Winter Solstice

 I mentioned in my last blog, that it was essential for me to get back on the bike as soon as possible after my accident. I simply cannot let accidents set me back.   Because I had to return the loaner to St David’s, we bought a new bike or rather a trike.  The twenty year advances in technology from my borrowed St. David’s trike to my new one, Catrike, are astonishing. It is leagues ahead in seating, configuration, pedaling, steering and shifting, It is compact, comfortable and a beautiful lava red. It has disc brakes, the equivalent of 27 gear choices, tighter steering, etc. These advancements allowed me to shave two minutes off my loop time today.  Currently because of my accident, Bob will only let me ride close to home. Bob requires that I wear a helmet since as he says:  “I’m traveling with no spare, remember.”

Ultimately, I will travel farther and farther and this will become my freedom machine.  I won’t have to take a caregiver whenever I leave the house.  I have visited the neighbors for the first time since our cul-de-sac party four years ago.   I stay out as long as I want.  Unsolicited, the neighbors all commented on the lighted metal palm and how much they like it.  We call it our winter solstice with thoughts of summer. When on my trike my thoughts are consumed with my freedom and not being a burden on anyone.  

a funny thing happened . . .

My last line on my last blog on Thanksgiving Day was:  on this Thanksgiving Day, I am thankful just to be here when I wrote this I wasn’t thinking about the fact that I did almost die as a result of my stroke.  I was thinking that the world is a wonderful place and I’m glad to be in it.

 On Thanksgiving Day I went for a bike ride on my loaner recumbent trike from St David’s rehab. We were going to our neighbors for dinner so I just wanted a quick ride to work off breakfast.   I remember turning right off of our street to first go up the steep hill.   The next thing I knew I’m in an emergency room having crashed the trike by going downhill too fast, turning too quickly, rolling the bike, finding myself in a ditch and yelling for help.  Fortunately, Bob was in our driveway and heard my call for help.  He found me in the ditch put me on the bike and rolled me back home and up our steep driveway with me on it. While heading home he was asking me my name, his name, where we lived, who our President was, etc.  I could not answer any of the questions so he took me to the emergency room.  After tests and consults, the decision was to transfer me to Brackenridge hospital.  Because I take a blood thinner and the CAT scan revealed a brain bleed, they wanted to keep me under surveillance for 24 hours. The next day I was released at about 2:00 and my craving for a Thanksgiving meal was powerful. Fortunately, our thoughtful neighbors brought leftovers from their meal that I missed. I had no idea when I wrote that last line that I might not be in it the next day. None of us ever know so two days later, I picked up my bruised ego and got on my trike because glad I am here to ride again. Theodore Roosevelt said:  “Do what you can, with what you have, where you are.”

Thanksgiving

I was hopeful that the title of my next blog was “Triumph” and that I mastered the steps that were giving me such difficulty.  But I have not yet mastered these steps, I’ve practiced and practiced and until I consistently walk up and down with minimal cane use, I do not consider myself triumphant.  I did have an interesting experience this week that I think is worth mentioning.  I was asked to speak to a group of 30 seniors at The University of Texas who are studying communications for adults with speaking disorders.  Because I attended three semesters at UT Speech & Hearing, a graduate assistant asked if I would be willing to share my experience here and how it helped me.  I gave a 20-minute talk with 10 minutes for Q&A.  It was organized in 3 parts:

1. What happened to me?

2. My experience at UT Speech & Hearing

3.  My life today

I think it went well.  My assistant, Katherine, attended and her roommate, Lauren, was one of the students in attendance.  Katherine asked Lauren for some feedback afterwards.  Lauren told her she said she loved the presentation and that the professor talked about and quizzed them for an hour afterwards.  I wish I could have stayed for that part!

I really enjoyed preparing and delivering the speech.  A lot of credit goes to Bob for helping me write and practice.  My favorite line he gave me as a close was:  “This talk is supposed to be about how to deal with adults in therapy.  If I can only impart one thing, it would be to, “Treat us like adults who have had an injury that is making us act like children.”

On this Thanksgiving Day,  I am thankful just to be here.

good days ad really bad days

I hate to be negative but today was a disaster.  I headed out for my final PT session and to get to my car I have to step down a 3 inch step.  I couldn’t do it.  Bob removed the “prop” I typically use to hold while I step down specifically to get me used to doing this on my own. I froze and have no explanation for this; my mind would not let my left leg go down. The fear of falling is minimized because Bob is right there to catch me. Bob said, I couldn’t go to therapy unless I made this step. Just as I was about to call the therapist, Casey, to say I couldn’t make it, I was able to step down.  Since this is my last therapy session until January I was supposed to maximize my time and get the necessary homework to have a home program until then.   She tested me on my 3 goals:

1.       Walk outside in the grass unassisted

2.      Walk up and down steps outside unassisted

3.      Walk unassisted, no cane, with a glass of water without spilling any water.

·        I didn’t do the first 2 but did fine with number 3.

·        That spells disaster to me. These 3 things should have taken 15 minutes but since I failed miserably, I used up my entire last hour. What a waste!

4.       Casey said: “I wouldn’t push you so hard if I didn’t think you could do it.”   I am extremely frustrated as a result.  I guess everyone has bad days and I need to shake it off and get my confidence back.  I’ll try.  When I think about the east coast Sandy survivors, my issue pales, and I’m embarrassed to even bring it up.

On a positive note it has been a good week from a cognitive perspective. e. g, Spanish, voting, and writing a speech to give to UT grad students in November.  But I don’t want to “sugar coat” the bad stuff because I need to improve.  

So I will shake it off, put one foot in front of the other and get over it ---I am even going to do it on grass. 

"Much ado about..."

Last week I wrote about trying hippotherapy which is a form of physical, therapy in which a therapist uses the characteristic movements of a horse to provide carefully graded motor and sensory input.

I was very nervous about trying this for several reasons.  They were:

It was so new and different and I’m not really comfortable riding a horse

I had to sign about six waivers in the event of an accident

My husband and several family members thought I was crazy to try it because of the risk of a horse bucking me off and getting hurt.  The reality is if I break something and wheelchair bound again, it is game over for me it could mean a nursing home because I can’t and won’t put Bob through another round of full-time care.  The night before I texted my friend, Gigi about my reluctance. We drove out to the stables and arena the next morning and it couldn’t have been a nicer day and the therapists were great.  We practiced what it might be like to mount a horse

(They simulate it by putting a blanket over a barrel that is the exact width of the horse). I just backed up, sat down and they pulled my left leg over so I wouldn’t hit the horse in the head.  Then we immediately applied this on the real thing.  Sven a Norwegian-Welsh breed horse or as Bob called him “plug” because he was so slow.  We walked around their arena for 30 minutes with two people on each side of me.  I have to admit I did get a sense of what actual weight-shifting is supposed to feel like.  The therapist recommends this therapy 1-2 times a week for 3 -4 months.  Bob and I are assessing whether we will pursue due to the cost.   The moral of the story was I made much ado about nothing.  I’m also reminded of one of my favorite phrases:  “don’t pay interest on a loan you haven’t taken out.”  

Try anything once

Recently, my friend, Gigi brought to my attention a form of therapy called hippotherapy.  It is defined as:  a form of physical, therapy in which a therapist uses the characteristic movements of a horse to provide carefully graded motor and sensory input. Gigi owns a horse and discovered an organization in Austin Called R.E.D. which stands for Riding Equines for the Disabled. This past week we met with a therapist from R.E.D. to evaluate if I was a candidate for this type of therapy.  She wants me to try it next Thursday.  I think it will take at least that long to get my nerve up to get on a horse. 

I asked the therapist, Jennifer, to write a paragraph on the benefits of this form of therapy.  She wrote:  “A disabled individual can attempt to benefit from the horses symmetrical, rhythmic weight shift through the pelvis. The horse is the only “equipment” that facilitates a pelvis through all three planes of motion—similar to the motion needed for walking. The pelvic muscles are stretched, activated and engaged the entire time the horse is walking.  Working up from the pelvis, a person’s trunk is adjusting to the lateral weight shifts and counter rotations from the pelvis—again, similar to the motion needed while walking.  As an individual gets stronger through this type of therapy and gains more symmetrical balance, therapy then uses this basic support to progress to the left side with range of motion, elongation, eccentric and concentric activations.”

If you have followed my blog you know that my issues center around weight shifting. I tell myself there is no magic bullet to get me walking correctly, but this just might help me improve my walking. I have to try it.  

Remedies

There seems to be one remedy for every need.  Casey, my PT, could not comfortably approve more therapy because I had not shown enough improvement.  She put me on hold for two weeks instead of four months to give me time to work through my reticence for weight shifting. I think she was as concerned as I was to have such a big gap in my therapy – a remedy.   I start up again next week. And thanks to Bob’s coaching I’m hoping she will see some improvement.  Casey also works with me on the treadmill.  While on the treadmill, I look out the window and yearn to exercise outside.  Her remedy was to introduce me to Bob, her colleague; Bob is responsible for managing the use of a recumbent bike at the clinic.  Last Sunday, Bob delivered the bicycle to our home. He, along with my Bob, checked me out in it to make sure I didn’t crash and burn.  I put 4.8 miles on it on Monday and again today and absolutely love cycling outside. To get started, my Bob is behind me with a leash and easing me down the hill while I’m squeezing the brakes so tight because our driveway is so steep. I truly don’t have the words to describe how it feels to be outside riding a bicycle.  The freedom, the sun and wind in my face, and the dogs I have to dodge. There is a remedy – keep moving forward. 

Failure

Failure - should never be an option

When it happens however, you just have to deal with it. Such is the case with therapy and me today. My therapist cannot recommend ongoing therapy for two reasons. First changes in Medicare limit the number of annual sessions and I have exceeded mine, and two, she has to prove that I made significant gains with therapy over the last two months. Unfortunately, I have not made these gains. I agree with her assessment as does Bob. It is simply too expensive to do therapy for so long and not apply it at home.

Let me to explain. Since July I have participated in physical therapy twice weekly at St. David’s rehab in Austin. My PT, Casey has been great, very challenging. She was able to get me walking regularly without my cane, both inside and outside. Walk on the treadmill without holding on to the bar, ride a recumbent bicycle outside, and teach me what it feels like to truly weight shift on the left. I have to say, it is the most unnatural feeling to weight shift to the left before I move my right foot forward. It is supposed to feel like I’m falling to the left. Bob’s theory is that I don’t see my left side; therefore, I don’t know what’s over there.

When I fail, I realize I have two courses of action. One is to “take my toys and go home.” Or two, get mad and show Casey that this is simply a break and she should take me back in January. I choose #2 that I can do this and perhaps I just needed a break to get my mind right. With Bob’s coaching and lots of practice, I believe I can be ready.

I’m going to prove that this setback is temporary.

spontaneous combustion

When I began writing this blog approximately a year and a half ago, I had two goals:  One was to help stroke survivors in their recovery and keep it real and , only write what you would say to your audience if you were two feet away from them.

Yesterday, while sitting in Bob’s shop watching him construct a longhorn for a client, suddenly there was noise as loud as a rifle shot going off inches from my ear.   It shook us both because it was so loud, left me momentarily deaf in my left ear, and shook the ground beneath bob. It took about 30 minutes to figure out what it was---a tire blew on Bob’s gasoline-powered skateboard.  It just blew.

Last night as I was walking to the kitchen to get to bed, my left arm was flapping against my leg; it occurred to me in that second  that my arm will likely never work again.  It also occurred to me that may things may never work againsuch as my left- side vision and aility to drive.  Damn!

Ok, I just broke goal number two because I would never say this to my mother or mother-in-law but I needed it for effect and punctuation so please forgive me.

This is the first time in six years that I feel a little hopeless I just “blew” like the tire, it may just be a spontaneous random thing.

test Adventure

After 30 years of marriage it’s difficult to find new and fun adventures.  It’s particularly challenging due to my stroke, this past week Bob shattered any barriers we had to try something new.  Do I have your attention?

Two weeks ago Bob left Austin to attend the Burning Man festival in the desert.  He and other team members helped a Houston artist assemble a huge sculpture.

I elected to meet Bob on the back end of his trip so I could hear the burning man stories. Bob rented a 40-ft. RV that could pull a 3, 000 lb. trailer.  I flew to Vegas on Wednesday to meet Bob. We spent the next four days living in the RV while we headed back to Austin. This included many first such as camping in RV Parks, eating freeze dried meals, walking halfway across the Pat Tillman bridge, visiting three national monuments/parks in one day (Anasazi ruins, Meteor Crater and Petrified Forest).

We spent the night in Kingman, Arizona, Gallup and Las Cruces New Mexico. The last night Bob grilled venison sausage and vegetables.  We had a feast while viewing the blue moon. I probably couldn’t convince camping purists that sleeping in a RV is camping but it’s as close as I want to get.   We didn’t have unlimited running water, AC, and other conveniences and I gauge the fact that I didn’t shower for four days that I was “roughing” it. I was enthralled the whole time driving 1300 miles. Mainly, I was blown away by Bob’s preparation for the trip. He cleaned the RV of dust from Burning Man prior to meeting me in Vegas, grocery shopped, and planned four nights of meals. What I learned about myself during this trip was at times it was very hard to travel this way.  Just getting in and out of the RV was terrifying I have to push myself every day if want to have new adventures.

connections

I recently made an old and new connection. – Both are important to my recovery

The old connection is catching up with my college roommate.  Funny story, the other day I was parked in front of a nail shop with my sister-in-law.  While waiting to go in, I saw a young woman enter and said to myself:  “that girl has a cute butt and I like her outfit.”   Seconds later, out came my college roommate, Patty.  She exited the shop next door. We lived together while at UT in the ‘80s..  We also vowed to get together soon, which we did.   The new connection is my physical therapist, Casey.  I have worked with at least seven PTs since the stroke. Casey stands out because she challenges me each and every session.  It’s almost as if she has made me her personal challenge to improve my walking. Every session she comes up with something new to try –she thinks “outside the box”. I am fortunate to be working with Casey. Of course, I have to show improvement in order to continue to have therapy approved.  Rekindling relationships with those who knew me before and after the stroke is as important to me as a new relationship to the next step in mobility.

leaving

L

Bob left Austin for the Burning Man festival 2012 yesterday.  I have mixed feelings now that he is gone--ranging from pride to sadness to disappointment.  The pride stems from Bob's involvement with the project’s lead artist almost six months ago.  He immediately took on the role of project manager to lend his experience to the team from Burning Man 2008. The work included 12 trips to Houston, 160 hrs. of work in Austin building frames, brackets, tops, pod bases etc. He did 100% of the metal work for the sculpture. The team could comfortably say if Bob had not been involved, they wouldn’t be ready for the build next week in the desert. For this, I am extremely proud of his leadership role.  In parallel he led a major acquisition effort for one of his consulting gigs.  Also in parallel as always he is my primary caregiver that takes multiple hours per week.  I remain eternally grateful for his support.

The sadness stems from two things.  One, I miss him and it has barely been 24 hours, and 2) he is on an adventure that I cannot share.  I was invited to drive in the RV out to the desert but elected not to go.  I did not push myself hard enough; consequently I am not attending Burning Man this year.   My walking is not where it should be.  I am addressing two major issues twice a week in therapy. I need to be able to step pass my left foot when I walk by weight shifting on my left.  I have to be able to manage uneven terrain with ease and not go apoplectic when it’s not flat or concrete.

What is the saying?  Recognizing and admitting the issue is half the battle.  I am so acutely aware of my issues with walking. My goal by the end of the year is to have improved my gait.  Stay tuned.

Support

If you are stroke survivor you already know the importance of support.  What you may not know is having a support team is even more important.  Let me explain.

I have by good fortune and some luck amassed a support team that nurtures my mind, body, spirit and soul on a regular basis.  My mind is challenged by my colleagues in Portland that allow me to work on key projects for their company. Also for my mind, I read everything I can get my hands on, do word puzzles, converse, and socialize. My mind wants to keep learning…it needs to keep learning

For body, I swim, ride a recumbent bike, lift weights and attend outpatient rehab four hours a week. Also essential for me is a focus on nutrition to keep my weight down in the event Bob or a caregiver would have to lift me.

For my spirit, I need to entertain my mind and keep my body healthy and strong, or my spirit starts to diminish and fade.  My spirit yearns for adventure. I have a wonderful group of girlfriends who have stuck with me since the worst part of the stroke through today. They constantly boost my spirit. About eight of us who have known each other since high school get together to celebrate our birthdays.  For my birthday, I requested we do something different and have a pool party. When I made this request I thought it was safe, because I never thought they would agree.  After all, the two most feared words in a woman’s lexicon are “pool party”!

My soul is fed through Bob, my parents, six siblings, their children, Bob’s parents and his three siblings.  They are a giant recurring source of support, love and encouragement and have been there with me from the beginning. That’s a support team.

frustrating and humbling

At the risk of repetition, I need to reiterate that therapy never ends and ongoing therapy humbles me.  This is both good news and bad news.  The good news is I am able to attend Medicare-enabled twice a week physical therapy at St. David’s rehab to work on my walking - speed, stamina more natural gait, etc.  The bad news is the initial evaluations/tests show how bad I am doing.   For example the therapist conducted a series of tests to measure my balance.  I scored 22 out of a possible 56 points.  So I’m not looking for a sympathy vote, I truly have issues that need addressing.  I’m just excited to be able to do something about it.

What started me down the therapy path again was my friend, Tracy Netherton, and Bob’s sister, Elizabeth. I visited them in Kansas City to get a new leg brace.  I then conducted some fitting adjustments in Austin at Hanger Orthotics.  The orthotist questioned why I wasn’t using the walk-aid that I purchased from them.  Without going into too much detail, the walk-aid is to fix my foot orientation so that one day I might be able to wear regular shoes again.  I couldn’t really answer her question and she told me about a therapist at St David’s who specializes in helping patients walk with the walk-aid. So thanks to a very circuitous route, I’m now getting much needed therapy.

On a completely different note, I attended a beginning of summer party last month and I
 sat with an old colleague.  At the end of our two hour discussion, a comment about my stroke was made.  He said:  “so you had stroke?”  I was thrilled that he did not think anything was wrong with me just through our conversation.  He saw the cane but didn’t ask.  This thrilled me as well.

The two situations highlight the abnormal to normal inconsistencies that I experience daily and the steps I have to take to be normal again.

Keeping it real

When I started the blog, I vowed to make each one help stroke survivors in some way while keeping it light or humorous.  There are some realities in my life that do not allow me to always be positive.  This blog is about “keeping it real.”

This week Bob closed a really big deal. We discussed how to celebrate. Our first thought was to take a trip since Bob has worked nonstop for over 18 months to close this deal which included week nights, weekends, etc. We sat at the table this morning and discussed our options, listing activities like swim in an ocean, walking art tour on canyon road in Santa Fe or Marfa, take a long bicycle ride, hike in Big Bend, and sight-see in San Francisco.  The reality is I cannot easily do any of these things anymore.  Using the Santa Fe art tour as an example, we love the food, climate, art, etc. However, once there we would have to take my wheelchair or rent one since it is very much a walking city. This type of trip puts Bob on duty as a nonstop caregiver. So, it is not much fun for Bob to have to push me up the hilly and bumpy Canyon road all afternoon. 

We asked ourselves, what we did before the stroke.  When we traveled a trip generally centered around personal best activities such as kayaking, running, bicycling, hiking, etc.  Since I can’t do these things anymore, our trips now revolve around other stuff.  Back to our mantra:  “revel in the things you can do.”  .  By the way, I did get a new pair of blue chalcedony earrings as a result of the deal closing.  I am in the market for a new car (more on that subject later.) Now I might be able to get a better car. For now, I cannot swim in an ocean but I can swim 100 lengths in our pool at home.  I cannot walk the San Francisco hills but I can walk 1 mile in my neighborhood.  I cannot ride a bicycle outdoors but I can ride 6 miles on my recumbent bike at home.  I realized there are a lot of things I can do, I can jump on a plane and go anywhere in the world as long as someone is there on the other side to catch me “revel, revel, revel”.