Watching college football while writing a blog entry about using a powerehair chair the fiirst week and testing out an iPhone app for uploading the blog entry.
First, thanks to my wife for spending time and effort on procuring a wheelchair accessiable van. Thanks to Lorraine for letting me use Waynes's chair. My chair is still being processed by insurance.
My wife had been pushing me around in a loaner chair so besides me no one could be happier than her that I can get around independently.
We got out and about in the last week traveling Boulder on Saturday for a lunch pop in on parents weekend. I got good driving test there as we parked near the weekend farmers market that was packed. First try I had to weave in the crowd and then down a narrow handicap ramp to the restaruant. Sitting low and maneuvering in a herky jerky manner brought back memories of riding in bumper cars. By the end of the afternoon I was driving smoother.
During the week we went to Denver twice for appointments and a local trip for message therapy. I think Lisa and I got the transport down pretty good this week and are pleased how well it has worked out.
OMG, ISU nipped Nebraska in Lincoln.
I do not see spell checker on this iPhone app... Oh well
-- Posted from my iPhone
Here are my suggestions for Halloween costumes this year for anybody who wants to use them.
What you'll need:
Glasses, a small distinguished facial birth mark and a dead fish to carry. See photo . Hold up fish next to face when saying "trick or treat".
You can go the extra step and eat a lot of garlic to smell like him or at least smell like most TV food experts.
What you'll need:
A hair piece, a spiffy suit and his new book "The Governor" to peddle.
For kids, a blend of Blagojevich and Harry potter would be cute. For example, Harry potter is the Governor of Illinois and the untruths rocking a nation.
A Rice Crispy Treat
Simply wrap your body in the sticky crispy mixture to form a square treat.
I don't know what a Degrassi is but a Degrassi sounds spooky. So dress up in whatever u fancy, If people can't figure out what you are let them know you are a Degrassi.
A KFC Grilled Chicken lover
All u need is a bucket of KFC and then deck yourself out as one those carnivorous beings from the KFC commercials that wonder around in a parade of people carrying a bucket of chicken.
If I see anyone with a bucket chicken the next few weeks I going to assume they are in costume for a Halloween party and not a really a grilled chicken lover.
Spent the afternoon with my wife practicing driving a power wheel chair up a ramp into our new wheelchair accessible van. It does take practice. I imagine Darth Vader did same thing before he got his black body suit.
I am now becoming a fan of skype and video calls. Great tool to connect with people. I have chatted with uncles, siblings parents, nieces and even with my daughter at college.
I also chatted with another ALS patient in Iowa. I can't talk but use the IM features to text messages
Lastly I chatted with an old family friend living in Watertown SD who I probably not seen since college. Check out photos.
I am Dave.larue on skype, look for me.
Lisa and I are participating again in this years ALS Association Rocky Mountain Chapter's Walk to Defeat ALS on September 12th and would like you to support our team, Spirit of the Springs, with a donation. Last year our team raised over $16,000, the most of any team on the walk.
Dang I thought I would be posting a blog entry more often (but I do tweet a lot). I would like to think its cause I am so busy. To some extent I am but on the other hand I just don't get as much done as I used to. I am moving slower and now typing with only my right thumb most the time using my ipone as a remote mouse and keyboard.
I did get a wheel chair as I mentioned in last update and have used it a couple times, the last time being at my daughter's college orientation where my wife wheeled me around between buildings. I have to admit it worked well but I was a bit depressed at first.
I was also fitted for a foot drop brace at the ALSi Clinic in Denver. I have been using it and I am quite excited about using it now because I have a more normal walking gate. Probably should have got it sooner but I didn't even know they existed.
I have been working on adding more functionality to my website to allow me to collect ALSi stories and information. It's more of thing to do for fun.
Been spending time following healthcare changes and calling my senators and rep. Its an important issue as any and a great opportunity to fix some problems. It's refreshing to see the two parties work on something that will help everyone.
Here is excellent letter posted on the PatientsLikeMe website about how ALS can affect your coverage.
Update: july 16
i have trouble typing and i am using my iphone with an app called airmouse to control the pc, i hold phone right hand and type with my thumb and move mouse with thumb with the i phone touch screen. i think it was 3 bucks and works over the wireless network
i made this post using it.
Update: I am now using I-phone with the data/text plan ($50 plus taxes a month). I-phone has a slightly better speaker IMO. I definitely like getting text, emails where ever I am.
I was eager to try it out and so bought it from the Apple store. The itouch is significantly smaller than the lightwriter I currently carry around for voice augmentation.
I will be attending the Rockies game on July 4th with my family and friends. Lou Gehrig's original farewell speech will be read at the game. Its the 70th anniversary of his speech.
The campaign, called "4♦ALS Awareness," will culminate with Gehrig's words being read at all Major League ballparks where games are played this coming July 4, during the seventh-inning stretch.
Nice story about it here New York Times article.
Shopping at Costco
Went shopping at Costco with Mom. I really feel the oversized items there when lifting. It's a bit of a workout for me.
The ALSA loaned us a collapsible wheel chair. I can still walk but if we any long walks there chair will make it easier. I am not a fast walker anymore.
I tried this at mom's recently, not bad.
Eating was an worry since it was my real first trip away from home since getting PEG .
It was a seven hour drive to Moab so I had my lunch on the road. I enjoyed my can of easily packed Issource and water . I ate using a syringe as seen in photo below on the lunch breaks. The rest of the group snarfed delicious sandwiches.
I think I surprised myself by how well I did at feeding. My first attempt to feed myself alone was while I waiting for the group who went on a short hike. I almost completed the meal without a drop or spill until Mother Nature interfered. I was rinsing the syringe in a small cup of water when a hummingbird dived at the cup and I pulled the cup away quickly and spilled the dirty water on my shorts and shirts. So close. No worries anymore.
Did some work with Iphone and gps apps in prep for my trip to Moab. Thought it would be fun for my family to track me.
So far i tried loopt, gps-tracker, gps-motion.
Loopt is cool if you have friends/family using it. U can checkout where your friends are.
loopt: my journal from a couple days. Yes my points are lame but you get the idea.
gps-tracker - sample point it broadcasts my location every 15 seconds, unfortunately it will run down battery pretty fast and doesnt run in the background on iphone. But none of the other apps do either.
Motionx - GPS just started using and can share on FB and Twitter. Just not sure if i can embed in blog.
Here is a sample GPS journal of 7th grade science teacher hiking Appalachin trail. Don't know it was constructed.
Throughout my diagnosis process the neurologist spoke to me like I had a complete understanding of the nervous system.
Added a new page to log inspiring people i found on internet and through twitter.