Thursday, June 25, 2009

Aftermarket add-ons for your wheelchair – Safety and Style

A while back, I wrote about the horn Bill and his brother rigged up for his motorized wheelchair. If you missed it, read "Aftermarket add-ons for your wheelchair - The Horn". Here is the story of a few OTHER additions made to the chair...

We got the wheelchair in early March 2005. To break in the new wheels, Bill decided to take himself to the barber for a haircut. It was a perfect spring day and his favorite Supercuts salon was only about 2 ½ miles from the house. We knew he had enough power, so I checked his wallet on a string, fastened his seatbelt, reminded him about looking both ways at the intersections, kissed his head and sent him off. Little did I know my admonition would come in handy! About two and a half hours later he returned with a buzzcut and a “mad-on”. Dear Lord…he wasn’t gone that long, what could possibly have happened? Through his wild eyes and keyboard banging, I learned that drivers could not see him, they often honked at him, and a couple of times he felt really terrified. For the record, it’s not easy to scare a guy who made his living by running into burning buildings!

Over the years, I’ve learned that there are times when it’s best to just listen and not try to do or say anything. This was one of those times. Once his blood pressure was back into the range of normal, he announced that we were headed to a bicycle shop and Home Depot, in that order. I grabbed my shoes, my handbag and the car keys, and loaded us up into the van.

We got to our favorite bike shop and he sped right to exactly what he wanted – a bright orange flag, the kind that parents generally add to a tricycle or the bike of a small child. Next stop…Home Depot. That part of the trip did not go as smoothly! He was having a hard time explaining to me what he had in mind. Never mind that he had to use “talky” to try and translate! We started to draw a small crowd! Frustrated for both of us, I told him to stay put and went to find a hardware guy! The universe was truly watching out for me that day, because the first guy I found turned out to be an angel in an orange apron! Within just a few minutes, he completely “got” what Bill was trying to accomplish. While he was looking at the chair, he noticed that Bill had strategically angled his walking stick between the chair seat and the handles. He asked if that was working and the answer was “only part of the time”. They had another quick round of discussions and our new friend set about making the necessary alterations. About 20 minutes or so later, not only was the flag attached to the chair, but so was a piece of PVC piping. Both the flag and the piping were mounted to the back of the chair with metal brackets. The walking stick fit neatly into the pipe and his baseball cap fit over the pipe, keeping both close at hand. The flag actually had a joint, allowing me to detach the top part of the flag so that he could get in and out of the van easily. When it was in place, the flag extended approximately 3 feet above his head. It was just enough to make him feel safer when he was out and about on his own. It was really quite ingenious!

A few weeks later, our good friend “Aunty Em” gave him a bouquet of bright yellow (his fave color!) silk daffodils. He loved them and immediately asked me to stick them into the PVC pipe to wedge the walking stick. Turns out, the rattling was making him a little crazy and this was a perfect, stylish solution! The daffodils were a small bit of sunshine wherever he went and never failed to draw a smile.

In addition to the normal wheelchair adjustments and equipment additions we made to accommodate ALS as it progressed there was one final bit of flair added. The chair we received came with 3 sets of removable fenders. So his best friend took the silver set and with the help of an artist friend who details fire engines, added some hand painted flames to the otherwise vanilla looking fenders. When all was said and done….it looked like he’d won a trip to the reality show “Pimp my Ride”!

The addition of the flag allowed Bill to feel more confident when he was out and about on his own – a true blessing which allowed him to keep his independence just a little bit longer. The flowers and the flames were the icebreakers that made the chair a little less threatening to strangers and children. For me….I just smiled and was thankful that ALS only got his body and not his spirit!

Sunday, June 21, 2009

Hey papa....I'm doin' OK!

I no longer have men to honor on Father's Day. Big sigh! I am incredibly grateful to my mom who had to step up way too early to fill both roles when my dad was killed in 1986. She is awesome! I spent the weekend with friends and strangely, my dad and both of my grandfathers have been very close to me today. Note to's probably because I finally slowed down a bit so that I could hear their wisdom! It's the end of the day and I've actually been feeling a little sorry for myself. Boo hoo...pity party's over!

A short history! I'm the oldest of three and my father's (and mom's) first daughter. I was the first grandchild for my mom's parents and the first girl for my dad's parents. In sales, this is called the "sweet spot!" My sister-in-law Flo reminded me tonight that I was truly blessed to have a dad who told me (as did hers!) that I could be and do anything I wanted. Both of my grandfathers spoiled and shaped me with equal parts of love and discipline. Over the years, I've spent countless hours crafting a card or saving money to purchase just the right card and gifts to honor the great men in my life. Tonight I realize that I honor each of them with the gift of the woman I have become, complete with a little tiny spark from each of them. Here are a few of the many lessons I have learned from three great men.
At two (ish), I was a surprise to those that know me, but in this case it's not a personality trait... I really thought I was a driver! I was left unattended for a split second, crawled up into the driver's seat of my grandfather's car, pulled the gear shift into reverse and gleefully rode backwards, down the driveway into the street of a very quiet suburban neighborhood in Van Nuys, CA. My Grandpa Bernie was a fair, but stern disciplinarian and as soon as I was pulled safely from the driver's seat, he administered a single, very firm swat to the seat of my too young to drive bottom. Tears ensued. I went to the judge of my favorite dad...knowing that through my tears, justice would be served! "Grampy spanked me!" My father, an equally fair man heard both sides of the story, held me in his arms and decided in favor of the defendant "You probably earned it!" Case dismissed. I learned very early that there will always be consequences for my actions, but that I could always count on my dad to hear my side of any story. I love this photo of my sister "J" and me which was on my grandfather's dresser for as long as I can remember.
I moved away from home when I was about 23. My parents were equally supportive and helped with the move, but it was my dad who drove with me from Concord to Petaluma with the last load of my belongings. We talked about a lot of things that day, but I remember asking if he was going to miss me once I moved out. I had the cool parents growing up! After a long pause, he said no, that he was going to miss my friends. I was crushed and could not hold back the big aligator tears of my disappointment. He pulled me close and said that I would always be in his heart, so he would never actually miss me. It was a small consolation at the time, but over the years, I've come to understand this single moment in time from his perspective. As a parent, you pray that your children will make good choices when selecting their friends and associates. My parents believed that your character is measured by the company you keep. I am truly blessed and always have been, with some extraordinary friends. I have friends today, that never knew my dad, but I know in my heart that he would have loved them and would be proud of my choices!

From my grandpa Mac, I learned grace, quiet dignity and the fine art of entertaining seven young grandchildren at a formal dinner table. You can see from the photo there was a certain twinkle in his eyes that drew everyone in and made them feel special. My grandmother Gladys was certain that it was her sole responsibility to ensure that we were instilled with civility and table manners. She did a great job, but kids are kids and sometimes you just have to "bust out"...even if you're a big kid!! My grandfather would never defy or challenge my grandmother openly...that could only lead to the woodshed! However, he was a kid at heart and would slip us a piece of forbidden candy, whisper something funny to one of us and ask us to pass the "secret" to one of our parents, or some equally mild mischief. To which, my grandmother would often raise an eyebrow, give us all "the look" and order would once again be restored to her beautifully set table. At one holiday meal, with 15 or so of us seated around a very long table, my father (seated at one end) asked his father (seated at the opposite end) "hey pop, can you toss me a roll?" Without hesitation, my grandpa Mac selected a roll from the linen napkin lined basket and launched a perfect pitch to my dad, who was equally quick to raise his hands and form a two handed catcher's mitt. Thud! All eyes turned to my grandmother who had moved to the kitched for something. Not one single breath, peep, twitch, blink, or other movement came from 7 awestruck grandchildren and 2 nervous mothers, for a full 30 seconds. You could have heard a pin drop on the carpet!!! A (very, faintly) fleeting smile accompanied her trademark raised eyebrow and everyone let out a collective breath. I can only imagine the conversation my grandmother had with my grandpa that night after we were all safely in our respective beds!! The lesson I learned was that good table manners matter, sometimes you need to be serious, but when it gets too serious, it's a good practice to toss a roll!

My dad was and will always be a super-hero. This is one of my favorite photos from when I was in Job's Daughters. The final lesson learned from my dad that I will share tonight is this. It is not the job of parents to just hand things to children or to do all their thinking. My dad told me regularly that his official job was to teach me to think for myself. He and my mom believed that parents are responsible for raising children who can operate independently in the world. His job was to think for himself and just stay a little ahead of me so he would always seem to be wise!
If you think about it, it's really too much work to think for two people. My gift to my dad tonight is to acknowledge the following exchange between us... the coolest gift my dad ever gave me. "Dad...I'm doing/planning to do XYZ". "Are you sure you want to do that?" "yeah dad...I'm sure". "Are you SURE, you're sure?" "Absolutely!" "OK. I have band-aids and bactine ready on the sidelines. The next time we talk, I'm gonna patch you up, pat you on the behind and send you back into the" "OK dad...what is it that I'm not seeing?" "I raised a very wise and beautiful daughter!"

To my dad and rock! I miss you so much, but know that I am a living tribute to each of you. I am grateful for your love and strength. To all the dads out there....EVERY SINGLE DAY is Father's Day. Hug your daughters tight and tell them you love and respect them. Remind them daily they can do or be anything they choose. Tell them you are honored they carry your name and that you are their #1 cheering section. Tell them you will always be on the sidelines with bandaids and bactine. Love them as you patch them up and send them back into "the game" of life. Tell them you pray they will marry men who will respect and honor them. Teach them to hold out for those honorable men. It is the single best gift you can give us.
"It gets a whole lot more complicated when you have kids...The most terrifying day of your life is the day the first one is born...Your life as you know it is gone. Never to return. But they learn how to walk, and they learn how to talk...and you want to be with them. And they turn out to be the most delightful people you will ever meet in your life." Bob Harris, Lost in Translation

Wednesday, June 17, 2009

Learning to laugh

ALS has taught me to laugh. Really laugh...from your belly until you start crying...laugh! And...I'm so very grateful! There are so many scary, crappy, outrageous, ridiculous, sad, terrifying, (name that emotion) moments with ALS. With that said, there are also a lot of really funny (slapstick comedy) moments with the disease, and these are moments I treasure most. They get me through the "I'm so sad I'm sure I can't breathe anymore" moments I still go through almost 4 years later. I have's not what happens, it's how you handle what happens. Laughter was the life saving/relationship saving option for us. Here are a couple of my fonder moments....

Fun with Feeding tubes

The body is a closed system! When you introduce a hole (feeding tube), you "open" the system - but it can be managed. It requires that you pay attention and be completely present to the moments when the system is open! BIG NOTE HERE....If you don't keep control of a feeding tube, you allow pressure that is normally controlled by a stomach wall to run free, and you end up with stomach contents on the ceiling! This BAD but can be especially entertaining if there was red liquid tylenol going into the tube when you let go!!!! Once I regained control of the tube, capped it off and caught my breath, I laughed so hard I cried!

Speaking of feeding tubes....There was a communicaton glitch between the surgeon and his staff when we had the surgery to install Bill's feeding tube. As we were finishing up in the recovery room, I remember saying to the nurse.."Um...Great…we are the proud parents of a feeding tube. I have no idea how to feed it, change it, burp it or put it to sleep! Now what?" Panic and shock ensued! There was a scramble to get someone to give me the fundamentals before we left the hospital. We got a full training the following day! Lesson learned: Humor helps get you what you need.

Garage Door Opener
Bill's brother Howard and another attorney friend of ours agreed to install a garage door opener for me. This led to the installation of an additional electrical panel. I know…who would have thought that an attorney could/would tackle this kind of task?! Bill was a little frustrated that he was unable to help, so he set about creating some mischief for his brother. He found a laser level in his toolbox, waited very patiently, and chose his time to shine a light on the work.
As Tom and Howard were very intently putting the final touches on the work, a tiny laser dot appeared on the wiring. Both men were fully aware of what they should be seeing on the panel and a laser dot was not on the list. Quietly, because he could not speak, Bill was doubled over in hysterics at his brother’s panic. Once the hysteria died down, we reminded Bill that any judge worth his robes would have dismissed any murder charges levied on the guys as justifiable homicide! I think of this story every time I watch a Powerpoint presentation and laugh! Oh…and the garage door opener still works perfectly!