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.

reset

Not all therapy is good therapy. Please let me explain.

I just completed five months of physical therapy.  The therapists and I set goals and every two weeks we mapped my progress towards these goals and in the end, we determined I was not progressing to justify continuing after this month.  Most of my issues revolve around walking and a fear of falling.  We tried Botox a new leg brace and mental exercises to deal with anxiety concerns. The therapists have their “cookie-cutter” treatment path that’s scripted.  Bob and I believed the scripted therapy did not work for me. The harder it got. The more I withdrew and the more therapy I received, the worse I got. My attitude became negative I think because I was not accustomed to failing. I stopped looking forward to attending.  The last session anti-anxiety drugs were recommended and I was not willing to do this so I decided to see if I can progress on my own.  I believe I needed time away to let sink in what they were trying to do.

I think I missed the target so rather than continuing to spend dollars. I elected to stop and figure it out on my own. I need sometime to figure out how to move forward.

In lieu of therapy, I’ve decided to focus on my volunteer work.  I have to walk challenging terrain, take messages, and answer calls.  It is a thrill on Thursday morning to say I going to work now.

Lost

I started therapy last year and after 5 months I am showing no signs of improvement.  Bob agrees and is equally frustrated. In fact, he thinks I have regressed.   At the core, my walking is no faster nor am I taking the desired big steps.  It occurred to me today during my physical therapy session that I could spend every day all day doing therapy but I choose to live my life. For example, I start with stretching and core work before I even get out of bed then during the day balance exercises, sit-to-stand emphasis on left leg strengthening, and walking, recumbent bike ride for the aerobics. And then at night more core work.  The question is do I focus on the multi-day ,multi-hour unsupervised therapy at the expense of my other activities while I am still physically able, hence, the title of the blog. The answer is what I’m wrestling with. I tend to prioritize things I am interested in doing such as reading, watching TV, volunteer work, Internet, etc. I have to resolve this question in my mind

Reality

“I’m struggling, not suffering”

These are the words spoken by Alice Howland in Still Alice.

They completely resonated with me.  They also are what I often want to say to people who want to know what it’s like to live as a stroke survivor.  I’ve covered this ground before, yet, the movie and book resonated so deeply I thought it warranted repeating.  Surviving a stroke is who I am, how I define myself and how others will continue to define me. BUT, I am so much more.  I’m a wife, a sister, a daughter, an aunt and a friend.  I’m an active participant in society.  I have two volunteer jobs and my brain works reasonably well. However my body doesn’t allow me to do the things I used to like, such as run, bike, walk, kayak, walk in heels, etc.

Below, I quote a few lines from Lisa Enova, author of Still Alice. She says it so much better than I ever could.

“I know I have people I love dearly. I have things I want to do with my life. There are many moments in the day of pure happiness and joy. And please do not think that I am suffering. I am not suffering. I am struggling. Struggling to be part of things, to stay connected to who I was once. So, ‘live in the moment’ I tell myself it’s really all I can do”.   

rehab phases

As my therapy winds down until Botox injections later this month, the neuropsychologist asked me how I felt about my accomplishments to date.  I replied:  “I hope that I have not plateaued because I have so much more to do. “ She wanted me to elaborate and I said, “I want to contribute to our family income by returning to a paying part-time job and get better.”

She asked me to think about my progress to date in another way.

Phase I:  When fresh out of the hospital and rehab, your focus had to be on yourself and getting to independence.  You broke this down into steps.

Phase 2: The next phase of your focus turned to your marriage and your family and how to reciprocate the many kindnesses.

Phase 3: In this phase, you are reaching out to the community and trying to help others through volunteer work.

She then asked me:  “What does getting better mean to you?”

My response was:

Working, improving on navigational skills, vision improvement, maintaining a daily home therapy program.

She reiterated that it is a process.  Everyday think about how you will accomplish your goals.

I related this to my former business world.  The CEO at Compaq always clearly communicated our vision and strategic goals to grow our company.  If we weren’t working on projects/tasks everyday towards achieving these goals, we shouldn’t be doing them.

The bottom line is I need to define what’s next and break that down into the tasks associated with accomplishing the next phase.

It is a process. Stay tuned. 

therapy part 2

I’m now over a month into therapy and the therapists are recommending I go into a holding pattern until I get a Botox evaluation and injections. They don’t believe I can progress without this so I’m waiting until the end of January which is when my evaluation is scheduled. The Botox is for my arm and leg and reduces spasticity.    During the first month in therapy I made minor progress.  They conducted six minute walk tests, testing speed and gait length.   I increased the number of steps I take in six minutes by 20%. Not great, but I’ll take it.  I think I’m most proud that I passed the test from floor to standing.  We never practiced it during the first month but when it came to test time, I popped right off the floor.  I attribute this to the excellent training I received in Kansas City several years ago. 

This past week, they discharged me from speech therapy because I met most of my goals, which included:

-         Attention strategies – slow everything down and check work as I go

-        Memory/planning strategies –write things down using phone apps and break projects down in smaller pieces

-        Speech strategies – slow down rate of speech, pause, intonate, and smile when talking will help intonation.  I still need lots of work in this arena it requires constant practice – good thing I like to talk.

Although difficult, I am challenged by this therapy in a good way and look forward to starting again.

I’m 8.5 years stroke survivor and I’m still doing therapy and s look forward to opportunities to get better

There is no such thing as a plateau in my world.