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.

Gabby and me

Gabby and me

I’ve received suggestions from family that I should blog about the similarities between Gabby Giffords and me.

We both had brain attacks; mine from the inside and hers from the outside

We both had bone flaps removed and replaced to stop the swelling in our brain.   She got a composite replacement; mine was the original. We both conducted our rehab and surgeries at TIRR and Memorial Hermann in Houston, Texas.  We both have spouses as caregivers and caregivers who travel; although her caregiver travels millions of miles further than mine.  We are both too young for this to happen. So concludes the similarities.  Some lessons learned that I would love to share with Gabby and her husband, given the opportunity:

The brain can recover

You can be a fully functional individual again

You will still love the things you loved

Never give up…the harder the work the better it gets

It is a hard (expletive deleted) trip, but it’s worth it

Adaptation

Webster defines adaptation as “the process of adapting:  the state of being adapted; adjustment to environmental conditions”

Adaptation is what I do to lead a productive life and enjoy the things I did pre-stroke.  For example most of my adaptation stems from having to deal in a one-arm world with an immobile left arm (I was a lefty prior to the stroke). So to cook, exercise, read, etc. I need tools that allow me to perform with this limitation.  

For example, try to make a key lime pie with one hand! Just separating four eggs with only a functioning non-dominate hand is daunting.  After having a stroke, you slowly realize that some of the things you’ve done before, you can no longer do. You have two choices: 1) Don’t do it. 2) Find the tools you need to make it work.

One night while visiting my sister in Las Vegas, I had a bout of insomnia and found myself watching infomercials. At 4 a.m. one caught my eye, the Egg Yolky egg separation tool. I realized that this tool could be a breakthrough in allowing me to cook again and solve my key lime pie problem!

Meet Egg Yolky.

Click here for more details on Egg Yolky

I have learned to use many other devices to help me overcome a one-armed world. More posts will be forthcoming to share my secrets.

My husband, Bob,  has started a blog in connection with this one:  Caregiver Bobby.  His blog can be found on the left sidebar titled “Bob Bacon’s Caregiver Survival Guide” and covers practical tips for caregivers.

Vanity

Sometimes I dwell on my life before the stroke – July 1957 – May 16, 2006.  I truly try not to because I find it counterproductive and who wants to attend a pity party. When I do allow my thoughts to go there it is generally because I come across something I used to be able to do and can no longer such as bicycle, travel, run, and drive. What got me thinking about my pre-stroke life this time was our friends Paige and Fred Fletcher who are in Taos for a conference.  Fred sent me a text reminding me of a run we did together in Taos years ago.  It was a particularly good run because I was able to keep up with Fred and his wife, Paige and they are real distance runners. To that end, I thought I would post a pre-stroke picture.  On our way to Taos…

Running, allowed me to eat and drink what I wanted and kept me in the work game. I loved exercise and I loved looking fit.

So I enjoyed attention to my appearance. Not for vanity but more like a sport. Fashion, fun shoes, cool and outlandish outfits…I still worry about my appearance, though it’s a different worry now. I need to stand straighter, hold my drooping left shoulder higher and pull up my jeans on the left side. Now it’s about noticing the left side and fashion that works with a stroke.  My husband wishes I would apply the same energy to my physical therapy.  But looking good in spite of injury is important. It is important to my therapy. I mean, what’s the point in working out if you can’t “kick-up” some cool fashion along with it? I wish someone would invent clothes that worked for my left drooping shoulder and shoes that fit over my AFO (ankle/foot orthotic).  Currently I am limited to wearing white socks and tennis shoes every day!  I feel like the poster child for the glamour magazine’s “fashion don’t” section.

We have a mantra:  Let’s revel in the things we can do and not in what we can’t.