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About a year-and-a-half ago, Dr. Bedlack told me that Duke ALS clinic and/or the Durham VA may be getting involved in a BCI study, to which I made sure he knew I'm highly interested. About two weeks back, I was surprised when we received a letter from the Durham VA looking for study participants. The next thing we knew, we had an appointment set-up with the study coordinator for an evaluation to determine elegibility, and that took place here at the house on Tuesday, the 6th. Probably the best thing about this study so far is that the entire study process takes place here at home, from beginning to end, which should be a 12-18 month period. I can't over-emphasize how much difference that makes, not having to travel to Durham; after three drug studies at ALS dx+1 to 4 years, and so many trips back and forth, what a blessing!! Travel is so hard on me, normally takes 2-3 days to recover from such trips. Anyway, after answering a battery of questions about everything from my level of pain to quality of life and current communication methods, Beverly (study coordinator) set-up the system, which consists of a laptop, an amplifier that connects to the laptop, and what I call an EEG cap, which plugs into the amp. The cap is basically a stretchy "do-rag" w/EEG sensors placed for maximum transmission of brain waves to the laptop via the amp. She also showed us the onscreen keyboard, which flashes each character in a random pattern. Characters are selected by counting the number of times the desired character flashes, thereby "training" the computer to identify the user's P300 brain-wave in response to the counting (stimulus). That was about the extent of the first visit.

This past Monday and Tuesday were visits two and three, when I was reminded, I have a big head! The EEG cap, largest one they had, was borderline too tight. During my years in the AF, I almost always had to use the last hole in adjusting the squadron caps. Anyway, day 1 of training went very well, actually got to spell out some simple words on the screen with no mistakes. Day two was entirely different, results-wise. I don't know if it was because I was more tired that day or what, but I had alot of errors. At least until they loaded my data from Monday, anyway, did better after that. The more you use it, the more it learns your key (P300) pattern. One more training session this next Monday, then hopefully I'll be in for the duration, and get a permanently placed system to call my own for the study! Wish me luck!

Spinning wheels

Spinning my wheels on the wet grass from an early autumn rain as I load-up into the van, the girls buckle me in as Cindy battens down the hatches. SO thankful to be able to get {the girls} out of the house today! Even if it was just a trip to the PX/commissary. Such is life with ALS. We'd had an unexpected morning visitor, so we were delayed quite a bit. I could sense the tension in the air, as everyone knows, if we don't get out the door soon, the trip would have to be cut short. What usually happens by the time we get about halfway through the shopping trip is I either get a headache from gawking at all the new stuff I've never seen before, have to "go" or get so goofy from exhaustion that we have to speed through the rest of the list and hurry home. The reality that the only public restroom I can use is one where Cindy is able to accompany me and we can lock the door is a hard pill to swallow. Even though that didn't happen today, I think we hurried through it anyway, Murphy's law being a much bigger deal with PALS. I honestly can't tell you the last time I actually skipped my afternoon nap, and I did that today. I suspect that those unaffected by ALS won't understand that, but I think it's contributed to my longevity and survival.

Thanks for reading, leave a comment!

On "ALS Time"

So what exactly is ALS Time anyway? Well, the way Cindy describes it is "that radar you [PALS] have that signals you for a trip to the bathroom as soon as my butt hits the chair, or is about to". In other words, ALS timing sucks! That's just another day in the life of an ALS patient. No more privacy as you go through the motions of life, needing assistance with literally everything. Privacy? ALS has zero respect for privacy or timing. Yet, I still count my blessings as at least I'm still able to make the trip to the john. Just wish the pulling me out of my chair/off the commode wasn't so hard on Cindy. If it's not trips to the bathroom, it's sneezes, itches needing scratched, fuzzies (3 dogs), random spills and spews, etc. etc., the list is endless.

As I write this, the weather's just beginning to clear in the wake of Hurricane Irene. Hasn't been too bad here. We seem to be right outside the bulk of the rain bands. We're forecasted to get a total of around 2-1/2 inches of rain by the time it's all said and done. We did lose power yesterday about 15 minutes after I lay down for my beauty rest. It was out for maybe 30 minutes or so, and I was able to tolerate it without the BiPAP, but if I hadn't been sitting all the way up... Still working on getting a generator for backup power.

As always, thanks for stopping by. Leave a comment if you please!

Onslow Beach

Another "better late than never" blog post. I just couldn't resist sharing our beach vacation with the family and my loyal friends and followers. As a recommendation from a friend and massage therapist, we decided to look into the possibilities of Onslow Beach at Camp Lejeune. They have a pretty decent beach there with different types of cabins available for rent to military and retirees at a price that simply cannot be beat. I was very happy to learn that they were in the process of building a brand new wheelchair-accessible cabin, to be available this summer. Back in March, we took a day-trip to check it out. The cabin (they call "Ospreys") is actually a modular home on stilts, with a wheelchair ramp that starts at the right-front corner, wraps around the back, the left side, and meets the cabin-level deck at the front-left side. It had pretty much everything you'd need from linens, kitchen-ware, dishes etc., but no maid service (take extra towels!). When we arrived Thursday afternoon, there was a doe(a deer, a female deer) just behind the cabin, at the tree-line. That first full day there, Friday, we had to find the commissary to stock up on everything to get us through the week. There is a very well-stocked shoppette at the beach, but it didn't have everything we needed. The commissary was nice, and the MCX (PX) is huge, but undergoing renovation.

Maura and Hillary went to "DJ Night" at the beach pavilion Friday night, and were excited to have met a couple single marines. Cindy and I only made it to the beach a couple times. There are nice, covered pavilions with wheelchair ramps for a view of the water. One thing I knew to expect there was the possibility of seeing a marine hovercraft, as they've been seen making beach landings before. Didn't get to see that, but pretty much every day there were V22 tilt-rotor ospreys buzzing the cabin and doing what looked like vertical touch-and-go's over the inland waterway.

It was really nice to just have the change of scenery and smell the sea again. The base is alot like Fort Bragg, even has the familiar artillery training rattling the cupboards as we have here at home. The beach is a good three or four miles from the main part of the base, out past the MSA and away from everything. For this reason, I feel I should also point out that if you're more into the commercial-style beach vacation (restaurants, shopping, waterparks, goofy-golf etc) then Onslow beach probably isn't for you. But if you want to just get away from all that, are into catching some waves, walks on the beach and the like, then I hope you enjoy your stay just as we did. Once the morning of our departure arrived, the doe was back, only this time, a buck and two fawns were with her.

Another "short-bus" ride

Did you ever wonder why tv shows, usually police dramas, refer to an ambulance as a "bus"? Or is it just me? I've procrastinated this blog entry for long enough, so here we go.

Let me take you back to July 7th. It was Thursday night, and my throat had been getting sore since I felt like some toothpaste had gotten into my airway the night before. As if that weren't enough, my stomach became unsettled to the point I had to go sit on the pot to see if that would help. Well, I thought it had helped, until I was back in my chair, feeling more and more nauseated, and started dry-heaving. That went on for I don't know how long, not something we care to remember. Poor Maura, had to hold the pan for me while Cindy did something else. Once I thought it had passed enough, my gut was telling me I better get back on the pot. Keep in mind that the life of a PALS is extremely sedentary, and it takes very little to reach complete exhaustion. By the time Cindy'd gotten me back on the pot, I was so worn out from the retching that my whole body was about as rigid as an over-cooked noodle. The only way I can describe the feeling was that I felt so very sleepy. Cindy was really struggling just to keep me sitting upright. That was about the time Cindy started talking about an ambulance, using the term “diaphoretic” (excessive sweating relating to a medical emergency) and that my color was “gray”. Before I knew it, they were bringing in the stretcher. That leads me to the "short-bus" ride.

Ambulance rides for me rank right up there with getting a colonoscopy. Don't get me wrong, I very much appreciate the service, but let me tell you why I'm not a big fan. First, being 6'4”, my feet hang off the end of the stretcher. Secondly, my diaphragm is too weak to support breathing properly, so I have to have my head elevated, which makes me slide down unless my feet are also elevated. So when the driver has to say “watch your feet” as he closes the ambulance doors, voila’, we have the short bus. I won't get into the bumpiness of the ride, but you'd think they'd at least put some premium shocks on these things. The med-tech, who I swear was no more than 5' tall, started an IV and put something in it for the nausea. We arrived at my hospital of choice, Womack Army hospital close to midnight.

In retrospect, I'll take an ambulance ride over a six-hour emergency room wait any day. Anyway, Womack took urine through a cath, countless vials of blood, chest x-rays, and a CT scan of my neck with contrast. It was close to 6 AM before I was admitted and moved to the ICU step-down unit as they had no other beds available. There they took a throat culture for strep, which was negative, and told me my white blood-cell count was high. Also my CK enzymes were a little high, indicating something going on with my heart, but not high enough to have to go through a stress test. I'd been through that and a cardiac cath before, but nothing was found. They also scoped my upper-GI, but it too revealed nothing out of the ordinary.

Long story short, I was released late Sunday morning with not a clue for what caused all this. I'd be remiss if I failed to point out that Cindy never left my side throughout the whole ordeal, except for a bathroom break. Even then, she wouldn't go unless one of the girls or mom was there to sit with me. Never have I witnessed a truer loving devotion than that, and Honey, I am eternally grateful! I love you so much, you're my true angel!

There were a few other angels during my stay who went constantly above and beyond their duties, the main one being my day-shift nurse, Dee. Another, on the night-shift, a male Lieutenant whose name escapes me. One thing that could've made my stay more comfortable was the hospital bed I was in. It was an Invacare VersaCare with some very high-tech features, but they didn't know how to use it. It had a side panel where you put in the patient's weight, and had an alternating pressure mattress that could turn me to each side periodically, as well as sit the patient up like in a chair. One more gripe and I'll be happy. Why in the world can't the different units, wards etc. all use the same type of EKG stick-ons??

Lastly, I truly believe that things happen for a reason, just like it so happened that Cindy's mom had been with us for the week. She was there to watch the girls, not that they needed it, but it made us feel better about being away for three nights.

It's so good to be home!

Saturday night’s alright!

Friday, on the other hand… The day started like any other, Cindy had gotten up early as she’d heard one of the girls knocking about in the kitchen, and I guess we both must have had some inclination to the day that lay ahead. She got me up not long after, but as you CALS can relate, getting a PALS up from the bed is not a simple task. Meds in the tube, chase with water, disconnect tube, rinse bag for reuse, slippers on, bed down, BiPAP off, help sit up, feet on floor, help to stand, …ahem…wee-wee…, wash hands, transfer to chair, wash face, rinse/brush, get coffee…you get the idea. Anyway, the day started with the yard crew coming, but that was only the beginning. Next was the HVAC crew, bringing a new drain pan for the heat-pump in the attic. Around Monday, we’d contacted the HVAC people about the water stain on the newly renovated master bath’s ceiling, which by Thursday night had fallen into the bathroom floor in a mess of wet drywall. Turns out the heat-pump drain pan had a hole in it, so we had quite a bit of wet insulation etc. You’ll just have to trust me when I say this, you DO NOT want to have to buy a new drain pan with the auto-shutoff feature. Next was the DirecTV tech;I’d been mulling over trying the “whole-home DVR”service, which required hooking another blinky-box to the modem, and it required a second coax-in jack, so there was drilling involved. Had to drill down through the wall from the attic;and the guy was way off;several trips to the attic, re-drilling etc. Finally the guy got done, and we still don’t have “whole home DVR”, but you’re not here to read about that. The final “may-as-well-run-a-straight-line”, vamp crew was the water damage repair crew. But they hadn’t arrived by about three hours past my normal nap-time, so guess how the nap went? Now we have this dorm-fridge sized blower blowing hot air into the exposed, plastic-covered wall frame, and into the hole in the ceiling…UNTIL MONDAY!! Don’t even get me started on the insurance! This brings us to Saturday. It was bad enough having to get my shower near the loud dorm-fridge, but when one of the pvc legs on my shower chair gave out with me in it…thank God we have the ceiling-track-lift. Let’s hope Sunday is nice and quiet…with the exception of the dorm-fridge.

Awareness Video

I started this awareness project in January, but put it on the back burner when one of the girls grew tired of hearing the sadness in some of the material I was reviewing for the video. Then I decided I wanted to get it published on Youtube by the end of ALS awareness month (yesterday). I’ve often said that others, even immediate family members, don’t know what it’s like to live with ALS; in this chair, having to rely on them for literally everything. But Cindy and the girls are slowly opening my eyes to the flip-side of the coin. No, they can never really know what it’s like being in this chair, but what they do know very well is what it’s like living with and helping care for a person with ALS, who is lucky enough to be their stepdad. They know how everything has to be about this monster that is ALS. They don’t get those impulsive late-night breakfast jaunts to Waffle House with their mom anymore. When we can get out as a family, it’s usually pretty short-lived, no more than a few hours at a time before I’m physically exhausted. Please share this video with your friends, and ask that they do the same. Thanks!

4 ALS Awareness

What follows is my response to questions about ALS to new facebook friend. Thought it would be good to share for winding up the month of ALS awareness. ALS mostly affects only the “voluntary”muscles, or those we control through the motor neurons between the brain/spinal cord and muscles. Some argue that point, saying “Then why does it affect the diaphragm?”, and my neurologist’s answer, “Because we can hold our breath”. There is also the “pseudo-bulbar affect”, possibly one of the most unknown and misunderstood affects of ALS. Also called “emotional incontinence”, it’s like a two-edged sword. First, the emotions become hyper-sensitive, like my absolutely bawling at the American Idol winner announcement, or laughing to the point of being unable to finish a punch-line. It’s like having a complete loss of emotions at the drop of a hat, a hair-trigger. The other edge is tha the emotions become inappropriate, i.e., my inability to control my laughing at my wife’s struggles during transfers to/from the wheelchair/bed/toilet, even when it causes her physical pain. As for cognition, I do believe it is affected, though so subtlely that it isn’t recorded or noticeable in research. ALS affects everyone differently, most progressing at a pace to death around three years from diagnosis. Only 10% live more than five years from diagnosis, and there are a very few who seem to plateau and no longer progress. The number of PALS (pts w/ALS) who elect to go on a trach/vent is a single digit, most likely closer to 1% than 5%. Of those, many reach the “locked-in”state, capable of moving only their eyes, or maybe a cheek muscle. In my case, I have a very slow progression, but the advance has not stopped or plateaued. My care at Duke ALS clinic has been very good, but I’ve reached the point where I seldom go, as the visits became more beneficial to their research than my longevity, and the two hour trip is exhausting to me. I encourage you to check out the ALS Therapy Development Institute at ALS-TDI, and their paradigm-shifting patientslikeme, absolutely invaluable.

New VA Family Caregiver Program for Post-9/11 Veterans

For once…and for All

I can’t make the time to get new posts written nearly as often as I’d like, but in the interest of this being ALS awareness month in the US, I’m listing a few everyday activities I once took for granted. FOR ONCE, I’d like to…. give my wife a bear-hug tell her how much I love her in my pre-ALS voice massage her aching muscles from pulling me out of my chair/off the toilet do something, anything, just me and my boys Shane and Vance open a door again take a shower alone and standing up plant a garden eat something, anything, that isn’t processed or like pudding or jello type with my fingers play a round of golf go back to work/school throw a frisbee take a hike eat a steak talk to my boys on the phone help Cindy around the house just be there for mom and dad make an omolette walk the dogs laugh/cry only when appropriate Professor Morrie Schwartz was quoted in Mitch Albom’s bestseller “Tuesdays with Morrie”as saying once he could no longer clean his own backside properly, that was his time to give up the fight. With that in mind, the last item in my list I’ve been unable to do for about the last 4 years… WIPE MY OWN BACKSIDE! And For ALL… Friendships made between ALS patients, online and otherwise, are a critical support network, in my opinion, but surviving nine years also means you lose most of your friends, often within only months. I dedicate this post to some of my friends who no longer suffer. Steve Carlin David Abell Bobby Brannigan Mike Blanton Ann Carl Harry Adams Carla Zilbersmith Jill Hollis Charley Amspoker Larry Samples

A Fighter and a chef; looking forward and looking back

I always feel I’m in a confessional when I begin these blog entries. Or standing at a makeshift podium, in front of a disheveled group of fellow bloggers, all in their pj’s. “My name is Steve…it’s been too many days since my last post”…Watched the movie “Julie &Julia”recently, a blogger’s true account of her attempt to make all 400+ recipes from Julia Childs’cookbook in a year. Really enjoyed it, can’t go wrong with Meryl Streep. While we’re on movies, I’m not one to watch a movie more than once, but last night saw “The Fighter”again with Cindy;it was just difficult to see the length to which Christian Bales went to appear as a crack addict, and conversely, Mark Wahlberg definitely brought the guns. Another great, true story. skyposter1 300x223 A Fighter and a chef;looking forward and looking back So why the long breaks between blog entries? Just living life. So glad to have gotten this year’s ALS walk behind us. It was a very cloudy, cool day, temp low 50s, a switch from the previous walks requiring floppy hats and sunscreen. Considering the weather, I think we had a great turnout, 485 walkers raised over $45000. Now comes the skydive, only 6 days away. It’s looking like just Cindy, Jack and myself jumping, but I have to remind myself, I’m a PALS! I can’t eat by mouth, I have to take 3-hour naps, and rarely get out of the house. I’m perfectly okay if the event doesn’t raise alot of money or awareness. I’ll be doing something I always wanted to do with the one I love so much! The people who care, the ones that matter, will be there if they can. Someone lauding the benefits of hospice on facebook caught my eye this morning. I’ve been discharged from hospice twice for not progressing fast enough. Much of my experience has been with home healthcare providers, but it’s very easy to confuse hospice for home healthcare, from my perspective. One of the main problems is the reliability of the agency to consistently get the same aides to the house on time. I’ve had weeks or more when I had to deal with a new, different aide every day, unfamiliar with me/my routine. You have to be prepared for the no-shows or when the agency just doesn’t have an aide to send out. I’ve been dropped in the shower, beside the toilet, had jewelry stolen, had aides show up hungover/sick or after an all-night shift. One aide got p.o.’d when I almost bit off her 2-inch nail taking a bite of toast. One agency mis-managed funds to the point the aides’paychecks bounced and the bank wouldn’t cash them. Don’t get me wrong, hospice is a blessing, but as long as you understand, it’s only intended for palliative care. If you’re not ready to accept that your days are numbered in the 300s or less, it isn’t for you. One of the best things I did to help with the many different caregivers was to document everything from emergency contacts, routine, meds, recipes and anything else that would save to save you breath from having to explain everything over and over to the diferent aides, and put it in a handy notebook. Whoever and wherever you are, may your day be filled with laughter and appreciation for the simple things in life…lest you one day lose them. Thanks for stopping by!

Awareness Project

Dear readers, I’ve had an awareness project in my head for quite some time, and have recently begun putting it together, to share on fb, my website, by email and anywhere else I think people will see it. The original idea was for a compilation of video snippets following many different PALS through the different steps of deterioration that is ALS. However, after working on it a few days, I’ve come to realize doing it with mostly pictures would be so much easier. The finished product will be intended to shock the viewer into a new level of awareness. Therefore, I’m asking for pictures of PALS and CALS that will reflect the before and after effects of ALS on your lives in a series of pictures, from the before to the pictures that are just hard to look at;the more pics in the series the better. Perfectly willing to share the project at all stages for constructive criticism. Your thoughts? Send pictures to ALSMNDAwarenesspro@gmail.com.

Oh, the Joys of ALS

Five years of doing Walks to Defeat ALS and I finally made it to a kick-off party. I use the term loosely, as it’s more like a Fundraising 101, with party favors. Just the process of getting out of the house in my condition is something non-PALS and CALS will never understand. As much as we don’t want it to be all about “us”, there’s no changing that. But that’s another story. The kick-off was actually fun, despite the chapter video locking up as soon as I began my part in it. Never did get that working, but Kelsey did a great job of ad-libbing her way through it. It was good to see the other teams on different turf, and Cindy got to meet Mary Ann, a CALS whose husband I’d known passed a few years back. When I saw her and Ariel, her daughter, enter the room, I was so glad we’d come. I immediately told Cindy, “Honey, she gets it, like nobody else here”. We may no longer have the Fayetteville ALS support group, but I feel better knowing Cindy has a new friend who has been through everything we’re experiencing. One interesting thing I learned there last night, that if every registered walker donated just $25 last year, we would’ve raised an additional $60, 000! Wow! Afterward, we popped into the library so I could get a new card which will allow me to download ebooks, audio books, music and videos/movies for free! Who doesn’t love free? I mentioned before how living with this disease, as a PALS, CALS or family member, is an exclusive group noone else understands. The tears, laughter, the pains, physical, mental, psychological…felt by all involved…the daily hurdles, seemingly insurmountable, the awkwardly comical hilarity at times, all these rolled into one hardly describe the typical day for us. When the laughter does come, it’s most often unexpected, but thank God for laughter! Case in point:leaving the library last night, I had about a 2-inch curb/dropoff I had to get over to get back to the van. Of course, there was the long way around, but where’s the fun in that?? As we approached it, I remember thinking, “Okay, not too slow, nor too fast, are my front wheels lined up?” About that time, I heard and felt the familiar metal-on-concrete sound of the chair’s ez-lock pin (bolt) between the wheels making contact where it shouldn’t. Makes hard, uneven surfaces in the chair a big no-no. As the girls begin trying to push the chair off the pin, I swear I heard the two guys in the nearby lot thinking, “Why are those three women trying to push that poor guy’s chair over?”, as the chair began teetering on the pin, wheels spinning freely. Once we realized we weren’t getting anywhere in forward, we try reverse. Here’s where the hilarity comes in. Just as the wheels grab, with the girls pushing in front, Cindy pulling in back…see where this is going? Before I knew it, I was free, but Cindy was in the dirt, laughing uncontrollably, the girls frantically asking “Momma, are you alright?”in perfect unison. Just the tip of the ALS iceberg. I’ll try and write about “What goes down, doesn’t always come up”soon. Thanks for stopping by! Here’s my “Nine minutes of fame”video for those who haven’t seen it. Careful, it did a number on Kelsey’s laptop at the kick-off. ;o)

Save the dates for Steve’s Striders!

Dear Friends, As you know, my life took a drastic change of course when I was diagnosed with ALS just a few months before my 40th birthday. Medically retired from the Air Force, I returned home to the comfort of family and friends, staggered by this true twist of fate. Known here in the states as the disease named for it’s most prominent victim, Lou Gehrig, this insidious affliction normally strikes at an average age of 55, with a prognosis of three to five years before it leaves the body completely immobile, the diaphragm too weak for breathing. Imagine being locked-in, unable to move, muscles atrophied away, but your mind fully aware;can’t talk, breathe or eat without a ventilator, feeding tube or augmentative communication equipment. I believe Lou Gehrig, the “Iron Horse”, would want to be remembered for his outstanding achievements on the baseball diamond rather than be associated with such a disease as ALS. Yet 70 years have passed since his farewell speech, and many say we’re no closer to the cure. Research has proven military veterans are 60% more likely to get it than civilians, and the people getting it seem to be getting younger every year. ALS is classified as an ‘orphan disease’, meaning not enough people have it for big pharmas to fund research and turn a profit. This puts pressure on those who suffer from it, their families and friends. In turn, also lacking is the media attention needed to make an impact like that of more familiar diseases. With the U. S. economy faltering, raising money for any cause is more difficult now than it ever was. Two upcoming opportunities to make a difference in the fight against this insidious disease are fast approaching:the 3rd annual Fayetteville NC Walk to Defeat ALS, to be held on March 26th at Festival Park downtown, and my “Leap of Faith”, a tandem skydive fundraiser to be held at Raeford Parachute Center in Raeford NC Saturday, April 9th , rain date the 10th. For me, the walk has been instrumental in not only raising funds for this worthy cause, but the hope and joy shared by those of us with ALS and our teams and supporters, many from as far back as grade school is absolutely immeasurable after weeks or months of being basically housebound. I hope you’ll consider joining and/or sponsoring me and my team, “Steve’s Striders” not only on the walk, but also for the jump. God willing, my health will be good enough to make the jump, and Cindy is just crazy enough to jump with me. I hope you will too! Follow the links if you’d like to join me and my team in making a difference in the lives of those with ALS, and complete the road to the cure. Heartfelt thanks, Steve Click here to visit my personal page. If the text above does not appear as a clickable link, you can visit the web address: http://web.alsa.org/site/TR?px=1775685&pg=personal&fr_id=7044&et=yRml7NS49g1-x973RA6-6A..&s_tafId=143469 Click here to view the team page for Steve’s Striders If the text above does not appear as a clickable link, you can visit the web address: http://web.alsa.org/site/TR?team_id=185774&pg=team&fr_id=7044&et=qlv97mYrqPH45DRG7VsDdg..&s_tafId=143469 227239

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