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.

Priorities

Before the stroke and when I had a career my priorities were:  health, family, remuneration and responsibility.  Post stroke, I “blew up” the health piece, was forced to retire but still have priorities.  They are: family, fitness, fun, and financial contributions.

The family priority hit a pinnacle this week with some key activities and exemplified why it is so important to me.

On Monday my sister, Susie, flew to Austin from Las Vegas with her 21 yr. old son John.  We planned 2 weeks ago to meet at the airport, drive to Houston and spend the night with my parents. I was particularly excited because I had not seen my nephew,   John for many years and he is beginning his 4^th year at Cal Poly. Bob dropped me at the airport and when we pulled up, Susie was in a rental car.  Bob commented “there are 4 people in her car what’s going on?”

Unbeknownst to me, two of my sister Theresa’s children, Angela (18) and Joey (14), flew from Vermont that morning to meet Susie’s plane. Apparently, Theresa and Susie began planning this rendezvous’ four days prior to their arrival.  Needless to say I was shocked when Angela and Joey popped out of the car.  I can’t remember when I felt this elated before.  We drove to Houston, shocked my parents. It’s wise not to give my Mother too much notice for these things to eliminate stress on what meals to prepare and where will everyone sleep.  We determined it had been ~7 years since my parents and John were together John was so engaging with them and he indicated he would like to come for more frequent visits. 

We returned to Austin Wednesday morning, made the obligatory stop at Rudy’s barbeque for lunch, spent the rest of the afternoon at Barton Springs.  We had Mexican food for dinner where my brother John’s son Vincent (21) joined us.   The highlight at the dinner was observing Joey and his art of conversation with his cousin 7 years his senior.  He was “holding court” at his end of the table and I was in awe.

Thursday morning, Susie took everyone home to Vegas with her where she will show them all the tourist attractions.

The conclusion is at the end of the 36 hours with my family, I can with 100% confidence say there was no place else or anything I would have rather been doing. I’m so glad to be able to still do these things that mean so much to me. My nieces and nephews will be moving on to their adult lives and these visits will fade as their responsibilities grow. It is a wonderful time in life.

I believe I combined 2 priorities this week:  family and fun my next blog will cover other priorities.

to adapt or not to adapt

Last time I wrote about living in a one-armed world and adapting.  Sometimes I’m learning I simply cannot adapt and have to ask for help.  Such was the case week ago when I wanted to try a new recipe:  carrot soup with lemon and ginger courtesy of my sister-in-law, Karen Matocha. The recipe called for 4 lbs. of grated carrots.  To my knowledge a grater designed for a one-handed person does not yet exist so I solicited the help of my husband, Bob. He graciously agreed to help and we made this delicious soup together.

This is clearly a case where I think I’m happier that adaptation tools don’t exist because as with most things, Bob simply makes it more fun.   

Another activity I cannot handle by myself is swimming. Last year Bob built a railing so I can walk down to the pool from our patio but when it comes to getting in the pool, here are the steps:  I sit in a chair Bob lowers me from the chair to the edge of the pool.  One-by-one he lowers me onto each step at the third step I can take over and swim laps.  I generally swim laps for about 30 minutes or until “pruning” sets in, whichever comes first.   Getting out is trickier because Bob has to lift me from the edge back to the chair and it requires me to stand putting all my weight on my right foot while he lifts me to the chair.  I have not mastered this step and currently failing at it because the way I’m doing it puts too much weight on Bobs back and if I not careful I will put him in traction.  I wish I could adequately describe the sensation of swimming.  I feel it works on my balance, ability to stand up straight, and works both legs while kicking in a way that my stationary bike cannot.  Even though I don’t feel my left side, it is working it in a way I cannot do with any other exercise. I need to give my friend Edie a callout here.  If it wasn’t for her persistence every weekend last summer to get me in the pool, I would not be able to swim by myself.  Thank you Edie!

Living in a world where you only have the use of one arm

Even though it is no picnic living with a stroke, it is helpful that products have been designed to allow me to work around my disability of only having the use of my right arm.

I make the mistake of forgetting about my left arm and my three visits to the NIH brought this to light. I need to do better and focus on my left side or it will never come back.  More later on what I plan to do about this.

Please allow me to share a few tools given my goal of the blog is to shortcut steps for other stroke survivors.

THE FIRST amazing tool that allowed me to maintain a passion is the Amazon Kindle It took two years after the stroke to discover the joy of reading again and it was 100% thanks to the Kindle. I now read the New York Times daily, the New Yorker magazine weekly and probably 3 -4 books a month.

You will recall I have no left-side peripheral vision; it’s called left-side neglect. While in the hospital and in my speech cognitive sessions, the therapist would draw a fat red line on the left with a magic marker to remind me to scan to the left when reading.  You can imagine that drawing a red line on each page of a thick book or document is a non-starter.  The Kindle reading space is 6” so I can pretty much see the whole page without turning my head.  Another advantage with the Kindle is during page turning, I can use my right thumb vs. having to put the book down on my lap and turn the page.  Reading is now much faster.

The two additional product categories that make living in a one-armed world tolerable are cooking products and grooming products:

Cooking essentials are:

-One-Touch can opener and One Touch jar opener (both can be purchased at Walgreens or Target)

-Immobile cutting board and electric knife

My 2010 Christmas present from Bob was candy apple red Kitchen Aide stand mixer this is a game-changer for my life in the kitchen and expanded my recipe repertoire considerably.

On the grooming side, because unfortunately, I didn’t lose my vanity from the stroke--the style of my hair is always #1 priority.  When Bob is around and has the time he does an amazing job with styling.  Just ask my girlfriends.  When he is away, I need a brush and hair dryer but what to do with only one usable hand.  We bought a tripod for the hair dryer.

I know there are other products that would enhance my life.

The last category is exercise and rehab tools for my disability but I will save this information for part 2.

My dream design product that I am waiting for is a pair of shoes or boots that I can fit over my leg brace that are not tennis shoes. Again with the vanity – sorry.