Monday, March 30, 2015

Paul Harvey and strokes

Recently, I read a short article about people in Great Britain returning to work after a stroke. The statistics I read said that about 65% of stroke survivors to return to work after their strokes.

When I was a kid, I listened to Paul Harvey. He would often say “Now you know the rest of the story!”

When I think of that statistic and my strokes, I am amused. "Reading" that article was a massive chore for me. 

After my strokes in January of 2012, the concept of work was terrifying. I was dealing with unspeakable emotions. I did not know my name though I did know my job. However, I could not speak about my job because I could not speak!

In the hospital, one of my therapists said, “Maybe, you will go back to work in November (2012) in a limited basis.”

Throughout those next few months, that was my goal. I assumed I would go back to work. Nevertheless, as the months dragged on and the fog in my brain started to lift slowly, I realized there was no way I could do the job. 

In my career, I was a high profile trade association CEO, teacher, speaker, higher education professional, and a lobbyist. That is a very demanding and challenging job. Here is a portion of my resume:

EXECUTIVE DIRECTOR
IDAHO ASSOCIATED GENERAL CONTRACTORS: November, 2007 to June, 2012

Responsible for the management of one of Idaho’s largest trade organizations.  Duties included personnel management, budgeting, strategic planning, public relations, fund raising, political representation at a local, state and federal level, coalition building, education, spokesperson training, and acting as the primary spokesperson for the commercial and transportation construction industry in Idaho.

VICE PRESIDENT
IDAHO ASSOCIATION OF COMMERCE AND INDUSTRY: October, 2006 to November, 2007.

Responsible for public policy development, strategy and advocacy for Idaho’s leading business trade association representing a diverse membership of businesses throughout the state of Idaho.

OWNER/CONSULTANT
ENVISION REAL ESTATE SCHOOL & CONSULTING, INC. April, 2006 to 2008

Founder and co-owner of a consulting firm and school specializing in real estate education, counseling real estate brokers and agents in business practices as well as providing counseling services in association management practices.

DIRECTOR OF GOVERNMENT RELATIONS
BOISE STATE UNIVERSITY: January, 2004 to April, 2006

Responsible for the development and coordination of university public policy activities and relationships with governmental entities including federal, state, and local governments as well as the business community, peer institutions, the education community, and within Boise State, Idaho’s largest university, including participation on the President’s Administrative Council, the Facilities Planning Council, and other key planning groups.
                                   
INTERIM VICE PRESIDENT OF UNIVERSITY ADVANCEMENT
BOISE STATE UNIVERSITY: July, 2004 to April, 2005

One of five vice presidents working with the university president, the vice president promotes Boise State through a variety of fundraising, public relations and marketing efforts. University Advancement includes the Alumni Association, Boise State Foundation, Bronco Athletic Association, and University Relations.

CHIEF EXECUTIVE OFFICER
IDAHO ASSOCIATION OF REALTORSรข: December, 1985 to December, 2003

Responsible for the management of one of Idaho’s largest trade organizations.  Duties included personnel management, budgeting, strategic planning, public relations, fund raising, political representation at a state and federal level, coalition building, education, spokesperson training, and acting as the primary spokesperson for the real estate industry in Idaho.

In addition, I was -- am -- a professional volunteer and an elected official.

I was engaged everywhere.

That stopped when the strokes happened.   

My employment ended in June of 2012. I resigned because I realized I could not do the job anymore. The prospect of returning to work in November of 2012 was a pipe dream; however, throughout the winter and spring, I relentlessly did all sorts of therapy with the goal of “returning to work.”

It is not fair for me to say it was a “pipe dream.” The goal of returning to work was not just a goal. It was my incentive to prove doctors and therapists wrong. “I will show you dammit!”

There are degrees of strokes: Minor, major, debilitating, paralysis, etc.   I suffer from exhaustion a lot and assorted health issues because of the strokes and seizures.

What sets me apart is Aphasia, Apraxia, and Dysarthria compounded with medications I need to take for seizures.

For example, I can “read” financial statements. However, I have difficulty expressing numbers. So, I can “read” the number “$2,245,137.15” but, I cannot say it.


I can “read” documents, letters, books, etc. However, it takes a lot of time and I get headaches. I have vision problems. 

Up to two thirds of people experience some changes to their vision after a stroke. I have vision problems in several ways including diminished right peripheral vision, reading, driving, etc.

When “people” say that I am recovered, I smile. I “look fine on the outside.” I am not.

How can I work when 20% of my brain is dead.

So, when I read statistics  “about 65% of stroke survivors return to work after their strokes” that does NOT tell the whole story. 

Wednesday, March 18, 2015

What is wrong with us! A lot: Aphasia, Apraxia, and Dysarthria

This morning, from 10:30 to Noon, at St. Lukes in Meridian Idaho, I participated in the “Aphasia, Apraxia, and Dysarthria Support Group” started a year ago through Idaho State University. We meet weekly. 

So, what is wrong with us?

Aphasia is the name given to a collection of language disorders caused by damage to the brain. A requirement for a diagnosis of aphasia is that, prior to the illness or injury, the person's language skills were normal. The difficulties of people with aphasia can range from occasional trouble finding words to losing the ability to speak, read, or write, but does not affect intelligence. This also affects visual language such as sign language. The term "aphasia" implies a problem with one or more functions that are essential and specific to language function. It is not usually used when the language problem is a result of a more peripheral motor or sensory difficulty, such as paralysis affecting the speech muscles or a general hearing impairment

Apraxia is a motor disorder caused by damage to the brain, in which someone has difficulty with the motor planning to perform tasks or movements when asked, provided that the request or command is understood and he/she is willing to perform the task. Apraxia is an acquired disorder of motor planning, but is not caused by incoordination, sensory loss, or failure to comprehend simple commands (which can be tested by asking the person to recognize the correct movement from a series). It is caused by damage to specific areas of the cerebrum. Apraxia should not be confused with ataxia, a lack of coordination of movements; aphasia, an inability to produce and/or comprehend language; abulia, the lack of desire to carry out an action; or allochiria, in which patients perceive stimuli to one side of the body as occurring on the other. Developmental coordination disorder (DCD) is the developmental disorder of motor planning.

Dysarthria is a motor speech disorder resulting from neurological injury of the motor component of the motor-speech system and is characterized by poor articulation of phonemes (cf. aphasia: a disorder of the content of language).In other words, it is a condition in which problems effectively occur with the muscles that help produce speech, often making it very difficult to pronounce words. It is unrelated to any problem with understanding cognitive language.Any of the speech subsystems (respiration, phonation, resonance, prosody, and articulation) can be affected, leading to impairments in intelligibility, audibility, naturalness, and efficiency of vocal communication.

So, every stroke story is a little different. We all have varying degrees of “issues.” Reading, writing, speaking, etc. are problems.

After my strokes, I attended a summer Aphasia Workshop in June of 2012. It was a two week program, and it helped me a lot. I became friends with several other stroke survivors.

ISU is not involved in the “Aphasia, Apraxia, and Dysarthria Support Group” anymore.  Our group sets our own agendas, arranges speakers and video presentations, etc. Usually, we have about 5 or 6 people attend. We are our basic ground rules:

Everybody who is a stroke survivor and is experiencing aphasia, apraxia, and/or dysarthria is welcome. 

Caretakers are welcome to introduce your stroke survivor, if needed.

However, our survivors want to interact together alone. Though we appreciate and need our caregivers, WE want to be with each other not caregivers!

Our goal for the group:
1.      Survivor—want to be vital, not victim
2.      Acceptance—who we are (AAD) through stroke
3.      Hope—we can get better, not just limited to AAD
4.      Respect—honor ourselves and others
5.      Integrity—confidentiality, dealing with others
6.      Service—helping others
7.      Courage—facing truth about ourselves and our potential

I am so grateful for the friendships I have developed because of my strokes. It is camaraderie that we did not choose but we share things that no one will ever understand.