Two Sisters Together - A guest post by Marty Matocha

Having Annie in Bethesda for the last 2 ½ weeks was an unforgettable experience! When I first learned she was coming, I was absolutely thrilled but wondered how it would turn out – would she adapt to the clinical trial routine, manage the hotel stay, come to my house and like my cooking and wine choices?  How would she stay busy in-between the coming and goings to NIH? All unknowns.  In hindsight these were needless worries as she managed the full spectrum of activities thrown her way.  Perhaps the first of these was the long walks down the hallways leading to the MEG. Then there was need for her to patiently perform a repetitive task with her left hand while it was connected to an orthosis.  A benefit of the latter is that it allowed Annie a chance to focus for about 20 minutes, 4-5 times per session, on a specific task without the distractions of daily life.  Perhaps an analogy to this is meditation, but how many people take the time to do this every day? Another benefit was meeting the NIH staff involved in the trial – they are smart and friendly and truly dedicated to a better understanding of the brain and its ability to recover from a stroke injury.

Of course, there were also some fun activities.  Annie introduced me to several restaurants in Bethesda I had never tried. We experienced stand-up comedy (aka “Laugh Riot at the Hyatt”). We saw “Midnight in Paris.” We visited Penzey’s in Rockville and Balducci’s and Madeline in Bethesda. After Bob arrived we toured the Steven F. Udvar-Hazy Center near Washington Dulles Airport and received his expert commentary on the flying machines in the huge hanger. As for me, I learned the meaning of “bodega” and the reason a hotel has a courtesy car. My husband and son enjoyed her company too and, for all of us, her visit added something different and interesting to our lives.

Last Wednesday, we said our goodbyes and each agreed it would be good to get back to our normal routines.  But it was rewarding to me to spend time together and see her independence expand and hopefully, she left with the motivation to practice “Offene linke Hand” over and over and over again.

Home sweet home

A couple days ago, when I read about Gabby Giffords leaving TIRR to go home my very first thought was, that is the only way she will get better because this is exactly what happened to me. I was at TIRR for 7 months and although I had 6 -8 hours of rehab every day, it is still a hospital. I remember hearing that you can become "institutionalized."  I didn’t exactly know what that meant at the time, but I do now.

The doctor asked Bob:  "Are you sure you are ready for Annie to come home?" We naively said, unequivocally, “Absolutely”.

In hindsight, I was in no position to know if I was ready or not to go home. I was told it was time. All I knew was I thought I wanted to go home. Bob seemed excited to get me home. He was living at a friend’s home for 7 months and came to see me every day. I didn’t truly understand my limitations until after we arrived and the severity of what we were going to have to overcome. I knew I couldn’t walk, shower, get to bed on my own, get to the bathroom, or prepare any meals. I had difficulty eating due to my medication, e.g. I regurgitated my food at the end of every meal. And my dignity, well I checked that at the door of the hospital and forgot it. It took years before I could reach for it again.

We were completely unprepared for Bob having to take over 100% of what the nurses performed in addition to the physical therapy and I was 100% wheelchair dependent.  I was in the therapy vernacular, maximum assist. We were prisoners in our own home. Couldn’t go out for fear I’d have an accident – bathroom variety – and I did a couple times. I’d fall out of my wheelchair. I was in pain – for reasons we’ve never understood.

Bob had to spend 20 minutes every morning and evening straightening my leg so I cold sleep comfortably.  I was wearing diapers at the time.  It was the only way we knew how to both try and get some sleep. The process of lifting me out of bed to toilet, etc. was too time consuming so we eventually graduated to bedpans after about 6 months. I was 100% dead weight and about put Bob in traction with all the lifting and transferring he did. Thank goodness he is so strong.  When he wasn’t feeding me, changing me, transferring me he was trying to teach me how to walk again.  You might ask at this point:  When did Bob have time for himself? What did he for a release?  Why didn’t he jump off a building?  I truly don’t know how I would have handled this had the situation been reversed.  

Eventually we found physical therapists, caregivers and of course leaned on family. Going home was tough, but it was time and it taught us a lot. 

During a quiet moment

mel·an·chol·y/ˈmelənˌkälē/

Adjective: Sad, gloomy, or depressed.

Noun: A deep, pensive, and long-lasting sadness

Melancholy…

When I used to travel a lot for work I found 2 weeks or more on the road to affect my productivity. Maybe it is the same here at NIH. Home is where I drift to between sessions. What’s going on, what am I missing, what’s everybody up to without me? Probably not much other than a few dinners out and some drop-bys to see what’s coming out of the metal shop. Still I wonder.

Melancholy may be too strong of a word. A little bit lonely? I miss my friends and family – aka my Bobby. My home routine which seemed a little boring at the time looks pretty good to me. But of course, “the grass is always greener”. Maybe I have gotten so used to having my exercise gear, my computer, my co-pilots and most important my kitchen near by to fill the gaps in the day. Seems like I am always doing something. Maybe I should revel in this time. After all, it is for a good cause and I will know I was part of something important.

The stroke has shortened my “piece of string”. That’s what Bob calls it when someone tightens the radius of their life. It’s like pinning a string piece at the home base and moving it in a circle – that’s ones range. Before the stroke the string I had few limits but now it is pretty short. It’s not so much a negative it is just that the stroke makes everything much more difficult. More time consuming.

I try not to dwell in this space. There is nothing to be done about it but to continue to try harder to get past my limitations. So maybe melancholy is okay for a little while. Remember the mantra “Revel in what we can do”. 

On the road

Manic Monday

Before I get to “Manic Monday” let me give you a picture of my NIH day in the capable hands of Katharina, Mathias, Simon and Siria all PH.D candidates or doctors in training. The day consists of 2, one and a half hour sessions where I am tightly locked in a soundproof, electronic signal proof room with a unit on my head and my left hand strapped in an electrode glove. There is a picture at the bottom.

Each session requires all my concentration in order to will my left hand to move. I think the hardest part is when they say “shut your mind down” and I have not figured that out yet. But mostly it is thinking my hand to move – and it does. It is magical and I’m still not convinced they don’t just shock my hand, but they say not, and it is a wonder to behold. My hand moves.

But back to Manic Monday. It was a rocky start at best. I missed my first appointment on Monday due to a minor miscommunication where I was sitting at the spot they sent me, but they didn’t find me. I was mortified because as they say “you can only make one first impression”. But it turned out okay because the first session was rescheduled for the next morning which turned out to be a non event – as they discovered my left hand did not respond – surprise – from anything I could do. But worse, I went back to the hotel in the meantime and wrote the day’s blog, saved it and it vanished. Turns out the hotel computer automatically clears the last user. Lesson learned.

The day could have ended badly as I was kind of bummed. I thought a glass of wine might help but there was no hotel restaurant or bar. Nice place minimal services. So I called Bobby and started to complain. He said, “Hold it, go down to the front desk and talk to the manager. I bet they have a courtesy car that will run you over to the local bodega. Get a bottle and parse it out over the next couple days.” He wanted me to stay sharp. So I did just that. Louis took me to the store, walked me in, brought me back and as I was walking in I met Chris who was sitting outside. He mentioned the bottle of wine and my adventure. We shared a glass and it turned into a nice evening. Moral of the story, if you’re having a bad day call Bobby.

I love spending time with my sister and my nephew Nick. He surprised me this morning by picking me up to run me over to NIH. I got to skip public transportation and got a hug.

On the Road

I told Bob the other day I thought I was firing on all cylinders--mentally strong and physically stronger. I don’t want my physical challenges to impede my mental abilities. I feel very strongly about that.  Let me explain:

Yesterday on my way to DC for my stay at the NIH I took a United Express flight. Mentally I felt so sharp but the physical act of getting on the plane and deplaning were daunting. Then there was the steel box. That’s what my brother in law Doug calls the airplane restrooms. But I had to go. I told the woman next to me if I don’t show up in an hour send a search party. I do love the kindness of Americans – she said let me join you for the trip back there. I declined. I was in seat 15A. I had fifteen rows to get to the bathroom. The aisle was so tight that my left foot hit every seat and I had to grab every headrest. You know how that bugs you when someone does that. Then I had to back into the restroom, how awful.

Tracy (my therapist in KC) would have been very displeased with my left foot sticking out and catching. Seems more work is in order.

On the return trip to my seat, it was worse. My left foot stuck everywhere including a protruding backpack. It took thirty minutes and I hit my head twice! No more regional jets!

Just as I was regaining my composure this happened: The flight attendant asked me if when we arrived I could walk down the  stairs. These weren’t stairs; they were a cliff with indentations. I said, “no way”.

And then there was Manic Monday at the NIH…

clinical trial participant

The National Institutes of Health is in need of a Lab Rat…

So I am off to DC on Sunday for two weeks of clinical trials. Last February I was selected for a study using magnetoencephalography (MEG) to see if brainwaves could move my left hand. They needed stroke survivors with complete paresis on one side. Who better than me? They put a helmet full of electrodes on my head that captured brainwaves. The brainwaves were then analyzed and sent to electrodes on my left hand. By thinking “move left hand” I was able to see my hand move. The study is obviously around devices to either replace or support the use of limbs the brain is no longer connected to. It was a fascinating week the first time. They didn’t invite me back due to concern about the titanium holding my scalp in place blocking the sensors. I guess they got over it.

The call came in two days ago and I have managed to organize my life for the next three weeks around going to DC. And there is a thrill in doing this organizing. The prospect of being a clinical trial subject is fun but the process to get there, be on my own, stay by myself and do daily tasks is even more inviting. My sister Marty is close by so Bob won’t get too wound up and public transportation will get me around – and of course there is always applying a few bucks for a cab if I get lost. The guys at the hotel – Timmy and Johnny – were always right there to help me and I’m staying at the same place. Still, quite an adventure.

I will report from the road.