Century Toil

Last Sunday, my good friend and brother-in-law Doug rode 100 miles on his bike in the rain. So when I set out to swim that afternoon I set a goal of 100 lengths in his honor. 

I love goals and a challenge and grateful to Doug for providing both.

Bob left home and I got the house

Growing up I had a lot of supervision through my parents and 6 siblings.  Pre stroke I was pretty much on my own.  Post stroke I required supervision again.  I’m using the Webster’s definition of supervision as “the process of critical watching and directing of activities or a course of action”. This comes primarily from Bob, friends, personal assistants and mine and Bob’s family. Please don’t misunderstand I appreciate the supervision and attention that comes with it; However, when I’m on my own I love doing whatever I want, when I want. To that end,  the first thing I did when Bob left for the Middle East on Monday was decide to have a party a week later with 6 friends centered around the Emmy Awards, with a 60’s theme. Thanks to Bob and his contract work, I am able to afford to host such an event.

I had a lot of fun during  the week working on my cognitive with the planning the detail, menu decorations, costumes etc., combined the party details with running the household such as making sure pool level is good, clean skimmers, water plants, and managing the yard guy picking up limbs around the yard that could be a fire hazard. 

The most challenging for me is coordinating the staging of the food preparation. Fortunately, I was able to solicit the advice of several family members.  On Friday, I called my  sister-in-law, Karen Matocha, to ask her how far in advance of the party could I make the carrot cake.  She said I could make it that day which as a relief because it takes several hours to make. There is no way on this planet I can make the carrot cake on my own because it calls for 2 cups of grated carrots meaning the carrots had to be peeled first.  To my knowledge, a one-handed peeler does not exist – but I am looking.  The recipe does not allow any margin for error so I had to have a short “pow-wow” with my assistant before we started baking.   She tends to read several steps in advance and want to do things very quickly so we agreed that I would read line-by-line and we would methodically bake the cake.  She was a good sport about it.  The end result was perfection if the reaction at the party is my gauge.  Another area I needed help was how to stage the making, rising and baking of the biscuits.  Laura Bacon is my go-to- expert on all things biscuits. The goal was to have the aroma of biscuits in the air when guests arrive.

Saturday night before the party, I emailed my friends asking if we should call it off.  I felt weird about hosting a party because my friend’s father-in-law died and the Bastrop fires with hundreds of stranded people. I just needed another opinion to help me deal with my mixed emotions.  The vote was a resounding “go forward”.   

The party was fun, several people came in costumes and we laughed into the night.

Of course I can do this when Bob is home but it is so much more fun when I can do it myself and make it all happen.

It’s the little things

Activities that I will describe below make me realize #1 how lucky I am to be alive and #2, sometimes the  simplest little things have the biggest impact.   On Tuesday morning, Bob surprised me with a breakfast stop at a local taco stand.  He knows my favorite thing in the world is to go out to breakfast and through a mutual friend recently discovered a taco shack about 3 miles from home.  It was a beautiful morning, the first with the cool front and the first non-triple digit degree day in 79 days!  We looked at a friend’s house she is trying to buy and then taco stand a block away.  It is only outdoor seating and we ordered migas tacos.  They are fresh, hot, grilled and crispy.  Absolutely scrumptious!  And we came home to Orioles and Road Runners working the trees.

We ate among local residents also enjoying this first cool morning.  We came home and both in such good moods. This is an exceptional taco stand.

As I look back to the goals of the blog to assist stroke survivors in their recovery, I ask myself, how could this blog possibly help? Try to do one small thing that brings you joy a week.  The more spontaneous, the better. Example could include:

Anticipate one thing each day survivor needs without having to ask. Whether it is applying lotion where I can no longer reach; replacing dental floss element, putting cream in my coffee, a simple acknowledgement of the effort each day takes…

This is as much a message for the caregiver as the survivor.  In fact, perhaps as stroke survivors we should aspire and conduct a spontaneous, joyful act for our respective caregivers once a week.

Example for caregiver is: Tell your caregiver to take a “me” day, acknowledge their effort with a “thank you” – it really is the little things that make life a pleasure. 

Therapy - It never ends…

Prior to my stroke, I did some form of exercise 4-5 times a week.  The reasons then were to stay fit, look good in clothes and a bathing suit, stay healthy, try to stave off osteoporosis and almost eat whatever I wanted. My routine consisted of running or some form of aerobic exercise, cycling, weight training and lots and lots and lots of ab work.  Although my routine changed after my stroke, no longer able to run, cycle or weight train, I have to do some form of therapy 4 – 5 times a week.  If I don’t exercise it is a setback for me.  If you are a stroke survivor, I strongly recommend you have a therapy routine.

This blog is to discuss here is where I was, here is what I did and here is where I am today as a result of my routine and the help of Bob, my physical therapist, Programs with a Purpose in Kansas City, and my family, and friends.

Here is where I was:

After 7 months in the hospital and first day at home I was wheelchair bound. I could not stand, walk, sit up straight, eat without difficulty, dress myself, bathe or groom. Any motion was painful. Bob, rightly so, limited the pain meds. One of the more frustrating things was I couldn’t straighten my legs so Bob spent 20 minutes every morning and 20 minutes every evening just straightening my legs.  He did this for 6 months.  Every trip to the bathroom and getting in and out of bed required assistance.  I was in therapist’s vernacular “maximum assist “. Here is what got me to “minimum assist”. 

I was going to get out of this thing. Rules were “if we have to take the chair we are not going”.

My introduction to physical therapy post stroke was at TIRR rehab hospital in Houston. The therapists followed their curriculum. I was hoping to walk out of TIRR but this did not happen.  It wasn’t until I hired a physical therapist in Austin with a background in Pilates that I started seeing major results.

The home therapy focused on getting me walking. My caregiver/spouse and physical therapist had one goal, i.e. get me walking as soon as possible. Just standing would have been a feat since every trip to the bathroom and getting in and out of bed required assistance. Bob spent hours trying to get me to stand in our living room. Like any husband and wife instructional activity, I was stubborn and unwilling to listen, Bob thank goodness, was unwilling to give up.

I supplemented the physical therapy with programs I heard about through others.  One example is Programs with a Purpose in Kansas City.  After my stroke, my sister-in-law, Elizabeth, started volunteering at a stroke clinic in Kansas City http://www.programswithapurpose.com/dev/ the program run by Tracy Netherton, has served as a therapy reinforcement program.  In my case, I will always need some form of physical therapy.   I have found there are many different types of therapy and it is good to consider there is more than one way.  Tracy’s clinic for example has a fit and balance room that simulates environments outside my comfort zone like stepping up on curbs, walking over rough terrain such as cobblestones, walking on uneven sidewalks, etc.

My daily routine consists of

- 20-30 minutes on my recumbent bike

-Squats at ballet bar

-Arm pulley to exercise my left arm

-Left arm weight lifting 10 minutes of ab work

All the above and the relentless concern of a setback keep me motivated to maintain my current minimum assist status.  This status allows me to travel across the country independently, go to movies, shop, grocery store, etc. by myself.