Living and laughing with a disability - cerebral palsy; ordinary life, extraordinary circumstances.

Monday, September 10, 2012

Major Inconvenience - part 2 - update

The email to Providence may have worked!

We just got a phone call from Providence.  They called ATG Rehab and were told that the parts for Jodie's power chair should arrive by Wednesday, and the chair will be ready on Thursday.

I wish ATG would have told us that...and I hope they are right.

Major Inconvenience - part 2

We are going on three weeks without having Jodie's power chair.

Providence In Home Services use to service Jodie's chair.  Now, ATG Rehab has the contract to repair power chairs for Providence In Home.

On August 23, I delivered Jodie's chair to ATG Rehab.  It took a week for them to get the authorization from our insurance so they could begin working on Jodie's chair.

Jodie has been calling ATG Rehab every couple days to see where they are in the  process of fixing Jodie's chair.

As of today, the answer is that parts were ordered on September 4 and it could take up to 14 business days for the parts to arrive.  My math puts that at September 21, almost a month after I dropped Jodie's chair off at the shop.

This has been a real hardship for Jodie.  She is back to using her crutches and a manual wheelchair, both really harmful to her shoulders.  This is really bad because the doctors told Jodie if she did not stop  stressing her shoulders, she could loose use of them altogether.

We hope the parts do arrive before the 21st, but how many days after that will it take for ATG Rehab to get Jodie's chair fixed?  If the shop cannot stock all the needed parts to repair a power chair, why can't they find a faster way to have them delivered when they are needed?

Jodie's chair is more than her legs around the home and around her office.  Her chair is fitted to her body.  It reclines in special ways to accommodate the stiffness of her body and to prevent swelling in her legs and back.

This morning, Jodie called ATG Rehab.  After they told her that parts were ordered and how long it could take for them to come in, Jodie called our insurance, Providence, to let them know how long it was taking to get her chair fixed and that it was not acceptable.  They told Jodie to call Providence In Home  Services and file a complaint.

The lady at Providence In Home Services that Jodie was transferred to did not really understand why Jodie was concerned...that these things take the three-year-old kind of speak that disabled people sometimes get, with the attitude that Jodie did not understand what was going on.

Jodie called Providence insurance back and told them how the lady responded to Jodie's complaint.  They gave Jodie an email address to email a complaint to.

I am now working on the email  What to say...

Sunday, September 09, 2012

Twenty two years

Twenty two years ago today, Jodie and I tied the knot.

The Lutheran church on SE 39th (now Cesar Chavez Blvd.) and Brooklyn....St. Paul Lutheran Church.

I was telling my friends at Special Olympics Oregon how Jodie  and I met when I was three and she was four at Holladay Center in Portland.  At the time it was a school for the physically disabled where classroom instruction was augmented by heavy doses of therapy - physical, occupational, speech - whatever we needed for us to become as independent as possible.

Jodie and I knew each other back then, but we were in different classes and we didn't really hang out back then.  We both left Holladay Center, me in 1973 and Jodie in 1974, to be mainstreamed into public schools.  Before I was mainstreamed, my family moved to Southern California.  They took one look at the braces that I was wearing at the time and they said that I would never be mainstreamed down there.  In 1974 my family returned to Oregon where I was mainstreamed.

Jodie graduated from Portland Lutheran High School in 1982 when I was graduating from Beaverton High School.  Jodie's road took her to take classes at Concordia, Portland State University, and then to Western Business College.  She then traveled around the U.S. with a group called Break Through, educating churches about the need to become accessible for the disabled.

I went to Oregon State University.  I took hard classes and I did not do well.  Engineering, business...not my forte.  I took a class in journalism.  The professors in that department took hold of me and told me "Hey, you are a great writer."  I became a feature writer, a copy editor, and a columnist for the OSU Daily Barometer, a job I loved very much.  After college, I landed a job with World Christian Magazine as an assistant editor.  A great job it was, but the magazine was going under, and I had to raise my own financial support to be there.

In October 1988 I moved home and started looking for work.  I filled out applications and mailed out resumes.  Kind of funny, I remember being a little down at times, but I don't remember being too discouraged.  Something was going to work out...eventually.  I just had to keep moving and stay positive.

In the summer of 1989 I volunteered at a state office in Beaverton.  Don Bougher, the volunteer coordinator, had a Mac computer sitting on the floor in his office.  Kiddies, this is back when computers were still part novelty.  Don asked  me if I could  make that computer sing.  I said, "Yes I can!"  I created a spreadsheet with Lotus 1-2-3 for tracking volunteer hours.

A counselor I went to see mentioned that New Hope Community Church had lots of support groups.  I went.  They had a group for the disabled.  I saw the leader of the group.  "Jodie?" I said.  "Troy?" she replied.  I went to her apartment a few weeks later for dessert.  We really hit it off.  But, I remember thinking, Jodie had a job.  She was working at the Portland Center of  Hearing and Speech as an accounting assistant.  And I, well, I was still a volunteer.

In my quest for self sufficiency, I was packing and getting ready to move to the San Jose area.  A buddy had a room for me down there, I had family down there, and a community college down there had a good program for helping the disabled become employed.

A couple days before I was to leave for California, Don, the volunteer coordinator, spoke with Gary, the Children Services Division branch manager, whether he might have a job for me.  A day later, Gary put my "flying fingers" to work as a typist.

It took a few months for Jodie and I to reconnect.  She was so busy with church that she did not have time for anything else.  When we finally got together in February of 1990, it was pretty evident that we were meant to be together.

Jodie is a great people person and speaker,  I am a thinker and a writer.  We each have strengths and weaknesses.  Together we are greater than the sum of our strengths.   On September 8, 1990, in front a church filled with family and friends, with Pastor Dave presiding, Jodie and I exchanged "I do's".

Twenty two years.  I miss the people who were with us back then who are no longer with us, the grandma's and grandpa's.  Ken, Jodie's brother-in-law, who walked her down the aisle.  Two weeks after our wedding Ken was diagnosed with cancer and four years later he passed away.  My friend Erick, who was supposed to be one of my groomsmen, had tumors in his head, that prevented him from flying out from St. Louis to be in our wedding.

Twenty two years.  Jodie and I had no plans to have kids.  Our plan was to take care of each other and to be as independent as possible.  What's the old adage - if you want to make God laugh, tell him your plans.

Eric James was born nearly 17 years ago.  Yes, life has been a whirlwind since then.

Yes, I do have a book to write.  Do I have the discipline to do so?  Well.....

Monday, September 03, 2012

Judging disability

Judging others is generally seen as a bad thing to do.

It may be a surprise to the non-disabled community that we who are disabled, when we cross each other, tend to judge each other's disability.  It's not really in a bad way.

With my disability, my dexterity is quite affected.  Handwriting is hard for me...and it is not very legible.  Drinking from a cup or glass is difficult for me because of how my hands shake.  I can't button a shirt.  I probably could not drive your car.

When I need to take notes, I use a computer, a recorder, or I have someone take notes for me.  I chug my coffee and water through a straw.  I use a tool called a buttoner to button my shirts, though anymore I rarely wear a shirt that requires buttoning.  I drive a Sprinter automatic with a steering knob.

I walk with some difficulty, but with my walker for shorter distances and my scooter for longer distances, I manage to get to where I need to go,

When I see another disabled person, I want to figure out what their disability is, what their challenges are, and how they have overcome them.

The Paralympic 2012 Games are on in London right now.  For those who may not know, it is Olympic games for people with disabilities.  Thank you Wheelie Catholic for the updates.

I came across this article in the New York Times that discusses how paralympians have their disability judged prior to going to the Paralympics to see what classification they will compete under.

What struck me in this article is how each sport has their own set of classifications.  Athletes can appeal their own classification if they think it's too high, or their opponents classification if they think it is too low.

Once classed, some of the athletes practice so hard and become so good at their event that other competitors believe that they should be in a higher classification.

Then there are 245 athletes who are classified as borderline, which means they could be classed high in one classification, or low in the next.

Judge not lest you be judged, unless you are a paralympian, where you are judged first so you can be properly judged later.

Saturday, September 01, 2012

Major inconvenience

A week ago last Wednesday, Jodie drove her power chair home.  It smelled really hot.  She called Eric and he met her in our garage.  One of the metal tube casings in back of her chair was very hot.

Jodie called our insurance.  They told us to take the chair to a shop in Milwaukie.  The shop in Portland is no longer servicing power chairs.  We were a tiny bit relieved to hear that, because they serviced it earlier this year, the chair has not been holding a charge.  Jodie use to be able to travel from home to her office (a mile) and back twice (4 miles) before her chair needed a charge. Now, a single one-way trip and the chair needs a charge.

I took Jodie's chair to the shop on Thursday...ten days ago.  They did not offer her a loaner, and we did not want one after the accident Jodie had in her last loaner.

It took a week for the shop to get authorization to work on Jodie's chair.  It could take another week or two for parts to be ordered and the chair to be fixed.  I can't begin to tell you the hardship this is on her.

She is using our manual wheelchair at work.  It does not fit her well.  We bought what we could afford, and we bought it for emergencies.

We are leaving the wheelchair at work during the week and Jodie is using her crutches to get from the van to her office.

I have trouble pushing Jodie in the manual chair.  Last night we went to a retirement party at the Fourth Street Pub.  I was having trouble getting Jodie up the curb cut.  A stranger saw me struggling from within the Pub.  He came running out to help us.  The guy had a prosthetic leg.  I was really amazed by his kindness!

Anyway, say a prayer that Jodie's chair is fixed as fast as possible.  It is more than just her ride now.  It is her comfort and her independence.

"People stare at's fantastic!"

I am doing a bit of homework for my volunteership st the Special Olympics Oregon.

Yes, I know it's not a real word.  The position that I applied for was an internship.  When they saw how crazy old I am...and that I am way out of school...they classed me as a volunteer.

I like the internship feel of this.  Ryan, my supervisor, is giving me a variety of things to do.  Right now I am researching some material for SOOR to tweet.  I came upon this wonderful commercial:

Perspective.  It is all about perspective.

I know that mine needs changing.

I bet maybe your',  I'm not going to go there.  I'm not going to start talking to empty chairs.