stop the Madness

When I was working I had an ongoing philosophy pounded into me by supervisors: For every project you are working on set goals and realistic ways to measure these goals.  We would say, “If you can’t measure it you shouldn’t do it.”  My ongoing projects today include:  taking Spanish lessons, marketing volunteer work for the East End Foundation and my ongoing rehab. Here are some examples of goal setting and measurements

For Spanish I set goals with my instructor and we agreed after our next 20 sessions that I will take an exam, if I don’t pass the exam, she will comp me the next 5 lessons. If I do pass, I will continue to purchase lessons from the school

For my volunteer work, I wrote the marketing plan for an upcoming open house for the district. I need to get at least 10 partners to sign up to participate in the open house. I need to at least two articlespublished in local papers promoting the event.

For my rehab, Donna and I will finalize this week but they will include:

1.       Walking from her car to the store without using her arm or a shopping cart

2.      Walking from Donna’s car into our Gallery and once in the gallery, walking to the bathroom on my own.  (I currently rely on Bob because of all the materials around and my fear of falling.

3.      Pick any restaurant that I currently have trouble with and walk to and from unassisted.

4.      Walk from my condo to Hermann Park, using my walker.

There is a timeframe associated with each of the goals.

Over the past year, my walking has regressed. I want to stop this madness and practice, which  is the only way I know how to tackle. There is no rehab lab setting that can substitute for doing in my opinion, particularly when many of my issues are mental.   I haven’t bogged lately.  My goal is try and make sure these are relevant current and useful.  Hope this fits.

Nobody really Knows

“800, 000 people in the U.S have strokes each year.  It’s the number one cause of long-term disability”. Science and medicine have made it easier to keep people alive meaning millions are left with moderate to severe disability. Some have fully recovered and in others their recovery has plateaued. This quote and statement was from a November 23 New Yorker article entitled, Helping Hand, by Karen Russell. The article points out that some researchers believe patients who have had strokes had the biggest gains in stroke recovery the first three months post-stroke.

In contrast, Edward Taub, pioneered Constraint-Induced (CI) therapy and suggests there is “rewiring” of the brain and that CI has been found to be effective no matter how long ago the injury or illness occurred--two diverse points of view.

The point I’m trying to make is that no one really knows and every stroke is different.  What I do know is I do not believe my recovery has plateaued.   As I enter the 10^th anniversary of my stroke, my biggest gains come when I put myself out of my comfort zone. I prefer doing new things versus being in a lab/clinical setting such as a rehab facility.  For example, last weekend I went to Austin to be with my college/high school friends for our annual holiday event. I stayed in my friends “Casita”, complete with plush carpet and steps with no bannister. Because of the challenges the first night I debated checking into a hotel, however, while it was difficult for me I pushed through.  Another example is about a month ago, on a beautiful, cool Sunday morning I craved going out to breakfast, but Bob was out of town.  So I had to walk a half-mile by myself to a local restaurant with my walker.  My goal is to find more out of my comfort zone things to do.  Help me find “those things to do”.

"A Funny thing Happenedon The Way."

With Bob away, this morning I endeavored to make a new recipe my sister shared for coconut macaroons.

I do what I always do when baking, first prepped the ingredients. It calls for egg whites to be whipped.  I pulled out my mixer and when I tried turning it on, it didn’t work so I thought the outlet was dead so I tried another plug close by and still nothing. I pulled out another utensil and went to a plug far away and it worked so I moved the egg white mixture close to the plug that worked and mixed.  By this time I added the coconut and two other ingredients to my Kitchen Aid mixer. I turned it on to mix t and nothing.  Now I remembered Donna putting away an extension cord so I find this and try plugging it in to the good outlet.  But I find that the other end of the plug cannot accept a 3-prong plug.   I contemplate moving the kitchen Aid close to the good plug but this is not an option because it is too heavy.  So I do what any sane American girl would do in my situation – I call Bobby in Taos.  He helps me and I got the first batch baking and thinking to myself, whew!  No more drama. But not so fast I smell something burning and the cookies are baking too fast I realize I have the oven at 425 and it’s supposed to be 325.

So only one batch is ruined.  The moral of the story, “”don’t count your cookies before they’re batched.” 

overcoming the fear of walking

As of today, Saturday, I have overcome my walking issue.  I didn’t really change anything with my walking so I guess in hindsight it was psychological.  Bob was right, as usual.

What happened? Or how did I fix it? I think it was a combination of Matocha determination/stubbornness and family support (more on this later).

I recently watched the documentary, “The Masters” on PBS. Aimee Mullins was quoted.  She is a double amputee athlete and she expressed my sentiment perfectly:  “Of course I have moments of self-doubt.  I just don’t allow myself to stay there.”  One of my sisters is a social worker in Vermont and upon analysis of my challenge she walked me through tools to overcome the fear.

The bottom line is my walking issue occurs because of a fear of falling.  Fear is very real and she explained how my brain works in response to fear and gave me relaxation/mindfulness tools when the challenge reoccurs. If I have another scare, I have three choices, fight, run, or freeze.  Since I can’t run, that leaves me with two choices. Last week I was freezing and now I know what to do thanks to my sister. Walk on…..

setbacks: real or psychological?

In my mind my current setback is real but I am in the minority.

About three weeks ago, I imposed a “no wheelchair use while at home” rule.  I was simply relying on my wheelchair too much, so I put a complete stop to it unless I have to carry liquids or heavy items.  This rule was working.  I could walk to any room or area in the house.  However all of a sudden, I developed a phobia where if there is no wall or item on my right side I couldn’t walk by it.  I am stifled by the fear of falling (real).  If Bob or anyone lends me their hand, I can walk.  This behavior transferred to outside my house. When in unfamiliar territory, I am more reliant on needing to walk with someone close by. When I do hold someone’s hand, the touch is so light it’s a wonder that I need anyone at all (psychological).

So, what do I do?  I practice while at home with the wheelchair near by.  The other day, I got stuck in my closet for 15 minutes because I thought I couldn’t walk, until I finally figured it out. 

I’ve considered hypnosis, but haven’t acted on that yet. My opinion is I cannot feel my left leg, therefore I need more stability; hence the need to hold someone’s hand (real).

The question is, “Where did this come from” and “Why the sudden onset”(psychological)?  At this writing, I’m not sure it matters.  In my mind it’s real and I have to fix it or face the consequences:  staying home. The latter is not an option

gratitude

David Brooks, a New York Times columnist is my inspiration for today’s blog.

His article, “The structure of Gratitude” coincides with my friends’ visit to celebrate my birthday. His premise, “Gratitude happens when some kindness exceeds expectations, when it is undeserved. Gratitude is a sort of laughter of the heart that comes about after some surprising kindness.”  Last weekend, my heart was full of laughter.

The kindness bestowed on me was from my Austin girlfriends. Five girlfriends drove to Houston from Austin and San Antonio.  First they treated me to an afternoon spa treatment and lunch.  Later, they took me to dinner with 10 friends.  Upon arriving at the restaurant a surprise guest approached me, someone I’ve known for 45 years but never see anymore. We ate, drank, talked, laughed and took lots of pictures. Upon reflection the next day, I wondered what I ever did to deserve this kindness. My gratitude is off the charts. I also reflected that these friends knew me before and after my stroke and they don’t treat me differently.  For this I am eternally grateful and my gratitude soars.  

annies adventures part 1

When I started writing my blog I had two goals. The first was that it needed to help stroke survivors in some way and second, I would only write what I would share with someone in person.

I recently visited Madrid with Bob while he attended a conference. I didn’t blog about it because I couldn’t figure out how it met the first goal.

One of my sisters thought there was no way I could go because the long plane ride and my inability to sit for ~12 hours.  This turned out to be a non-issue thanks to Bob.  Yes, the aisles are narrow for walking and the bathrooms are tiny. We managed. The leg room was fine and Bob kindly assisted me to the bathroom when needed.  Once we arrived in Madrid, I was able to immediately begin speaking Spanish and found that my two years of lessons via Skype from a school in Guatemala paid off.  We arranged for a handicap room at the hotel. I learned when you request this you need to understand exactly what you are requesting.  The handicap room, in our case, included a very large walk-in shower.  The larger shower meant smaller living space and twin beds.  The shower had no door or curtain because hoteliers assume you want to roll in a wheelchair.  You couldn’t continuously run the water because lack of a door resulted in a less than optimal experience.  I would not request a handicap room in the future or I would ask questions about the accommodations for sleeping, bathing, etc.

We arranged for a wheel chair at the hotel and our first night Bob and I walked 4 miles to visit a Madrid microbrewery.  Bob walked and I rode. We could have taken a cab, but this was a good way to tour the city.

Other activities included a bus visit to another city, outdoor cafes for tapas, museums, attending conference center activities, and visiting a local artisan market to buy wine and cheese.

The trip was fantastic and upon reflection, just to be strong enough to go to Europe as a stroke survivor met my first goal.  I worked hard through therapy prior to this trip to increase my stamina and improve walking.  I wish I didn’t need the wheelchair but for now this is not an option when the terrain is uneven and when the territory is unfamiliar.

As a stroke survivor, I learned I can travel internationally. I also discovered how much work I still have to do.