My personal, non-ALS stuff will remain here at stevewhitenc.com. Thanks for visiting!
This is my profile badge from patientslikeme.com...
You can tell from the badge that my arms are the most affected by ALS, with the rest of my body...speech, swallowing, neck weakness, down my trunk, my breathing, and then right down my legs...all in a race for a close second. Click the badge to see a more detailed look at how I'm doing with ALS.
This is my ALS Functional Rating Scale(FRS) history since my diagnosis.
This scale is utilized for tracking disease progression.
If you've visited my site and been confused as to why the change back to the old site after moving to a more streamlined, easier-managed site on Wordpress, let's just say I did an upgrade to Wordpress that didn't go so well. After completely losing the Wordpress blog, not to mention the four entries I had posted, my laptop began taking on a life (or death?) of it's own, and I ended up restoring my laptop's hard drive to it's original, from the factory image. That took up all of about three days from last Sunday night. Things are back to normal now...I only have about 300 unread google reader files waiting.
Saw a forum thread that piqued my interest. It was from another PALS with a feeding tube, like me, and is also growing disgusted over the weight gain from all the sugars in the liquid nutrition supplements, again, like me. I'm getting to the point where I'm thinking about getting another Vitamix blender and having the girls make everything that goes in my tube, except for the meds of course. Anyone know of a Vitamix blender deal?
I couldn't help but to post this video. I think it speaks volumes for love we can get from our fathers, and how appropriate, just before Father's day. Thanks Jill!
I feel, in a way, like I'm accepting defeat... I've finally made the decision to move forward with moving this site to Wordpress. For those unfamiliar, Wordpress is, to a blogger, not unlike the difference between a manual typewriter and the internet. All you do is sign-up, select a theme and the blogosphere is yours for the taking! Sure, there's a learning curve, so until I 'round the corner, the site will be somewhat plain. Therefore, please redirect your bookmarks, read, please comment as you wish. If you want to sign the guestbook, please continue to do so here. Thanks for stopping by!
This morning, after waking to the piercing beeeep...beeeep...beeeep of my empty feeding tube pump, much earlier than I wanted to, I had to just lay there listening to it after realizing my call bell decided not to work...yet. Eventually, the clock radio alarm came on to "Coast-to-Coast AM", much more interesting than the infomercials typically found on weekend early morning radio. The subject at hand was the number of veterans returning home with traumatic stress disorders, which led to a telephone interview with the father of a vet who apparently died of "seratonin syndrome". The claim is that the potent mixture of antidepressants and pain-kilers the military had prescribed were the cause. It's bad enough the sacrifices vets make for this country, but when you add to that the sky-rocketing suicide rate, incidence of domestic abuse etc, and now we're literally medicating some to death, where does it end? Of course, I can't let this rest without mentioning the fact that vets are about twice as likely to get ALS compared to the civilian populace. This Memorial Day, let's not forget the vets whose careers...and lives...are cut short by other than combat-related tragedies.....
A fellow PALS/blogger friend recently confided in me that she'd been jealous of my positive attitude, how I deal with life with ALS. Yet, I'm also jealous of her seemingly impenetrable faith, her devoted husband and kids, and many visiting friends. Why is it that the grass always seems greener on the other side? And her transparency! I've always been one to do almost anything to avoid confrontation, but am I writing ala "la vie en rose"? Would the reader benefit more from more transparency, more details about the ugly side of this cruel disease? Would I? Sure, I've written about some of the more difficult aspects of trying to live with ALS, but she has a way of saying so much without telling the reader how to build a clock, so to speak. (If you're not familiar with the expression, it's "Ask him what time it is, and he'll tell you how to build a clock")I guess you could say that, while I've never thought of myself as having the "gift of gab", I've grown to really enjoy painting word-pictures. They say a picture's worth a thousand words, but I feel there's more satisfaction to be gained from the inverse, with each day a new canvas. If only I could pick up the brush now....
Thought for today... Is prayer your steering wheel or your spare tire?" - Corrie Ten Boom
Just as I knew it would, yesterday's Walk to Defeat ALS has come and gone in the blink of an eye, and I have the red-faced, raccoon-eyed tan to prove it! Along with the exhaustion. But this entry isn't about me really, or the walk, but about the length real friends will go out of their way to make a difference. Some left their families to be in my presence and show their support. This is about real friends like Brandt, Micky and Caroline Brown, who drove 200 miles to be here, after sending my "story" letter out to hundreds pleading for help. It's about true friends like Dolly Witt, whose donations, along with her car club, Wayne County Cruisers, are in the 4-digit category. It's also about the likes of Thelma Nauta, my former CNA, who was at the walk site at 6 a.m. putting up the balloon arches, and stuck by my side the entire walk, taking pictures, keeping me laughing and hydrated. It's about friends, some I haven't seen since leaving Reid Ross High School in 1981, from as far away as Covington VA or Asheville NC. Jerri, Jack, Minda, Greg, Debbie, Josh, Cliff and Cindy. Even coach Bill Starks was there, our only connection a clumsy year of freshman football.
One "friend" in particular, however, wasn't in the limelight, probably wasn't in many of the pictures, but worked tirelessly behind the scenes, rallying those nearest and dearest to me, my family. So on this mother's day, I would like to recognize my hard-working mom, Margie White, as the one responsible for a large part of my successful walk team, with over 30 members. Only she could know what it meant to me to have my sons, Shane-19, and Vance-17 at the walk. Also my brother Brad, whose TBI from the accident two years ago makes him somewhat anti-social. His daughter, Christina and her friend; Betty from Roseboro, a family friend who once changed my diapers. Derek and Shelley from Charlotte, Dan and Jana from Greensboro and Raleigh. So, THANK YOU MOM, and Happy Mother's Day!! There is surely a special place for you behind the pearly gates, for I know without a doubt, your name has been in the "book of life" for a long time now...I love you mom!
L to R: Margie White, Billy Starks, Minda Sheppard Hatley, JerriLynn Hilleson Robinson, yours truly, Greg Taylor, Jack Rickman, Cliff Jones and my caregiver Jean Hayes.
Well, the last week has just been a flurry of activity, as you might have guessed from the cobwebs on my site. There's so much I want to write about, but in the interest of not wanting my few readers to drop like flies, I'll do my best to keep it short.
Arrived at Festival Park last Friday night while the warmup band, "Swampdawamp" was playing...they sounded so much better than their name. Lead singer reminded me of Meatloaf! So we stayed down front on the concrete, about 100 feet from center-stage, even though Paul wanted to move back into the grass...anyone in a powerchair will get this...grass is not fun, especially with a neck weakness! So there we stayed, despite the closing-in of the crowd around us. One obviously inebriated guy, must've been sympathetic to me because of my chair, but this guy started clearing the crowd between us and the stage; he was waving us forward, but even though I have no doubt he could've gotten us right up front, we denied the offer and stayed put. .38 Special was great! They even had a Skynyrd family member, "Donnie"?? Van Zant as another vocalist. Beatiful night!
Stayed at home Saturday, except for a trip to Lowe's for some mulch...my awesome lawn-guy and friend "Rowe" is doing the spreading of it...120 bags so far...and more to do, but the yard is looking awesome, especially now that the pool is open, fountains running. Yes, I know I can get mulch by the truckload, but by the time I pay someone to load it into wheelbarrows and move it to the back, I'm sure the prices would be similar. Went and picked up mom's cake Sunday, her 78th was Monday. Had an impromptu surprise gathering at her house Sunday afternoon. Anyone in the Fayetteville area who needs a "high-end" bday etc. cake, I have a good friend that makes the best cakes I've ever laid eyes or tastebuds on! Anyway, I think all the weekend activity began to catch up with me over there, as I started getting one of those "Hello? Steve's body to Steve's brain...overload! overload!" headaches, and it didn't quit til I got home and in the bed with my bipap on. But it was so well worth it, even though mom, being mom, tried to feed everyone lunch before the cake and ice cream.
Other than that, it just seemed like the past week flew by. I guess the longer days and spring activity has helped with that. I've been piling-on the ideas for changes and updates I want to make to the site, but also want to be careful I keep it relatively easy to update later on in my disease progression, if it comes to that. I hope you're all having a beautiful spring, and I hope to see you all at the first Fayetteville NC Walk to Defeat ALS next Saturday, the 9th. The link's on my ALS/MND page...
Wow, ten days already since my last confession ;-). It's a beautiful morning, and I'm putting my blog entry first for a change, rather than sorting through the junk du jour. Finally, summer has really arrived, supposed to be 90 today, so shade will be at a premium at the Dogwood Festival downtown, midday anyway. I've become somewhat a creature of nocturnal habit, avoiding the sun for the most part, thanks to already-sensitive skin, having already had skin cancer, and being on meds that will make my butt fry like fatback in the sun. Anyway, my awesome friend Paul volunteered to take me down to Festival Park to see .38 Special tonight, part of the Dogwood Festival. Gotta love a free concert outdoors!
About the tree...well, you already know by tonight's destination that I have a taste for Southern rock, which I've always loved, but who would've known or thought that one day, I'd make more of a connection with Dad through Southern gospel music? Last night, Jean took me down to the Crown Coliseum (Bubba-dome), to see Bill Gaither's "Lovin Life" tour! If you think of the Gaither crowd as just a bunch of fuddy-duddies with bad hair-pieces who can sing, you'd be dead-wrong after hearing such talent as David Phelps (my favorite...if you haven't heard The End of the Beginning", no time like the present!), Signature Sound, Michael English or Wesley Pritchard. The high point of the night was my timing visiting David Phelps' t-shirt/cd table just before intermission, because not only was I able to get the t-shirt, but I actually met David and told him what an inspiration his music has been on me since first seeing him with Gaither three years ago; I went that time just to be doing something with dad. After all those years at that dull church, dad's tough exterior was whittled-down after he and mom moved to their current, Fayetteville Community Church. Their choir was part of the show last night. Dad can't even talk about that church without getting emotional, and I caught myself getting emotional last night as well...not far from the tree...:-)
Is it just me?
Apr 14th 2009
Hi, I'm Steve, I'm a PALS (person with ALS)....it's been 9 days since my last entry... I guess I'm getting confused between an AA meeting and a confessional. Just another way of saying I know..I'm overdue for another update.
Despite my attending both a Good Friday night service at a friends church as well as an Easter Sunday morning service at mom and dad's church, I've been feeling particularly down since. Both services had a wonderful message, music etc. But now I can't help but to wonder if I've become so accustomed to the severely limited lifestyle thanks to ALS, that actually getting out into something positive only increases my awareness for what I'm missing out on because I'm usually so tired/exhausted/self-conscious/unworthy/fill-in-the-blank?? I've heard that the closer we get to God, the harder the devil works to push us away; is that what this is?? As much as I'd like to stay positive and cheery for the sake of other PALS seeking encouragement, the harsh truth reveals itself no matter where we fix our gaze. Can someone please tell me how I can fix my gaze on the promise of heaven and eternal life? Is it at all possible to not see the negative and focus on the positive??
Sometimes, things just don't go your way, that's expected, right? Other times, we can't buy a break. I missed last year's ALS Advocacy Day in D.C., I take full credit for that, but here we are again, a few weeks away from this year's, and I'll once again be missing out. I won't take full credit for missing this year, but I'm really just disappointed to find myself in another situation where I won't be going. Some may find this to be a shocking revalation, something I just haven't felt to share with the world just yet. I've signed-on for what will surely be my last "study" for ALS...that's what they're calling it anyway.At the time of my passing, the VA will have someone whisk me away to a nearby VA medical center, where my brain and spinal cord will be harvested for research. Whether I'm around another 5 years or 25, that's what will happen, unless I take steps to reverse my decision to participate. I wonder if they'll still want them if the cure is found in time? Hmmm...
Finally, so it seems, we've been granted a nice, beautiful, albeit breezy weekend. The yellow long leaf pine pollen gives everything outside a yellow dusting...thank God I'm not allergy-prone! Another "cool-snap" this week, hopefully the last for a while.
Try as I may, it's just seemingly impossible not to write about the valleys with ALS...especially when they run closer together. I woke around 5 this morning, in a soggy puddle of Ensure; my peg tube pump connection had loosened, even though it was taped...so I had to be stripped, along with the bed. After being wiped-down and changed, I drifted off again, but before I knew it, it was 7:45, or so I thought; after getting up, making my way to the livingroom and getting my laptop booted up, I noticed, along with the TV not having what I thought should've been on, my computer clock said 6:54!?! It turned out that my "atomic" clock radio was manufactured prior to the new daylight savings time date change, so it finally "sprang forward", springing me right from the bed like some twisted joke played by father time. Despite the morning set-back, and for whatever reason, feeling weaker than I care to admit this weekend, I continue to thank God for every minute...from the wonderful feeling of a friend's love to the sun shining down on my world, bringing a sense of renewed hope that this disease is finite...that this country...this world...is still salvageable. How could we ever think any of this is in our hands alone...?
I was just tweaking the site while the ideas are flowing, and realized my Mar 23rd entry had absolutely no relation to the title I'd given it..."Shattered, but not broken". I had intended to write about the bug I've been fighting for what seems like weeks now...weakness, chills, night-sweats, a knot between my shoulder blades and sneezing my head off, just couldn't seem to shake it. Many of my family members had it much worse in the past month or two, so believe it or not, I feel pretty lucky, even though with ALS a simple cold virus can so easily become dangerous for us pals.
My mouse-arm getting tired these days, so I've begun the process of comparing the different "assistive technologies" available for computer intererface designed to enable those of us without the fine motor skills necessary to use a mouse or keyboard. The two main categories are head trackers, a webcam-like unit that sits atop your computer monitor that tracks a small, reflective dot placed on the user's face, glasses, hat or etc. This device tracks head movement and moves the cursor on the screen in direct proportion, at a cost of about $500. The other category and much more expensive, between $8-10K is the eye-tracking technologies, such as the ERICA (Eyegaze Response Interface Computer Aid). These systems amazingly track eye movement, and use that input to move the cursor, and include text-to-speech for communication when ALS robs us of our voice, I'm just barely hanging on to mine; as well as environmental controls for operating the tv, DVD, lamps etc. There's alot more to say about such AAC (Augmentative Alternative Communication) devices, but these are the two types I'm currently considering. Anyway, I'm considering building another web page for polling other users of such systems, possibly including user reviews, comparison technical specs etc. to help others when they're faced with this same decision. Wish me luck, and if you have any relative input, I'd appreciate you dropping me a line...
Had a fairly good weekend, was able to get out of the house; My live-in, Jean, had been asking about moving into the larger, used-to-be-the-office bedroom, which I'd been "holding" for another use...after being painted "Carolina blue"...but I guess I just felt bad for even hesitating to give her that larger space...that looks out onto the backyard, pool etc., instead of just a brick wall. Long story short, I surprised her with a new bedroom suit bought Saturday, when Dee was with me. No feeling in the world like making people happy!
Finding myself making another blog entry after two weeks...I was so disciplined in the Air Force. What happened? I'm guessing it would be more like work if I were to get into the daily-entry mode, not that I'd use "work" to describe a career in the Air Force.
Been fighting this "bug", (who isn't, right?) that has taken me from exhaustion, sneezing my cereal all over the table, or toothpaste on my cna, to chills and restlessness. It's been more than a week, and it doesn't get better! Some days better than others, but isn't it bad enough to deal with fighting ALS? Gives "fighting a cold" new meaning!
Okay, don't call the pity-party "Po-po", which I discovered today is some new slang for the police!?? Lord, I thought I'd just mastered ebonics! But my eyes are fixed on spring and all the beauty of God's creation! That being said, I'd like to just mention two powerful influences in my life of late. The first is a former colleague I won't name here, but just being on the sideline of his transformation from unrepentant husband/father ho thought he was in control of his life, to exceptionally shining example for all who witness...WOW!! The second...I'm sure she won't mind being pointed out...but Jill is saying so much with so few words in her blog entries, and I guess I have "blogger-envy"! But it's not just her writing style I admire, but her unyielding faith through her struggle with ALS. I feel there's a mesage in the influence these two have had on my life, and I'm praying that God will reveal that to me in the coming days. One final thought..and I guess this is more self-directed than anything, but "If being a Christian were a crime, would there be enough evidence to have you convicted?"
So much better this morning than yesterday, by far! Tuesday morning I found a piece of a broken tooth/filling in my mouth with my cereal, and I didn't think too much of it, until that night, I started getting a really bad headache. Well, I woke yesterday morning around 5:00 feeling awful, my tooth was hurting so bad, it was an upper left molar, or so I thought. Anyway, I had Jean give me an advil gel-cap with a banana and coffee. That eventually took the pain away, but I had Gina call the dentist, and they said to come on in. So Gina started getting me ready while Jean warmed up the van. Well, I stood to empty my camel-hump, and then Gina pulled on my sweatpants while I leaned on the walker. Well, I'm not sure what really happened at this point, because just after she got my sweatpants over my feet, I lost my balance to the rear, and lucky me, I had stepped about two steps forward of the wheelchair to give her room to get my sweatpants on. She was bent down at my feet, and didn't see my walker coming before it hit her in the head. Down I went, walker and all, scraping my back on the chair, but no blood. Then, once I was down, I remember feeling something wet, and thought I guess I didn't completely empty my bladder, but then I slowly began to realize...I'd dumped the urinal on me in the process!! So I had a toothache, a back scraping and a golden shower, all before 9 am!!
The dentist visit wasn't much better, but at least he didn't pee on me! It turned out being a lower-left tooth.And thankfully, he did it the same day, knowing it's a hassle for me to get there. Then I realized the hard way that I couldn't close off my windpipe with the back of my tongue and breathe through my nose, so I had to breathe through my mouth the whole time, gurgling. No telling what's in my lungs. Got out of there around 11:45. SO, Pepper said "I'll show them, leaving me home alone", so they came back while I was in the torture chamber to get Gina's car, and it was a good thing there wasn't much trash in the can. Anyway, Pepper is fine.
Had a pretty good day today, nothing unusual. Mom and Brad were here for a couple hours; I'd told mom she should bring Brad and let him do a few odd jobs for me. One of those was to get my "I love me" wall back up in the new office, since we moved it. So glad to get my AF retirement stuff back on the walls. That stuff really means alot to me. Brad also finally got my US flag out hanging from the front porch. I've always wanted one, and those porch columns are hollow, and I just didn't get it done while I was able, and probably would've buggered it up anyway.
Tonight was a bit different, as I had another visit from someone very special to me, as we've known each other from a very early age, and we share something besides that; she is going through something very difficult, so we're kind of leaning on each other while we catch up. I hope she knows how much she has always meant to me, and I can only pray for her happiness.
Try as I may, I've had the most difficulty with a seemingly simple task. Why I'm unable to get on this blog and make regular updates is beyond me, but I won't give up. There's a very grim reality with having ALS, and I'm pretty sure no matter how illicit my description, truly understanding it isn't possible unless you live it yourself. That reality is, among other unpleasantries, that along with having to watch your body shutting itself down, while your mind stays, for the most part, intact, each day you're almost unnoticeably robbed of another ounce of energy. Before you know it, you're struggling to speak complete sentences without having to pause to take a breath. Holding meaningful conversations becomes draining, to the point you actually look forward to getting to the bed, having that alien-like bipap mask strapped to your face, forcing room air into your lungs where your diaphragm previously completed the task without effort, unnoticeably, taken for granted. Or when eating even pureed foods becomes difficult, where the worry of aspirating food or liquids into the lungs could lead to pneumonia, or your neck tires from bending to drink from the straw.
And that, my friends, is my "dog ate my homework" for not writing more often, only it's too true, I could never have imagined...
Isn't life just one continuous chain of decisions? We get complacent with so many decisions, yet most of the decisions we make on a daily basis define our character... what to wear, eat, do etc. etc. But what percentage of those decisions affects those around you? Simarly, how much weight does said affect on others influence your decisions? I guess that varies depending on several factors, but what if...let's just play hypothetical for the sake of understanding...what if you had a probable debilitating condition, given two to five years to live? Some never make it to a definitive diagnosis, mere months from onset to the end of their earthen existence. Would you choose to be nourished through a tube into your abdomen when you can no longer eat by mouth without choking due to weakened muscles always taken for granted? Would you choose to allow yourself to become dependent upon a machine to breathe for you once your diaphragm muscles become obsolete? Would you still call it life when all voluntary muscles but the eyes have failed you? These are but a few of the decisions made by people with ALS, or motor neuron disease, every day. Every 90 seconds in the US another is diagnosed and another has made their final decision.
Well, I'm sad to report that Miss NC is not the new Miss America, not even a finalist, but I'm sure she'll continue to do her part raising awareness. Anyway, I ran across a local pastor's blog, and enjoyed the following enough to share with you here:
We're never too old to learn. They say time is the best teacher. Unfortunately, she eventually kills all of her students. Still, there are some benefits of growing older. I have managed to pick up a few pearls of wisdom over the past 50 years..... pearls of wisdom that I'd like to pass along to those who are following behind. (Watch your step)!
IF YOU'RE TOO OPEN-MINDED, YOUR BRAINS WILL FALL OUT.
(That's for all my "open-minded" liberal friends who try to remain "open" for anything and everything that comes along).
DON'T WORRY ABOUT WHAT PEOPLE THINK; THEY DON'T DO IT VERY OFTEN.
(Worry about pleasing God. If you please Him, it won't matter who you displease. But, if you displease God, it won't matter if you please the entire world).
SITTING IN CHURCH DOESN'T MAKE YOU A CHRISTIAN ANYMORE THAN SITTING IN A GARAGE MAKES YOU A FORD.
(It's not how you ACT that shows how spiritual you are, but rather how you RE-act).
IT'S NOT THE JEANS THAT MAKE US LOOK FAT.
(Diets are for people who are thick and tired of it).
ARTIFICIAL INTELLIGENCE IS NO SUBSTITUTE FOR NATURAL STUPIDITY.
(People who say something is impossible should never interrupt those who are are managing to get it done. Nothing is more dangerous than a big idea in a small mind).
IT'S EASIER TO GET FORGIVENESS THAN PERMISSION.
(This one speaks for itself)!
FOR EVERY ACTION, THERE IS AN EQUAL AND OPPOSITE GOVERNMENT PROGRAM.
(The only reason our government fights organized crime is because it can't stand the competition).
IF YOU LOOK LIKE YOUR PASSPORT PICTURE, YOU PROBABLY NEED THE TRIP.
(How you spend your time is more important than how you spend your money).
BILLS TRAVEL THROUGH THE MAIL AT TWICE THE SPEED OF CHECKS.
(Life would be far more pleasant if we could make money first - then make it last).
A CONSCIENCE IS THAT PART OF YOU THAT HURTS WHEN THE REST OF YOU FEELS SO GOOD.
(Ever notice that when you listen to your conscience, sometimes it seems like you're in the company of a stranger)?
NO MAN HAS EVER BEEN SHOT WHILE DOING THE DISHES.
(Guys, the safest place in our homes is at the sink. The most dangerous place is in front of the TV with the remote in hand...... at least while the wife is home)!
A BALANCED DIET IS A DOUGHNUT IN EACH HAND.
(It pays to count calories. I don't lose much weight, but it sure does improve my arithmetic)!
MIDDLE AGE IS WHEN BROADNESS OF THE MIND AND NARROWNESS OF THE WAIST CHANGE PLACES.
(All of these health clubs out there are making a fortune at my expanse).
OPPORTUNITIES ALWAYS LOOK BIGGER GOING THAN COMING.
(The problem isn't that we aim too high and miss it, but that we normally aim too low and hit it).
JUNK IS SOMETHING YOU'VE KEPT FOR YEARS AND THROW AWAY THREE WEEKS BEFORE YOU NEED IT.
(This has GOT to be one of the most complex mysteries of the universe)!
EXPERIENCE IS A WONDERFUL THING. IT ENABLES YOU TO RECOGNIZE A MISTAKE WHEN YOU MAKE IT AGAIN.
(Why is it that everytime I think I've graduated from the School of Experience, someone thinks up a new course I have to take)?
BY THE TIME I CAN MAKE BOTH ENDS MEET, SOMEONE HAS MOVED ONE OF THE ENDS.
(Seems like most of us spend our time like it isn't worth anything, and our money like it is).
SOMEONE WHO THINKS LOGICALLY PROVIDES A NICE CONTRAST TO THE REAL WORLD.
(The average person has 66 pounds of muscle, 40 pounds of bone, and 3 and a half pounds of brain... which seems to explain a lot of things).
Just a short note to tell everyone if interested, Miss NC 2008, Amanda Watson, will be vying for the Miss America crown tomorrow night at 8PM on TLC. The reason you may be interested is her platform is ALS, as she's lost two relatives to the disease. Let's cross our fingers, or have someone cros them for us, because if she were to win, it could sure bring more much-needed attention to our plight for awareness and the cure!
What a difference a day makes. Even with the most carefully devised plans, we never really do know what each new day will bring, and today is a perfectly imperfect example. Some of you may know of my latest problem with my power chair. The trouble with these highly complex chairs is that the degree of difficulty getting a repair seems to increase right along with the level of bells and whistles the chair has. Just yesterday we were on the phone with the VA to find out about the status of getting a repair done, and it wasn't looking good, as I'd been told the manufacturer's rep wouldn't be in town until mid-month. They told us to go ahead and contact the rep ourselves; was there something they didn't want to tell me? So this morning, I sent him an email, and Lo and behold, he just happens to be in town! I thought worst case, he'd look it over, hook up a tester and have to order parts. What I didn't expect is just what happened...I'm very happy to report, just as Aerosmith's front-man Steven Tyler belts "I'm baaack in the saddle again"! YeeHaaa! Now to find that fancy-schmancy drink-holder I saw on PLM! :-)
A couple of recent changes to the site: I continue to seek out and post valuable web sites for my "Links Page", to which I've added the category "Accessible Travel". In addition, you may have noticed I've added the "quick links" to my ALSbytes blog, for those of you who may be just a little too impatient with simply scrolling down. I'll also be adding to the "Other PALS blogs" section, as well as banners for GoodSearch and GoodShop throughout the domain. You search, you raise money for ALS research, if that's your choice of charities...or you shop online and a small portion of your proceeds go to your charity. Who knew you could contribute just by searching on "whatever"!? Until next time...
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