White-out ALS!: Health and wellness

Sponge-worthy?

Wed, 16 Jan 2008 23:59:40 GMT

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"!

ALS Newsletter

Sat, 20 Oct 2007 17:41:38 GMT

ALS NEWSLETTER ISSUE 4 — October 2007

WHAT'S NEW AT PATIENTSLIKEME

The buzz about PatientsLikeMe is growing! In August, Business 2.0 magazine and CNN.com recognized PatientsLikeMe as one of 15 companies that will change the world. To be selected, a company must have "the potential to rewrite the rules of existing industries or open up entirely new markets."

We couldn't agree with this assessment more; after all, we began with that exact mission. But what's amazing is that we're already starting to achieve it. Thanks to the participation of thousands of patients like you, we're well on our way to creating "a fast bypass around restrictive privacy rules that tie scientists in red tape."

As part of the implementation of this sweeping objective, we're pleased to announce the upcoming launch of our HIV community, which we feel is an important addition to our coverage of life-changing diseases. If you know anyone affected by HIV, they can sign up here to be notified when the PatientsLikeMe HIV community is available.

GETTING TO KNOW YOUR PALS

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 Steve , a two-star member from Fayetteville, North Carolina.

What are your interests and hobbies?

Since my diagnosis, I enjoy helping others newly diagnosed and getting them on the right track. Then there's the technological side; I'm always scouring the net for the next gizmo to help me overcome the challenge of life with ALS and keeping that glass half full. Being from Fayetteville, North Carolina, it's hard not to mention the military, ACC basketball and summer trips to the beach, the mountains and Carowinds. But ALS certainly puts its own twist into all aspects of what we previously called life.
For instance, my love for getting out and hitting that little white golf ball around has transformed into just being able to watch Tiger win another tournament. Other interests have been gardening, racquetball, tennis, beach volleyball, tinkering with the cars and going to any live sports event or concert. I'm also taking full advantage of the free movie admittance at the local theaters weekly.

What accomplishments are you most proud of?

My time in the US Air Force has been both the most rewarding and selfless aspect of my life, but I feel I gained so much from those 21 years that I came away from it with the upper hand, even though the reason I had to leave was medical retirement thanks to "Uncle Lou!" Other than that, I'm proud that I completed the "bible-in-a-year" reading, sung on-stage with Karen Carpenter, and that I'm a melanoma survivor.

What are your top three motivators in life and why?

I think the first would have to be what my boys, Shane and Vance, get from seeing how I deal with the challenge that is living with ALS. Second, I owe my life to Jesus Christ, who pulled me from the ruins of an immoral, mortal existence. Thirdly, to learn as much as I can in the time I have left, and to transform that into something I can give back.

What other PatientsLikeMe patients have you enjoyed getting to know and why?

This is the hard one, as I've taken something from each one of them and made it a part of me. I was so sad to hear of the passing of David Abell, who was so instrumental in moderating the Living with ALS Yahoo! Group. He was a mentor of sorts, and my wife has had several very educational conversations with his dad, Jerry.

Specific to PatientsLikeMe, BobbyB is about as reliable as they come, but then there's the twisted humor of Super Dave, always controversial, and others like carylnjay, my overseas penpal Petra, SheilaT, an author, and just anyone who teaches me a thing or two or makes me smile, and those are many!

THIS MONTH'S SITE IMPROVEMENTS

We are constantly working to improve our site. In this section, we'll keep you up-to-date on new tools and features designed to make your PatientsLikeMe experience even better.

Here is our top functionality enhancement for October:

We've retooled the global site navigation bar to make it easier and faster to access the most popular areas of our site. For example, you can now reach the Forum as well as our Symptom and Treatment databases from anywhere on the site.

If you have suggestions for other site improvements, tell us!

YOUR PROFILE STATISTICS

Help other patients by updating your profile today.

Do you know other people with ALS? Invite them to view your profile so they can see what PatientsLikeMe is all about. Every new patient helps to strengthen and grow our community.

About Us | Report a Problem | Privacy | User Agreement

Duck & the Devil

Mon, 08 Oct 2007 13:33:07 GMT

There was a little boy visiting his grandparents on their farm. He was given a slingshot to play with out in the woods. He practiced in the woods; but he could never hit the target. Getting a little discouraged, he headed back for dinner.
As he was walking back he saw Grandma's pet duck. Just out of impulse, he let the slingshot fly, hit the duck square in the head and killed it. He was shocked and grieved! In a panic, he hid the dead duck in the wood pile only to see his sister watching! Sally had seen it all but she said nothing. After lunch the next day Grandma said, "Sally, let's wash the dishes." But Sally said, "Grandma, Johnny told me he wanted to help in the kitchen." Then she whispered to him, "Remember the duck?" So Johnny did the dishes. Later that day, Grandpa asked if the children wanted to go fishing and Grandma said, "I'm sorry but I need Sally to help make supper."

Sally just smiled and said, "Well that's all right because Johnny told me he wanted to help" She whispered again, "Remember the duck?" So Sally went fishing and Johnny stayed to help.

After several days of Johnny doing both his chores and Sally's,he finally couldn't stand it any longer.

He came to Grandma and confessed that he had killed the duck. Grandma knelt down, gave him a hug and said, "Sweetheart, I know. You see, I was standing at the window and I saw the whole thing, but because I love you, I forgave you. I was just wondering how long you would let Sally make a slave of you."

Thought for the day and every day thereafter?

Whatever is in your past, whatever you have done... And the devil keeps throwing it up in your face (lying, cheating, debt, fear, bad habits, hatred, anger, bitterness, etc.)...whatever it is...You need to know that God was standing at the window and He saw the whole thing. He has seen your whole life. He wants you to know that He loves you and that you are forgiven.

He's just wondering how long you will let the devil make a slave of you.

The great thing about God is that when you ask for
Forgiveness. He not only forgives you, but He forgets. It is by God's grace and mercy that we are saved.

Go ahead and make the difference in someone's life
Today. Share this with a friend and always remember: God is at the window! When Jesus died on the cross; he was thinking of you!

ALS Functional Rating Scale (FRS) update

Fri, 24 Aug 2007 16:29:17 GMT

Here's my latest, along with some questions I had about this method of measuring ALS patients progression, at the end. The Functional Rating Scale (FRS) score helps pals keep track of their overall condition by measuring symptoms in all parts of your body: head, chest, arms, and legs.

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.
Next, 4, does "able to hold pen but... include if the pen has to be placed there by caregiver?
15, I use an on-screen keyboard, plus dasher, with a normal wireless mouse in the wrong hand. So I still use a mouse, but cannot utilize a normal keyboard at all. Does my use of the mouse qualify my answer, can only activate one key...?
12, I have to elevate my head not due to shortness of breath, but because I wake with headaches, I believe due to hypopnea, shallow breathing due to a weakening diaphram, so I do elevate, but not due to shortness of breath, unless that and shallow breathing are the same?

Swhite, "Cyber Beggar"

Sat, 18 Aug 2007 19:57:28 GMT

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...

My personal walk page

Steve's Striders" walk team page

For the sake of an entry...

Thu, 26 Jul 2007 16:21:49 GMT

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!

Interesting perspective

Sun, 17 Jun 2007 16:04:55 GMT

I 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."