Two Events

The confluences of two events this week form today’s blog.  They are:

1.      An award winning documentary, Luckey, about a Connecticut architect, Tom Luckey who is paralyzed when he falls out of a window he designed.  The documentary explores how a crisis impacts your family and quality of life. 

2.      A senior student at the University of Texas studying communication’s disorders interviewed me this week fulfill a course project:  interview one person with a speech/language difference, or disorder that affects their communication in some way. The student asked me quite a few questions about my family’s involvement and how did they react and what are some of the biggest misconceptions about being a stroke survivor?

Today I will focus on Tom Lackey’s experience and how I relate to his experience and some of his messages.   The accident changed his relationship with his wife and son and not necessarily in a good way.

In my case the family relationship was impacted by this crisis in a positive way.  Pure and simple, it brought us all closer together.  I believe my incident also changed the relationship with my family but in a good way.  Tom Luckey explores these areas in the film:

-         He says:  “it is very hard to grasp we have a new adventure; we are on a new life’s adventure.”  “I have to let go of my old life.”

-        “How do I get used to who I am now?”

-        “Who I was gets more and more distant as time goes on.”

A while ago, my sister-in-law, Allison, mentioned I should blog about how I feel?  I couldn’t address this until now because I didn’t know how. Tom’s thoughts above helped me articulate how I feel.     

It has been hard to grasp that this is our new adventure and our “new normal. “When I do explore who I was and who I am, I do it in the context of family. The part that I still question is who am I becoming?

I was and am and hope to always be a:

·        Friend

·        Partner/spouse

·        Daughter

·        Sister

·        Daughter-in-law

·        Sister-in-law

·        Aunt

The only thing missing is being an employee, which I hope to become again someday.

I used to think it was important to hold on to whom I was but now I just don’t think it matters, I/We have to make new memories.

My left arm

I used to be left-handed and am no longer. It shows clearly in my handwriting. Prior to my stroke I was what is called “left-dominant”. The reason this blog is called “stroke survivor” is because I made it through the complications of a massive stroke and every day I have to learn how to manage with a left arm that no longer responds. I could go on and on about the things I will never be able to so again like ride a bicycle outside, swim using both arms, snow ski, and type 120 words a minute. I can no longer chase “personal best” sports activities – something my husband and I enjoyed. If you are curious, tie your dominant hand to your belt and try it yourself. You can see how so many things get harder!  But I’d rather focus on the things that I’m doing to try and make it work again. Remember the mantra:  Focus on the things you can do.

For some reason, my affected arm and hand hangs straight down. Many stroke patients have to be concerned about the bad arm curling up, and the hand clenching, which is why many people wear a hand brace. Perhaps because I exercise the arm the muscles haven’t atrophied. I don’t know. Mine does look different and the weight pulls my shoulder down. I am able to dress myself pretty easily if the fabric stretches since the arm doesn’t fight me. Today is not about addressing my physical appearance with a limp left arm or how I look in clothes, etc.  That’s a topic to address after I have gone shopping.  What I am addressing is the exercises I do to try and keep some muscle tone in the arm, and improve range of motion in the affected shoulder.  Here is what I do:

Arm pulleys that at stretch my left arm above my head or as high as I can go.  I have to wrap my left arm in a sling and tighten it down before I can raise it with right arm. 

Put 5 lbs. of weights in my left hand and using my right arm, curl my left forearm up, keeping the elbow braced between my waist and my chair to protect that elbow joint.  I wouldn’t feel the arm if I hurt it, so I have to pay close attention.

I also have to keep my right side strong, and I use it to help my left.  I have to be able to do these exercises without assistance, so that I’m not depending on my husband or a caregiver to assist me.

At the end of the day I realize my arm probably won’t ever work like it used to. Everyday I try and make it better.

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.