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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.
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