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 time...in 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...

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.

Torn tendon?

Jodie saw Dr. Molly yesterday. She thinks Jodie may have torn a tendon in her foot last week when her foot got caught in the door. Dr. Molly scheduled Jodie to see an orthopedist who specializes in feet and ankles in a couple weeks.

We are hoping to get Jodie's power chair back from the shop soon. She is using a manual chair with leg lifts for now.

Lots going on at work, so she can't just take time off to relax.

Prayers and good thoughts for Jodie.

;)

Power chair woes

Jodie got her power chair last December.

A couple weeks ago, Jodie's power chair surged while she was in the break room at work and she ran into the sink.

We took off work Wednesday afternoon. Jodie's power chair was ready to be picked up. The loaner was ok...bald tires, no leg lifts to prevent Jodie's feet from swelling...but we were happy to have a loaner.

When we picked the loaner up, the throttle pad was still bent up as from when the chair ran into the sink. Jodie went in and talked to the guy in the shop. He thought it had been bent up for her to access easier. He assured Jodie that the power chair worked perfectly.

The next day (yesterday) Jodie IM'd me..."call me." I knew something was not right. I called. Jodie was in tears. The lights were flashing and the chair was stalling every time she tried to move.

So disappointing!

The hardest thing with disability is being at the mercy of others. The power chair is Jodie's independence. Jodie called the shop. We are taking it back in this morning. We have no choice but to follow what our insurance and the shop say to do.

The only comfort we have is that if the chair turns out to be a "lemon" they will get her a new chair.

How many months will that take?

"Um...I'm stuck!"

Jodie has had her power chair since Christmas. It began stalling on her repeatedly, so two weeks ago we took it into the shop. They found a loose contact in the throttle, so they fixed it.

This week the chair started stalling again. Jodie called and made an appointment for us to drop the chair off at the shop this morning. Yesterday the chair did not stall at all, so this morning Jodie called and cancelled the appointment.

Just after Jodie got off the phone from cancelling the appointment, she went into the breakroom at her office to fill her water bottle at the sink. As she approached the sink, her throttle stuck. She rammed into the sink and got stuck.

Another worker came into the breakroom. She greeted Jodie. They were chit chatting, then Jodie said "Um...I'm stuck!" The worker was not able to free Jodie, so Jodie asked her to get the security guard.

When Jodie returned to her office, she had to call the shop back and tell them what happened. After lunch, I went and picked Jodie up and we took the chair to the shop.

I was proud of myself! I backed Jodie's chair onto the lift without flying off the lift. I have had nightmares of that. With the headrest on her chair it is hard to see backing up. I have trouble controlling the joystick throttle. And then, when you are turning the chair as you are backing up, the wheels swivel in funny directions making it hard to back up straight in such a short distance.

After we dropped the chair off we went to pick Eric up from school. We had an hour and a half until Eric's baseball game. We went to the store and sent Eric in to get us a snack.

The shop called. They needed to keep the chair overnight. We drove to the baseball field. It started to rain; within a half hour we got the call Eric's game was cancelled. Third rained out game this week.

Jodie will be staying home from work tomorrow since she does not have her chair. Hopefully I can go pick it up tomorrow, or the shop will have a loaner for me to pick up.

Another day.

Time for "the chair"?

When Jodie and I were kids, therapists, teachers, doctors, our families...everyone, pushed us to use every ability we had to overcome our disability. Jodie had many surgeries as a child so that she physically walk with crutches. Doctors told her to keep walking as long as she could. Use the ability or lose it...push, push.

Her doctor said that the tightness caused by her type of cerebral palsy would creep up from her legs to her upper extremities as she got older. Jodie has been feeling it start to happen, but has been trying to deny it. Now, the doctor and the therapist are saying it is happening. It is time for Jodie to look at using a wheelchair.

Jodie and I have been using scooters for about eight years now, mostly for shopping and when we are out and about. Also, Jodie has been using her scooter to get to work when the weather is nice. We are a mile from her office. It is a nice scooter ride for here when the weather is nice. It also allows her the freedom to leave work when she wants rather than waiting for me to get there. When she gets to work, she parks it in the basement and she walks with her crutches to her office.

As an office manager, Jodie is on her feet a fair amount of the day. Well, that is about to change.

The doctor is sending Jodie a prescription for a power chair. The power chair will allow her greater mobility in tighter spots, such as her office.

We don't know yet if Jodie will need to use the power chair at home. Out home is a one level ranch...beyond that, accessibility is questionable. The hallway is narrow, as are the doorways. Neither one of us were thinking about scooters or power chairs when we moved in here in 1998. Our thought has been to look for a more accessible place when our son grown and out. Maybe a condo...we're not sure.

Readers of this post who aren't disabled might be tempted to feel sorry for us. Readers who have been in a chair for years might say "Welcome to our world!"

Jodie is worried that surrendering to a power chair is an act of "giving up."

I look at my own ever increasing instability on my feet and I realize that I could some day be facing this transition as well.

I see it as facing our mortality. Not mortality as in death, but rather in the weakness of our human shell. A bummer? Perhaps. A chance for growth of spirit? I think so.

The glass half full.

Disability is not for wimps!

Disabled in Japan...getting to know disability

Access all areas: camping trip offers no-holds-barred insight into disability

Immersing disabled with non-disabled to learn and see what it's all about to be disabled.  Camping is a "little inconvenient" as the author says.  

There is a lot about me that you would learn about me if you were with me for 24 hours.  

I love my coffee.  All my coffee mugs have lids.  

I drink everything through a straw.  Coffee....beer...everything!

I kill too much time on the computer.  I can't button a shirt without a small buttoner tool, which I have misplaced.  

Buffets are hard for me...I just don't have good enough balance to carry a plate accross the room without spilling, and if I get a twinge in my back, forget it!   

This doesn't mean I can't do anything....I just do everything differently.

A couple gems from the article:

At Bar in the Dark, my first problem was how to get my beer safely into a glass without it overflowing. I settled for putting my grubby finger over the rim of the glass and waiting for it to get wet. I asked the barman, who was blind, what he does. He said he could tell when his glass was full by the weight.

And:

But the biggest change is in the mind-set of the able-bodied, he said.

"Able-bodied people in Japan are beginning to think of people with disabilities not just as 'the disabled,' but as human beings who can do something for society."

This story is burning the blogwaves

I may as well pass it along. Note the nice response from the company.

California Tortilla Cashier Screams At Disabled Customer Who Accidentally Spilled Tray

Trig has Down Syndrome

Word's do matter:

http://www.patriciaebauer.com/2008/08/29/a-note-about-language/

We are in such a hurry to categorize everything, judge it, and go on.

Calling Trig a "Down's Syndrome child" is lazy, and it strips him of personhood.

Not to be petty...it is not the words that matter, but the intent of the words.  An 80 year old who calls me "crippled" probably is not trying to be mean.

We who know better...people first, and what challenges they face come after.

Why do they mock us?

Jodie was in the backyard Saturday playing with our Dorkies, Bonnie and Clyde. Live wires, they are. Jodie was running around with them, as fast as her crutches let her run. She was talking to our babies.

The kids it the yard behind us were mocking her. They were imitating what she was doing.

I used to go out back more. I don't do much of the yard work anymore, and we are busy, so I don't get out there much. A couple years ago, those same kids would call me names, imitate my walk and movements, and throw small rocks at me. We drove around to the other culdesac and told their dad about the rock throwing.

We need to set up a web cam. I don't know how we can act on this stuff without having proof.

Trip to the tire shop

The brakes on our Jet White (our huge Dodge Sprinter) have seemed spongy at times lately. Last Saturday I took it in the Les Schwab to be looked at. The checked and found that some fluid was leaking through in the master cylinder. The needed part was not on hand, but they would order it. It would be in on Tuesday, so I made an appointment. 10 Tuesday morning.

I took Tuesday morning off, and I was at the shop a bit before 10. For most people, an employee runs out the greet customers in the parking lot when they get out of their cars. They don't do that for me. I went into the shop and a lady behind the desk asked what I needed. I told her I had an appointment at 10. She found me on the schedule and called back to the shop to let them know I was there with the van.

I sat down and waited. And waited. And waited. And waited. And waited. And waited. And waited. And waited. And waited. And waited...


Jet White was right outside the window I was staring out of. It wasn't going anywhere. At 11, an hour after my appointment time, our van was still sitting there, unmoved. I went up and told the lady behind the desk that my van was still sitting in the parking lot, even though I had a 10 o'clock appointment. She called the shop. I overheard her say "I told you guys it was here!"

An hour and a half later the van was done.

I was irritated.

I probably should have gone up to the desk sooner, but I thought maybe they were backed up. I am surprised that none of the employees why our Sprinter was sitting out front for so long.

I tried to explain to the guy at the desk when I paid that I was upset, that I had a 10 o'clock appointment and that the van was not taken back until after 11. I was flustered, the words were not coming out clear, and he was not getting why I was upset. All I got was a canned "Sometimes it takes awhile..."

I get the feeling sometimes that my time is not valued as highly as a non-disabled person, an assumption that since I am disabled, I must not work, so I can wait longer than someone else who is not disabled and who does work.

I do work. I don't like to take more time off work than I need to. I am a cog in the wheel...I need to be there.

I have done business with Les Schwab for many years. I will probably continue to go there. I did not see the faces there this time that I use to see there.

Not much I can do about it...just frustrating.