, period. So they gave me some special goggles(pictured) Two pair, with each just one side covered in see thru tape. Just enough to help. I didnt like that, but i am a good girl, so I only used the patch on my "ME" time. By that time, I truly needed it to relieve my headaches from all that therapy hard work. haha 

For Occupational  and ADL (activities of daily living) therapy, I had to work hard at proving I could take care of myself. Shower, get dressed.  Before being discharged, I had to show them I could go in and out of a bathtub without falling. I was able to be fully clothed for that. For the shower, I had to shower , a real one yes, and shave, and wash my hair.   However by that point, I dont care anymore.   I had to do a lot of therapy like making beads necklace, and other fine motor skills exercise, for my right hand.   For my memory , focusing, processing, I did a lot of work in Speech therapy for that. It is in speech therapy that you work on all of that, because it works those parts of the brain that create speech. It all works together.   I had to listen to a list of words, and tell her what the list was. I had to name as many words starting by a certain letter etc etc. SO many things that are quite logic. I played games of memory and logic on an Ipad!

Because in intense therapy for 2 weeks showed me that all I had to do once home, was to just find the things that were difficult for me, and exercise them! And that is what I did.  Its hard for me to count, so once a week, I volunteer at school and have to count how many words per minute the child reads. I am there an hour and see about 5 or 6 kids.  Its challenging for me, even a year later. It makes me practice a lot of these things I struggle with: Focusing, counting, processing information, brain multitasking, even writing!    I learned that these things that are hard are just one more reason why I should do them!   Especially the mentally challenging things.  Motor skills too.  My hand can only write so long. I would say 3 sentences, or 20 words. After that, forget it, I cant. BUT I still want to do it.  I can write grocery lists and fill out simple forms. I could easily not want to bother. 

Therapy is so not complicated when you think about it.  Its to exercise your weaknesses. Just like a weak body get stronger by building muscles, so does your mind by exercising it.   

In the Rehabilitation Center, all your therapy are divided into a schedule.  That schedule is purposely in the hall so you manage to get out there and look at it.   I had PT at least twice a day. OT usually just once.  At first, I had PT 3 times a day, and Speech twice. The schedule adjusts according to where you are at in your progresses.   The sessions varied from 30 mins to 1 hour.   Let me tell you, having about 3 therapy sessions in a row was a killer. Your brain just needs to rest. The first day of Therapy, I probably did 15 mins of PT, and I was a mess.  My stamina was so low. But it gets better!! The therapist always would ask every 10 mins or so "Do you need a rest?" and I only said Yes once. I always wanted to finish, push myself.  The brain is so weak right after surgery, that just to "think" is draining you out. haha  The stamina and mental strength builds up a bit more every day.  After 2 weeks of rehab, 3 weeks after surgery, I could be "thinking", doing something (Tv, computer, talking, focusing on whatever) for about 2 hours, then i really had to just rest from everything.  As time go, it goes up to 3 hours, than 4 etc. and before you know it, you are good to function the entire day again. By function,I mean not needing to go lay down, i dont mean cleaning the house. haha   I actually slept 12 hours a night in Rehab.  I truly needed it. I didnt need to nap in the day because I had such nice long nights.  I just needed to rest during the day... relax :) 

Rehabilitation is always going to be the most rewarding thing I have ever done.  Its amazing to go from not being able to move, to showing to yourself and others that you are going to be ok and you will get there. You will get to being the mom and wife you want to be.  It was not only rewarding, but the therapist at Barrow were all so human, so sincere, kind.  Nothing was ever too serious. They truly get to appreciate who you are, work with you, push you, and even force you to stop. haha  Barrow Neuro Rehabilitation Unit is literally the best time of my life, despite the limitations I had.  Being there with Jay was a true blessing too.  He was able to stay with me and sleep on a guest bed next to mine.  We missed our kids, but the focus was so much on me being able to go home, that it all went hand in hand.

Now, all I have to do to, is to wear that shirt :)  


  1. Thank you for sharing this. Every time I read one of your posts it puts me at ease because I feel more prepared if I ever were to have surgery. Plus I LOVE your attitude!

  2. Your blog is really useful for many people I think. Because many times I have found the useful information which was really important for me. Reading this your post was good.

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  3. Thanks you for your comment about physiotherapy and learning to walk again. It is very interesting that the Physiotherapists got you to work your mind. I believe it was the same for swallowing as he could not swallow for 2 months but totally regained that. My son had a meduallry hemorrhage from an AVM and could not walk after. He said his legs just felt so rubbery so he could not hold his weight. Nine months later he is walking really well. He is doing most of what he used to do. It is amazing. Thanks for your big heart to share.

    1. I am so sorry I just reply to you now! I thought I did but i guess something didnt go thru. I am so glad that your son is doing good. It is amazing what the body can do when we work as hard as we can to regain these things!! Who did your son surgery? I am really glad he is doing well. My legs still dont feel like it was, but i am use to it now!

  4. thank you for the articles. I underwent the same procedure in May and would love to compare notes. If you would like, reach me at



    ps i have a hard time speaking from the surgery.

  5. Thank you for sharing such wonderful information! Keep a healthy life by consuming healthy food and doing exercise regularly is the best healthy formula.