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January 16 Sponge-worthy? Current mood: Disgusted! by social networking websites that suck people into answering such questions!! We're all so busy "socializing" without even leaving the house; do my friends care what mood I'm in this creative instant? By the time they read it, the mood will have passed! What I'm listening to right now: cpu, blow dryer and Garth Brooks, what a combination. Now Brad Paisley, "I'm Gonna Miss Her"... I love this song, ... if anyone cares to know! So I've done alot of thinking lately, about quality of life. Being diagnosed with ALS has led me to ponder some of the more obvious end-of-life issues, i.e. "The Five People You Meet in Heaven", "Live Like You Were Dying", "The Bucket List", "Tuesdays with Morrie", like I said, obvious, right? [insert smooth transition] So I'm reminded of a Seinfeld episode, the one where Elaine discovers that the birth-control "sponge", her b/c of choice, has been discontinued, and the stores are all out. Suddenly, every potential beau she meets, she finds herself rating them by whether or not they're "sponge-worthy". I know you true Seinfeld fans are saying "Hey, I remember that one!", almost worthy of soup-nazi recognition! What I'm getting at is this: it isn't like you see in the movies, or hear in a song, or read in a book, at least not for me for the most part. I'm not seeing the world, jumping from planes, and I have serious doubt there's a bull somewhere out there named "Fu-manchu". So I find myself looking for quality, never taking tomorrow for granted. A good portion of my days are now spent online, in search of who knows what. Last night, I ran across a web site that really is amazing, amidst the towering heaps of trash to be found there. The site is TED. Technology, Entertainment, Design. Check it out, I think it's quite "sponge-worthy"! October 20 ALS Newsletter
October 08 Duck & the Devil
September 19 Cool Links!I just want to take a moment to direct you, dear reader, to an interesting couple of links.
The first is a site apparently created by the lead singer of the group "Five for Fighting", John Ondrasik. The site is www.whatkindofworlddoyouwant.com. Videos are posted by anyone trying to raise funds for a charity, and each time their video is played, a dollar amount is awarded to their charity. Here's a description from the site:
whatkindofWORLDdoyouwant.com is the first video community that gives back!
We are all connected to one another through our actions. Each person has the ability to make a difference. This is one of the messages of the Five For Fighting video "World." Tell the world what kind of world you want and raise money for charity by making and uploading a video of yourself, your friends or your family--whomever and whatever--answering the question, "What Kind Of World Do You Want?" Or, you can raise money for charities that John Ondrasik of Five For Fighting has personally selected. Watch any clip on this site and money will go to the charity listed with that video. Tell the world what kind of world you want and raise money for charity by making and uploading a video of yourself, your friends or your family--whomever and whatever--answering the question, "What Kind Of World Do You Want?" How cool is that, knowing you're contributing to the cause by watching a video?! I'm still trying to figure out how to get my computer to log on and watch the "Augie's Quest" video over and over when I'm away! Anyone?... Beuller??
The next link is something I ran across looking for another way to raise money for ALS research, it's ibakesale.com. I know, sounds a little too Betty Crocker, right? Well, as it turns out, the site is definitely on the up and up, as the Catfish Hunter Chapter has already received a check in the mail since I turned them on to the site! It's basically a cash-rewards program where you earn money simply by using the links on the site to take you to your favorite on-line stores. There are hundreds of stores, so it's a virtual shopping smorgasbord! Okay, all you baby-boomers, where would you be without your shopping and your videos (think back to the original MTV, when it really showed good music videos!)
The ALS walk in Raleigh back on the 8th was great! We doubled the team's fundraising goal, but it sure was hot for September, 85 when we started, and every bit of 97 in the end. Special thanks go out to a couple all-star team members: Kathleen Gordon of the Fayetteville Observer was the top fundraiser, bringing in $665.00 at last check, and the other is my awesome Air Force friend, Dolly Witt, who brought in $550! Also, a special thanks to my very good friends, Mel and Tyna Wallen-Murray, for their getting me to the walk on-time, along with Spencer, Hailey Sue, Craig (crazycwguy), Megan and Donovan!! You are all awesome, amazing people!! My heart thanks you, THANK YOU ALL!!! Now GET SHOPPING!! August 24 ALS Functional Rating Scale (FRS) update
Have you noticed any changes in your speech? no change noticeable speech difference speech has changed;asked often to repeat words or phrases speech has changed; sometimes need the use of alternative communication methods (i.e. computer, writing pad, letter board or eye chart) unable to communicate verbally Have you noticed any changes (increases) in the amount of saliva in your mouth (regardless of any medication use)? no change slight but definite excess of saliva with or without night time drooling moderate amounts of excessive saliva with or without minimal day time drooling marked amounts of excessive saliva with some daytime drooling marked excessive saliva with marked drooling requiring a constant tissue or handkerchief Have there been any changes in your ability to swallow? no changes (all foods and liquids) some changes in swallowing or occasional choking episodes unable to eat all consistencies of food and have modified the consistency of foods eaten use a feeding tube (PEG) to supplement what is eaten by mouth do not eat anything by mouth and receive all nutrition through a feeding tube (PEG) Has your handwriting changed? Please choose the best answer that describes your handwriting with your dominant (usual) hand without a cuff or brace. no changes slower and/or sloppier but all the words are legible not all words are legible able to hold a pen but unable to write unable to hold a pen The following question refers to your ability to cut foods and handle utensils (feed yourself) compared to before you had symptoms of ALS. no change somewhat slow and clumsy (or different than before) but no assistance or adaptive equipment sometimes need help with cutting more difficult foods food must be cut by someone else but can feed slowly without assistance need to be fed using a feeding tube (PEG or RIG) If you have a feeding tube, how well are you able to use it? I don't have a feeding tube use PEG without assistance or difficulty use PEG without assistance however may be slow and /or clumsy. require assistance with closures and fasteners provide minimal assistance to caregiver unable to perform any of the manipulations Has your ability to dress and perform self-care activities (i.e. bathing, teeth brushing, shaving, combing your hair, other hygienic activities) changed? no change perform self-care activities without assistance but with increased effort or decreased efficiency require intermittent assistance or use different methods (i.e. sit down to get dressed, fasten buttons with a fastener or your non-dominant hand) require daily assistance do not perform self-care activities and completely dependent on caregiver Has your ability to turn in bed and adjust the bed clothes (i.e. cover yourself with the sheet or blanket) changed? no change can turn in bed and adjust the bed clothes without assistance but it is slower or more clumsy can turn in bed or adjust the bedclothes without assistance but with great difficulty can initiate turning in bed or adjusting the bed clothes but require assistance to complete the task helpless in bed Has your ability to walk changed? no change walking has changed but do not require any assistance or devices (i.e. foot brace, cane, walker) require assistance to walk (i.e. cane, walker, foot brace or hand held assistance) can move legs or stand up but unable to walk from room to room cannot walk or move my legs Has your ability to climb stairs changed? no change slower unsteady and/or more fatigued require assistance (i.e. using the handrail, cane or person) cannot climb stairs Do you experience shortness of breath or have difficulty breathing? no change shortness of breath only with walking shortness of breath with minimal exertion (i.e. talking, eating, bathing or dressing) shortness of breath at rest while either sitting or lying down significant shortness of breath (all of the time) and using (or considering) mechanical ventilation Do you experience shortness of breath or have difficulty breathing while lying down on your back? no change occasional shortness of breath while lying on back but don't routinely use more that two (2) pillows to sleep shortness of breath while lying on back and require more than two pillows (or an equivalent) to sleep can only sleep sitting up due to shortness of breath require the use of respiratory (breathing) support (BiPAP® or invasive ventilation via tracheostomy) to sleep and do not sleep without it Do you require respiratory (breathing) support? no respiratory support intermittent use of BiPAP® continuous use of BiPAP® at night continuous use of BiPAP® at night and during the day (nearly 24 hours per day) mechanical ventilation by intubation or tracheostomy How do you use your ventilator? I don't use a ventilator use a ventilator only when sleeping use a ventilator when sleeping and occasionally during the day use a ventilator when sleeping and eight hours or less during the day use a ventilator full time Compared to the time before you had symptoms of ALS, has your ability to use your fingers been affected when using the keys of a computer, speech device, remote control, or environmental controls? no change; able to type or press buttons quickly with any finger can press buttons or type but at a reduced rate can only press some buttons or type very slowly can only activate one key or switch at a time am unable to activate any key or switch with fingers To what extent have there been changes in your ability to move your head? no change; can move head in all directions from a vertical position without head support can move head in all directions from a vertical position with head support can move head in all directions from a reclined or tilted back position with head support, and can nod or tilt head can move head from left-to-right from a reclined or tilted back position with head support but have a very limited range of motion cannot move head To what extent have there been changes in your ability to show expression in your face? no change self or others have noticed changes in normal facial expression expressions understood by family or close friends but sometimes ambiguous to others very limited motion; family or close friends sometimes misinterpret emotional state unable to communicate emotions through facial expressions Has there been any change in your ability to travel outside of the house? no change slight but noticeable difference in driving or using vehicles require modified vehicle to drive, OR require assistance getting in and out of vehicle passenger in a wheelchair vehicle unable to travel outside of the house How do you transfer in and out of bed? no change get in and out of bed with some assistance or using bed rails get in and out of bed using a transfer board get in and out of bed using a lift totally bedbound How are you able to get around inside your home? no change a walker, cane(s), crutches or rails a manual or power wheelchair without help a wheelchair operated by someone else totally bed bound Quality-of-Life in ALS In addition to knowing about your physical functioning, we are also thinking about developing a survey that measures quality of life in ALS. Please answer the following questions. How active are you in participating in leisure activities, social events, or hobbies? no change; I am able to regularly initiate and plan social activities such as dinner with friends, going out to events, etc I actively participate in social activities such as dinner with friends, going out to events, etc, planned by others I take part in social activities such as dinner with friends, going out to events, etc, planned by others, but I participate less actively than before I am a passive observer in social activities; I am present but I am not actively contributing to the activity I am not able to do much of anything How much control do you have in managing your own care? (such as what doctors you see and when, what food and supplements you take, the hiring of caregivers, your schedule, etc) I directly control all elements of my care I direct most elements of my care I direct many elements of my care I direct few elements of my care I have almost no ability to direct my care Do you currently use a computer? no changes; I use a normal keyboard and mouse without impairment, OR I didn't use a computer before symptoms I use a normal keyboard and mouse with some difficulty I use an onscreen keyboard and a device to point to characters I use a scanning keyboard or eye gaze system I can't use the computer
Specifically, in 3, on swallowing. I chose "unable to eat all consistencies..., but the more accurate answer would be "unable to eat all consistencies... PLUS... use a feeding tube for medications and hydration. This is because I can still easily handle Ensure by mouth. August 18 Swhite, "Cyber Beggar"Just around the corner, on September 8th, is the Triangle (Raleigh, Durham, Chapel Hill) "Walk to D'feet ALS" on the NC State University campus, sponsored by the "ALS Association's "Catfish Chapter" there in Raleigh. Last year's triangle walk was my first as a pals (patient with ALS). I was enthused about it, had a walk team of 40+ friends, family, and even some the Ammo troops from Pope, a few familiar, some I had never met. The weather was perfect, I was overwhelmed emotionally, and we managed to raise a good $1200 or so, not bad for a first-year team! I went on to register for the Spring walk in Wilmington, which we did this past April, which also turned out pretty great, even though my brother, Brad, had just been released from the hospital there the day prior, following over two months recovery from his traumatic brain injury received in an accident. Wrong place, wrong time. That's what happens when someone else blows through a stop sign doing 50 mph! The innocent suffer. He's still recovering, and we're still praying for it to be full recovery. Needless to say, Brad was unable to participate in that walk, but at least we were able to see him get out of that hospital the day prior. The point I'm trying to arrive at is this: here we are 21 days until this year's triangle walk, and I haven't lifted a finger (figuratively) toward recruiting team members, soliciting (ugly word) donations etc. Until now, I guess. There are many new avenues opening for fundraising over the internet, which I'm testing the waters on, but I hope you'll consider joining me for the triangle walk Sep. 8th. Whether you donate funds or simply part of your Saturday, ALS isn't going away without the help from people just like you. Hope to see you there... July 26 For the sake of an entry...I really feel I've lost touch with this site lately, no new entries in quite a while. So many things I think of writing about, and nowhere to start. A while back, I wrote about how I had created a MySpace profile for the sole reason of keeping track of my two boys, Shane - 17, and Vance - 16. Well, that's not entirely possible when they make their profiles private. Anyway, while I continued plugging away at the Windows Live Space, posting updates when I could etc. Lately, I've been suprised by the ever-increasing number of PALS, people with ALS, on MySpace.com. So I felt I was out of touch with possibly a good portion of the pals online. The younger crowd, anyway. So while I maintain the attitude that there's probably alot more cyber-trash than decency on MySpace, I did a little more with the profile, and created what I think is a pretty cool page. Those of you reading this on Windows Live Spaces can find it at www.myspace.com/steveayse. That being said, I'll most likely post my blog entries to both sites, for maximum reach. For the near future, anyway. For a different, young, refreshing spin on having ALS, check out Kimbo-in-Limbo's site, the link is in my friends list. Speaking of friends, I was blessed to have Judy come to read to me again Monday, and she brought a warm peach cobbler along, what an amazing lady. She's a wealth of knowledge of many subjects, especially the bible. Last night, I received a suprising call from a friend from waaaay back. We're talking wonder years here, folks. Another friendship that
re-emerged as a result of the newspaper story. She lives in Atlanta, where she has worked for the television industry
for the last twenty or so years, working her way up the ladder, so wisely holding off getting married until fairly
recently. She was in town, and I was lucky enough that she stopped by for a visit. Rekindled many old memories. After
twenty-five years or so...wow! Well, today she emailed to say she had thought about asking ‘the network’ to do a story
on ALS. Let me just go ahead and say that I had thought about it, but I hardly felt I was in a position to ask for such a thing. There's been plenty of PALS generating letters and emails to the likes of Oprah Winfrey and other big-hearted, notable celebrities, looking for that magic pumpkin endorsement, opening American's eyes to the brutality of ALS, hopefully, of course, leading to whatever it takes to find the cure I know is out there! All that being said, I'll leave her identity confidential for now, and hope, and pray for the best!
For further down the road, I'm feeling the necessity to buy my own net real estate, give it a name, and I won't have to worry about the need to roll with the changes made to the popular social networking sites, or having to update more than one site. I'm working on an outline, and the site will most likely be multi-faceted, with different pages devoted to the different aspects of my life. ALS, USAF Ammo, spirituality, photos, and whatever else I feel the need for. I think it's important that people with ALS like myself have something to do, to look forward to each day, prompting us from the bed. This should be plenty to keep me busy.
Terminex should be here any time now. We've spotted termites out front and need to nip this in the bud, and fast! Tonight is movie night, so I need to pick something out so I'll have an answer when Paul, my good friend and movie buddy calls. Enough for now, c-ya! July 09 The CruiseI've always leaned to the right for my intentions for this blog, getting the wheat in print, leaving out the chaff, hopefully helping others along their journey. However, A + B does not always equal C (Oh well!) Ayse and I were very blessed to be able to go on a cruise last week, despite the complications presented by "Uncle" Lou Gehrig. Even though I'm not on a ventilator, my condition presented plenty of obstacles for an enjoyable trip. My heart really goes out to other PALS and others with different ailments that end up on a vent and are still able to travel. That being said, if I haven't lost you yet, here's a different spin on the blog: in the interest of a more complete recovery from the journey, for now, I hope you'll enjoy this recount of the cruise, in "100 words or less"! (but who's counting?!) Royal Caribbean Mariner of the Seas, July 1-8 2007 In 100 Words anxious, long drive, thunderstorm, frazzled, applebees, Ormond, Daytona beach, port canaveral, quick check-in, free parking, accessible cabin 6304, buffet lunch, deck 11, dinner seating frustration, royal promenade, savoy theater, cruise director becky, checkers, captain johnny, labadee, tender, beach wheelchair, labaducee, zip-line, ocho rios, pushy craft vendors, taxis, taj mahal, jewelry, diamonds, tanzanite, ammonite?, blind, crippled, port security, Cayman Island, internet time, francisco, rashim, ahmet, omer, kaya, david, footrest, cozumel, new pier, 63 hours, flat tire, souvineer shops, t-shirts, one-tequila, macaws, long walk, bumpy ride, heat, pictures, nachos salsa and quesadillas, karaoke, ice show, dune buggies, iguana, bluest water, poolside, peek-a-boo bridge, seattle's best... That's about it. I'll keep the details locked away, as each word is a different story. But if interested, just “say the word"... June 17 Interesting perspectiveI found this quote, from Dr. Paul Wicks, of the ALS Therapy Development Institute, to be very interesting. While most consider ALS a disease, it's really more of a label, meaning it doesn't fit any other disease criteria. Rule everything else out, and it's ALS!
".....there are a wide variety of conditions that can mimic ALS. However I'd say what I've always said, that a diagnosis is a clinical one done by an experienced neurologist and that there is no green flag that rules ALS in, just several that rule it out." Weekend happeningsBeautiful weekend so far! Cool enough for early spring, but it's not supposed to last long. Took it easy at home Friday night. Took the whole day to get over the 0645 show-time for lab bloodwork at the VA hospital that morning. We were 17th in line, but still managed to get out in under an hour. Came home to find the power out, reason unknown. It was back on by 1145, just when I heard the bed calling for an early nap; dad's recliner didn't sleep well Thursday night.
Today a great friend from way back came by for a visit; he had seen my Observer story for ALS awareness month, fortunately. Chris and I go back to those wonder years, and hadn't seen each other since high school. Can't tell you how great it was to see and talk, catch-up, with him, meet his family etc. Really looking forward to seeing him more. Life is too short not to reach out, to stay in touch.
Mom and Dad brought Brad over so we could get out together. We went down to the Airborne and Special Ops museum downtown. Anyone that knows downtown Fayetteville NC of the 1970's and early 80's will remember it as drunken GI's, strip joints, stabbings, drugs, you name it. Not long after I left for the Air Force, the downtown revitalization effort and cleanup began. At the main gateway intersection into downtown, at Robeson and Hay Streets, stands the museum. That museum is architectually inspiring inside and out. The blood, sweat and tears of the US Army Airborne and Special Operations heroes are remarkably displayed in the many pictures, exhibits, videos, etc. One of the many volunteers is dressed smartly in his WW-II era tan fatigues, a Sergeant Major, his face telling a silent tale of better years gone by. I believe this was my fifth visit, and I see it differently and enjoy it more every time. I feel the museum marks the beginning of a new, modern era for downtown Fayetteville. After the museum, we went down Hay St., stopping at Pierro's for a late lunch/early dinner. Brad had gotten tired and his eyes were bothering him, I guess from the museum's low lighting. But I know he really enjoyed the meal, having put away his salad, chicken parmasan, spaghetti and part of my hot wings and bread sticks! No problems swallowing there! We sat outside in the shade; there was a light breeze, and we were entertained by the constantly passing traffic and people show. Aaaah! I was glad to be able to pick up the tab, as I thoroughly enjoyed that meal with three of the most important people I have on the planet, and felt empowered by my ability to treat them. Next we went to the local home improvement giant to look for a hand-held showerhead for the other full bath downstairs, where we moved my bath lift seat. I purchased this lift seat off eBay. It sits in the tub and lowers you down into the water on rechargeable battery power, and raises you back up after the bath. Also has a floating remote. I had tried it once in the master bath, but because it's a garden tub it was too tricky getting in and out, and it was hard on my caregiver's back, having to constantly bend over to reach me. Should be much easier in the standard-size tub, and no more worries about falling in the shower again.
No plans for today, too hot to do anything outside mid-day. Starting the morning off with Pastor John Hagee of Cornerstone Church in San Antonio. Wherever you are at this moment, I hope you're exactly where you want to be... God bless! June 13 New blog address!Well I really don't know where the days are going. Is my life so drab that the days are all running together un-noticed? Or is my life that good?! Ayse made a comment on one of our evening walks recently, stating before we know it, my brother Derek will be sixty! Good Lord, I hope he doesn't see this. I don't think the next eight years will fly by that fast!
Before I get too long-winded, I'd like to let you know about a change: I'm moving this blog over to my hotmail and Yahoo! user name, swhite.geo. The geo is from an old, old geocities online community, back before blog became a common household name! Anyone remember geocities? The reason is when I started the windows Live Spaces site, I somehow managed to do it under Ayse's user name. Well, times have changed, and I just want to realign things a bit. So, be sure and add www.swhite.geo.spaces.live.com to your favorites for future use. I said before that this site will be more focused on my daily battle with ALS, and that still holds true, but I don't dare say I'll try to write an entry every day, that's just not possible. I'll try to stick with what's important, and maybe throw in something funny from email as filler, to help when I just don't have the time or energy. Speaking of email, I'm also trying to get away from our joint earthlink account, and use my yahoo and hotmail accounts. Still haven't decided which I'll stick with, different advantages to both. Something else I'd like to say about email: I'm working on a disclaimer for my signature block, something like this:
This email is certified by the originator to be free of any solicition, boycott, scam, spam or petition . You will not be asked to forward to anyone in exchange for any reward, profit, healing, salvation or glorification correlating to how many it's forwarded to, or how quickly. Any other ideas for it?
I read something recently about the "suck factor" associated with pc's and the internet. Not to worry, this site is rated "PG", for Pretty Good". Anyway, it had to do with how easy it is to be sidetracked by all the cyber trash out there. Don't get me wrong, I think everyone should have a good belly laugh at least once a day, but as soon as you forget the reason you got on the net in the first place, you've been sucked in! I do have some great news: Dad will be going down to pick Brad up this Thursday or Friday, and he'll be staying until about Tuesday. Will probably stay with mom and dad for at least the first night. Then hopefully he can be here with us for a day or two. I'm sure mom will get Christina here to see him as well. However, sometimes the good has to come with bad... Apparently, Brad saw an eye doctor last week, who told him and Debbie that he is now considered legally blind, at least in the left eye, on the impact side. We knew he may have problems with it, but just didn't expect this severity. That's all I know for now. I'm sure Debbie will enjoy the break, as she's been by his side since the accident. Thanks for your consistent prayers on his behalf!
Enough for now, more later............... |
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At PatientsLikeMe, we believe in getting to know the person, not just the "patient." That's why we've decided to interview a PALS each month to find out more about how he or she approaches life. This month we are pleased to feature 
