Never in my life have I been so dependent on modern
technologies, equipment and machines. Each morning Patrick is removed from an
adjustable bed, to an electric Hoyer lift and deposited into his power chair.
After which he heads downstairs in his elevator (lift) to the bottom floor. If
we head out during the day, we use the disability van which kneels and has a
ramp to allow him to get inside with his chair. We are blessed to have all this wonderful
equipment, the other side however is that they can and do break down and
frankly Sh@# Happens.
The Van
A few months back we got our first experience with the van “breaking
down.” We had taken our grandson out to get him a Halloween costume. After getting
just the right costume, we loaded into the van. The van kneeled and the ramp
lowered to the ground as always. After getting settled in, I pushed the close door
button and found that the kneeling feature would not release. We tried several
times and looked through the owner’s manual for any insight into the problem.
So, we decided to try the emergency feature that would release the van back into
a normal position. The emergency feature however, was not responding. Yes, we
were all very stressed out in this moment.
At this point, in my mind I’m thinking – what do I do if I
can’t get this working? In a normal world, we’d call AAA and get roadside
assistance. But, alas I don’t live in a “normal” world, I live in a world that
is too often dictated by an awful disease. AAA really wasn’t an option, so I
contacted my son-in-law Justin, because frankly he’s a handy guy. I thought perhaps
I didn’t have the strength to pull the emergency cord tightly enough and at a
minimum we could get Anthony back home. My belief that Justin is a handy guy
proved correct, he removed the seat in the back and traced the emergency cord
to its source, removed all the casing on top and found that someone had
disconnected the cord. So, he reconnected it and got it working again. This was
a temporary fix but it got us home that night.
Later that week we took the van in to be fixed which unfortunately,
the only mechanics for these devices are all about 30 minutes away. The actuator
had to be replaced, an expensive repair indeed.
Recently, friends of ours, Bob and Therese, had a similar van
breaking down experience. They got Bob loaded up in the van only to realize
that the van battery had died. So, Bob was “stuck” in the van. They took the
van over to their local Pep Boys to have the battery replaced and Bob stayed in
the van while the work was completed. This image of Bob in the van during the
repair, is amusing to me, I’m only bummed Therese didn’t get a photo. The life
of an ALS patient and their caregiver is often so strange you have to laugh.
Here is a photo of a bunch of us at a local ALS conference (Shelly, writes a blog chronicling her life with ALS, you can check it out at shellyhoover.wordpress.com)
Bob said I could include the picture but needed to photo shop in large muscles
for him… hmm…
 |
| BR: Therese, Shelly, Heinz, Betty FR: Bob, Patrick & Me |
Electricity and Breaker Boxes
We use a lot of electricity, in fact, according to the
monthly environmental statement from the City of Roseville our home is in the
top 10% of users. I’m not proud of this fact but I’m not surprised either. On
the flip side we are very low water users – our drought tolerant landscape
probably has a lot to do with that. The truth is with a house full of machines
and most with battery back-ups there is a reason for our high use. We are
absolutely electricity dependent and if the zombie apocalypse hits anytime
soon, we are not going to make it.
Each night I take a walk through the house and make sure
everything is plugged in. I remember a time when all I worried about was my
phone being charged but now that list is a bit longer. The list includes a
speech generating device (Tobii), Microsoft Surface computer, gyro mouse,
electric lift battery, power chair, a breathing machine, and of course phones. It really messes
things up when I forget to plug something in, so this is an important process.
Recently, after I had just got Patrick into bed and was
plugging everything in. I notice the backup lights for the power chair went
out. I looked around our bedroom and realized that the electricity was out. Unfortunately,
it was about at this same time that Patrick started coughing and wanted the bed
set up higher. Which, because the electricity was out I could not do. This was
a very stressful moment and my first thought was because of all the equipment in
the bedroom, I must have popped a GFI switch. To which, I frantically ran throughout
the house pushing all the different GFI switches trying to get the power back
on. Fortunately, because I’ve managed Christmas lighting I am aware of all the
GFI switches and where they are located. However, none of the GFI switches made
a difference in solving the problem.
At this point Patrick’s coughing had subsided and he remembered
reading the “Neighborhood page” that kids were going through neighborhoods and
switching off breakers as a prank. I must say honestly that I was not in a good
mood, so I grabbed a flashlight (it was around midnight) and headed outside to
the breaker box. I immediately noticed that the panel door was opened and that
someone had indeed popped one breaker – fatefully, the one that went to our
bedroom and bathroom. Our house being located next to an open space area and
bike trail has always been a target for pranks. In my anger I flew down the
bike trail with my flashlight determined to smack upside the head anyone I
found nearby. Probably lucky for me whoever did the deed was long since gone.
This incident made me realize how truly dependent we are on
electricity. In addition to all the items that plug in, we have respiratory
equipment, a lift, adjustable bed and the list goes on. Fortunately the really
important stuff has battery back-ups but I’d rather not test the battery life
on any of them. Now our breaker box has a pad lock, hopefully this will
keep the pranksters away.
Ms. Fix-It and the Power Chair
I’ve said it before and it’s worthy of a reminder, I’m really
not a fix-it kind of person. Honestly, I just like things to work. I have
to fight my natural instinct to “find someone else” to manage whatever problem
is going on. The power chair is critical to Patrick’s everyday life. Frankly, aside
from showers and sleeping he spends his entire time in his chair. The chair has
proven to be very reliable (knock on wood) but it is a high use item so there
are things to be managed. Recently, the controller extension on his arm became
quite loose. I went through the “goody bag” they give you with the chair with
all kinds of screwdrivers, adjusters etc. but couldn’t find a wrench that work
for the connection that appeared to be the problem. It was stuck between the
arm rest and connecting hinge. I contacted the chair supplier and the following
day they sent out a repair person to fix the problem. She took part of the arm
off, to get to gain access to the screw, fixed it and put it back together. She
proceeded to tell me how I can do this myself, and showed me the various parts
that I would need to loosen or remove. This was not my best moment, because primarily
I kept thinking nope I’ll call your office again.
I worked through my feeling of frustration that another uncomfortable
responsibility had been delegated to me. Realizing if necessary I could fix
this issue if it happened again and although I’m not Ms. Fix in a pinch I
generally can rise to the occasion.
We are fortunate to have all the technological advantages,
machines and equipment available at this time. I’m also acutely aware of the
cost prohibitive factors for some ALS families to obtain some of these items. Dependency
on machines is scary but the thought of not having these items is much worse so
we’ll manage the pranksters, breakdowns and struggles with fixing things.
Hope all is well with you and yours!
