Living and laughing with a disability - cerebral palsy; ordinary life, extraordinary circumstances.
Wednesday, June 30, 2010
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.
Friday, June 25, 2010
She is still using a loaner power chair. We had her power chair home from the shop for one day last week when we had to take it back. The guy said one more contact needs to be changed. The part should be in next week and the chair will be ready next Thursday. I don't know why it takes two weeks to fix a contact...but we are at their mercy.
Jodie decided to go across the street to Burger King for lunch today. He feet hang on the loaner chair; their is no leg lefts or foot straps to secure her feet. When she was leaving BK, her foot got caught in the door. She said her foot bent backwards.
When Jodie returned to her office, her left leg was writhing with spasms. She was not able to stand at all.
She called me to come get her. She was in pain. We were both scared about what may have happened to her foot. I left my office, picked up Eric to help, then went to pick up Jodie. We got Jodie on the lift and into the van. A couple caseworkers helped get Jodie from her chair to the back bench seat. We have not figured out how to secure Jodie in her chair in the van yet.
I took Jodie to immediate care. An x-ray showed no break, but it is a sprain. They gave her a boot.
We are very thankful that there is no break, but it is proving to be quite the challenge. Jodie's foot is not supporting her at all. We are using my walker as a chair to get her around the house, but right now we are trying to figure other things out.
Saturday, June 19, 2010
I am his one honorary liberal friend. Awe!
Usually I pick Sam up in our oversized Sprinter van and we drive somewhere for lunch. We were going to do that yesterday, but I actually found a parking spot. It was only two blocks from the Oregonian building where he works, right in front of a couple mail boxes.
It was a gorgeous day. I had room to unload my scooter, so I did. I scooted down and met Sam in front of The O. Rather than wishing him a belated "happy birthday", I commented how thin and white his hair was becoming.
We headed down to the Pioneer Place food court. Sam walks fast. I was keeping up with my scooter.
This one block we walked down, this is tricky to explain...there as a curbcut for a driveway, then a curbcut up to a narrow sidewalk that led to a larger driveway to a underground parking garage.
Sam and I were making our way down this narrow sidewalk at a good clip. We got to the end. A ten inch curb. No curbcut.
Sam looked at me and said "Can you go over that?" I think he read my thoughts - Yes Sam, I'm going to back this puppy up a bit, hit 90, and fly from curb to curb...instead, he helped me back up.
Thinking about it now, I think there should a sign at the beginning of the sidewalk to warn that there is no ramp at the other end...something like "We recognize the needs of the disabled enough to put up this cheesy sign, but we care to little to do anything about it. There is no ramp at the end of this sidewalk...but have a good life."
Please don't forget the "But have a good life" part...it's nice to know you're thinking about us.
After lunch, I loaded my scooter into the van. I tried to do a trick that works some of the time - I tried to close the back doors from inside the van. I pulled the left door part way, put the lift up, then tried to reach over the top of the lift to pull the door closed. As I was flailing about trying to do this, passing cars started waiving at me, as if I was waiving at them! It made me laugh.
I ended up going down the lift, putting it back up, closing the back doors properly, and going in through the front.
Friday, June 18, 2010
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.
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?
Monday, June 14, 2010
Jodie and I found the last 2 wheelchair spots on the far left side of the semicircle seating. Eric sat up high with Jodie's sister Pam. 410 grads...3 hours!
Afterward we met up with Eric. The handicap door closed on me; a very nice guy pried it open for me.
Just a mass of humanity! All Jodie and I could do was go real slow and wait for people to part so we could get through. I don't care for crowds, but people were really nice and let us get through.
Rather than use the elevator in the parking garage, we went around the block to avoid it. Eric did not complain; he did not want to go back in that elevator.
We made it to the van and got Jodie's chair and my scooter loaded before the crowds came. When we were ready to leave, the crowds were there so we just waited.
We made it home by 11. It struck me how we get around and participate in life. It's not always pretty and graceful - a scraped top on our fan, an elevator trying to swallow Jodie and Eric, a handicapped access door trapping me - but we make it through.
Wednesday, June 09, 2010
I parked at the opposite end of the building from where I usually park...easier place to park our rig. I decided to come in with her...glad that I did. The doors are all so heavy!
the elevator was at the other end of the building. It is so dark!
It would be dreamy to not have to deal with disabled stuff. I sometimes think people should see us in action.