This whole FeedBlitz thing is 100% new and foreign to me, so please bear with me as I get it all set and adjusted, there may be doubles of E-Mail’s coming into your box, and some may not come at their proper time. (1 hour or less from post time)

However, I am working to make this all work smoothly and this is the first large transition my site has had to make in a long time!

Blog subscription’s service is DOWN at this time. I am working with FeedBlitz to fix this issue on my account. For the time being no one can create a new subscription or delete their current one! I hope to get this fixed quickly tomorrow or Tuesday!

First things first, the blog failure has been cleared, you should receive this post within one hour after I post it! I have switched all of you over to a new system known as FeedBlitz, it works very similar to the old FeedBurner system that I am going to miss using. However this new system is a bit more complex at my end. But it is definitely packed with more features! It also has a lot of simple features for you guys. It has things like the ability to subscribe via our original E-Mail system, a brand spankin’ new Skype system, AOL Instant Messenger, Yahoo Instant Messenger, Twitter, and MSN Instant Messenger. This system will hopefully work much better for us.

I also went around the site and changed anything pointing to FeedBurner to point to FeedBlitz, Please contact me using the Contact Me page if there are any I seem to have missed!

I have also changed over the E-Mailing List subscription page, it is no where near as good looking as the FeedBurner box but will have to work!

Note the new PatientsLikeMe box is now available on all pages!

If you see any unusual differences in the sidebar on any page please contact me using the Contact Me page.

Houston we have a problem, it has come to my attention today that our FeedBurner E-Mail system has gone down hard. It has been down for quite a few days now and most of you may not have noticed the outage, I sure have not. I have contacted technical support however nothing will likely be done till Monday, until the feed is fixed I will be manually sending the news updates via E-Mail. I hope to have this failure fixed soon.

Oh and, Happy Thanksgiving.

We took my laptop to Apple today to get it repaired and then went to Target.

At Target we had some fun. Mom rode one of the scooters there, it was quite funny us racing down the aisles. She was really good for being a first time driver on one of those. Though I won easy being the scooter only went maybe 3.5 miles per hour and my chair tops out around 6. She does not usually use the scooters but this was not our regular Target that’s smaller. This was one of those huge Target Greatlands stores with the grocery store inside of it. Too bad I couldn’t get a picture of us together haha, would be kind of a blind leading the blind picture.

About 30 minutes Later Apple calls and our fun comes crashing down. They are calling to say they won’t repair it under warranty due to “liquid damage” me and mom were furious. This computer is an alternative augmentative communication device. I cannot write and nor do I communicate any other way than verbally without this laptop. I even sometimes use it when I have selective mutism attacks to speak for me. So I medically need this laptop. And apparently Apple does not care. So Apple corporate is going to hear from me. We went to the store and I looked at the damage and it appears to possibly be a medication or feeding formula, it can’t be anything else since its a white color. We said close it up and we will take it somewhere else. That somewhere else is my overbed hospital table, yep you heard that right, I am going to fix it myself. I have fixed many laptops before including my own. The thing is you have to be “Certified” Well how does apple verify that I opened it and it wasn’t my friend who lives in Chicago who has an active certification did it. They can’t thus they just have to accept it.

I got the parts on eBay.com for $141 which is not bad compared to what apple would have charged me and then labor!

If you can donate please do, will help us absorb the cost of the parts!

Oh and HAPPY TURKEY DAY tomorrow! I will take some pictures.

We are taking in my laptop for repairs today to the CD drive and Keyboard so expect delays on E-Mail.

iguido.com’s server hosting package expired today which resulted in our long outage from 2:00 AM till 11:00 AM. All features are repaired as of now. All websites including alinssite.iguido.com and disabledplanet.iguido.com are working now.

Took me long enough to get this gallery up.

I took these pictures on the 13th of this month. It took me almost 10 days to get them up here. I am running quite slow right now since I have a huge E-Mail back log. However everything that comes in on the same day is being answered same day. It’s just old stuff that I have to skip to keep up with current E-Mails. All HUMAN sent emails are being answered quickly. I am backlogged mainly on forum notices.

I get cold very easily in cooler temperatures. Anything under 65F (18.3C) and I am reaching for a coat. Anything below 45F (7.2C) and I have my whole kit on, which is made up of the following.

The first and probably most important is my neoprene spandex mix “dive hood” that is designed for cold weather tactical use. I cannot wear a hooded coat or anything thicker than this because of the laterals on my Stealth 2QCR headrest, wearing something thicker would make it impossible to get the laterals to lock in. With this we are able to still lock in the laterals almost as normally, it’s just a bit of a tighter fit in the headrest for my head, which I don’t mind. I have to have this dive hood since I get cold on my head extremely easily.

I avoid wearing cotton, cotton sweats, becomes wet and then causes chills. Wearing polyester has always helped for me as I don’t sweat in polyester as much as I do in cotton, for most people its the reverse of this. I use the specialized polyester wicking shirts quite often, they are especially useful on warmer days when my back is likely to sweat in my wheelchair, that way I don’t wind up bathing my back in a wet cotton T-Shirt of sweat. The polyester shirts are also silky and soft which is a feeling i really like. I also wear polyester pants (not shown) but no matter what I do I still sweat in my private area’s due to the vinyl incontinence cover on my wheelchair cushion, which I am definitely thinking of removing as I am not incontinent, and if I do get the suprapubic catheter I will likely ask them to clamp my urethra shut so that no urine can pass through to my penis and it all be routed through the suprapubic tube.

These are my newest addition to my arsenal, they are Mystery Neoprene gloves that are available at Altrec through this link. I buy a lot of my gear through Altrec for two reasons, I have a close friend named Aubrey who works there, and she keeps close tabs on my purchases. Altrec as a company is also easy to deal with with great prices and an awesome customer service team which Aubrey is a member of. But thats enough of the Altrec plug. I got these Neoprene gloves which are 2mm Neoprene like my Neoprene shirt, on the back its 1.0mm Mystery Neoprene which is patented to the NRS company that manufactures them, on the palm its 0.5mm hydroskin Neoprene. My Neoprene shirt is 2mm Neoprene everywhere so I was a bit nervous as to if the gloves wouldn’t be warm enough to handle the cold temperature. Definitely yes, in fact they are a bit too warm. Yesterday it was a 29F (-1.6C) degree day and when I came home and took off my gloves my hands were slightly sweaty! So these gloves are perfect for the ultra cold weather we get sometimes and whenever my hands are freezing. They are a very tight fit which allows me to type and do things that you normally have major difficulty with gloves on, with minor difficulty. The only thing I am trying to figure out is how the heck to get them to work with the stupid touch pad on my laptop.

I have not worn my Neoprene shirt out of the house yet, I am saving that for sub zero conditions that need an extra warm layer under the coat that retains any heat you put into it. However I currently tend to wear my Neoprene shirt when I am sleeping since it is tight and warm and gives me an odd sense of comfort. I also love how smooth and rubbery it is to the touch, I like to lay on my side and rub my arm till I fall asleep. This is one of my ultra cold weather gear pieces. Wearing neoprene clothing is becoming common in some autism groups, especially ones that I am in. I wonder what causes it to be so dang comfortable.

SHown above is another good piece of my cold weather gear, it is a microfleece lined rubberized nylon coat. Although it is very thin it is extremely warm, even in 29F (-1.6C) degree weather yesterday. I also like that the outside is rubberized nylon since those kind of materials feel good to me and on warmer days i like to wrap that around my hands when I don’t necessarily need gloves but just some shielding from wind and some warmth. I also like that the inside is microfleece since some of the furrier things can cause my neck to spasm when you put it on my neck. It is hooded but we just stuff that inside and or have it positioned in such a way it protects the front of my neck.

Attatched to my powerchair is a nice black scarf that is about 4-5 inches wide and is made of very heat retentive micro fiber or something. Either way it is extremely comfortable and almost looks like it came with the chair. we keep this on the chair all the time in the winter. If it’s not cold enough we use it more to keep the back of my neck warm.

So now all of you know how I keep warm in the cold. How do you do it. Tell me in your comments!

Photo gallery is attatched, click any picture to go to it!

Today as I had mentioned a week ago we went to the MDA clinic downtown at UIC Chicago, the drive both ways wasn't too bad but it was a bit of a disappointment today. The woman at the counter was a bit curt with mom when she crossed over the "Patient Privacy Barrier" which is a stupid thing that has to be enforced so people don't feel, invaded, and also due to the stupid HIPAA laws. Mom got upset but the woman ended up being very caring and gave her and me hugs before sending us in back with our nurse. After that the nurse took my vitals and we began being bombarded with doctors. First we had a respiratory therapist come in and take a FVC (forced vital capacity) which I will get the results for on Monday, and then the speech language pathologist, nutritionist and their associate came in. After that I mentioned the neck brace and the OWNER of Ballert orthopedic supplies came in the room, I had lots of fun talking with him and gave him the card for my website. He might even possibly have me help re-do the Ballert Orthopedic Supplies (link) website. We discussed different types of braces and ironically I had been researching the Ossur Miami J & Aspen for a while and he said that would be one of our top options, along with the Ossur Aspen, and the Ossur Atlas brace. After him we saw the OT and PT and then they sent in the neurology residents and then FINALLY the actual neurologist after nearly two and a half hours of being bombarded by various professionals. They did their usual examination which got painful at the arms and legs and neck as usual so I had to take my painkiller. The thing that me and mom got a bit annoyed with is the fact that we still can't get the genetic testing from Athena, they want more records, and more test results, before we can go to Athena. And then they mentioned a follow up which we said, not till we do the athena. It's just too dam hard driving downtown and back. Either way I don't mind phoning around and pushing copies around, what I DO mind is having to go back downtown repeatedly which I don't think will need to happen much once they get more test results and see what tests I have had and can take at my hospital.

The entire visit was about three hours!

Whoa boy, this was a big visit for getting orders and prescriptions. I communicated my need for several wheelchair components including a communication device mount, which the laptop will go on. A power converter, and a recline system. She approved them all and signed them on the spot.

Next we discussed how my new headrest has impacted my neck positively, we wanted to take that effect whenever I am not in my chair too. She suggested a cervical collar so I be off to research cervical collars now, toodles! The reason she suggested it is several. One it will help correct the kyphotic deformity in my neck, two it will compensate for my weakening neck muscles supporting my big heavy head hehe.

Today I Had my X-Rays taken. This included my standard full spinal series and cervical spine series. They also threw in a chest X-Ray to check on the infection I had in my chest which showed barely on the last chest X-Ray but it was there, so if it does not show up now I am clear and the coughing spasms are something else! The they also did a Baclofen pump series to check the placement of the pump and catheter to make sure nothing slipped out of place.

I had a lot of fun with my Radiology technician and Radiological nurse, we were all talking X-Ray geek speak about the newest machines and also X-Ray technology and where it is headed.

The X-Rays were taken with James and Tammy who are my most loved pair of Radiology technicians in the entire pediatric radiology center.

And yes, you bet there were lots of hugs as usual. Gotta get hugs before - during - after my X-Rays. It’s a tradition me and my technicians have built hehe.

Yet again today I got my Baclofen pump kicked up 20% we went from 180 Micrograms per day to 216 Micrograms per day. Every time we see a small improvement in something. Today we saw my arm range of motion increased a bit. We also had a long talk about various things. Mom will be going to him to handle her compressed disk and nerve issues.

I also asked him about my idea of a neck brace to help with my cervical spine issues and also with my weakening head and neck support and he completely supports the idea. (pun intended)

Today I am going to my neurosurgeon to get my baclofen pump kicked up yet again and also discuss some plans for toehr things. After that I am going to go down to X-Ray for my favorite X-Ray series, my spinal series. Then we will head over to Dr. Amy Sun to get some new wheelchair ugrades signed.

Not much interesting going on with the whole illinois state to get me a new IEP one that actually works for me not against me.

Today I had my renal and pelvic CT scan done. This is my second CT scan in my life, last time was in E.R at Northwest Community Hospital. This time I had it in the Yacktman Pavilion at my own hospital for the first time. I swear to god I am going to make sure all my non emergency CT scans are done here.

Square rooms are out, oval is in. Static unlit walls are out. Movies and bright colorful lighting is in. Plain ceilings are out, again movies on the ceiling bright lighting. Dull sound of nothing but the CT scanner running is totally out. Soundtracks from your scene scape are totally in. Once you are in this room you wonder if this is amovie theatre,or a radiology suite, or a night club. It’s a bit difficult to tell the three apart. Absolutely felt awesome getting my CT taken today, my mind was in another world while my body was getting poked and prodded, that is the exact goal of the Philips ambient suite, is to get the mind somewhere else leaving the body for poking and prodding. So I had huge fun today! Hey doc, order up another CT why don’t ya!

I am now registered on patientsllikeme.com under ALS/Motor Neuron Disease. Now we don’t have confirmation that it is ALS/Motor Neuron Disease, but that is our most likely candidate. That aside you can now get a really good grip on my medical progress through this button. Click at and learn more about me from the medical end!

Warning: Misuse of any of the information displayed at the external site is a federal crime, if you are found to be abusing the information you will be kindly asked to cease usage. If you use the information to attempt to physically harm me or my family you will be prosecuted to the fullest extent of the law.

In other words, just read it, and use it to gain knowledge and learn about me, don’t do anything else with it.

It is also on the side bar permanently!

Today a cute girl named Courtney from Apria came once they had received the programming parameters for my Respironics Cough Assist machine. She set the settigns and then ran me through the procedure and made me repeat it back for safety. This machine is very powerful, definitely not something to go willy nilly and tweak on your own. I have been ventilator’d before but this thing is ridiculously powerful. Think of a ventilator that fills your lungs near bursting point in air at high pressure in about two seconds, only to suck it out in two more seconds. Once you get used to the way it feels it feels pretty good since you can feel the stuff in your chest moving up and out. Although there is no trach and I only use it about 20 minutes a day it is still considered a ventilator because it sucks and blows. And I would have to say, this thing really sucks.

Hope the dang “cough” spasms stop soon. I think they should now that I am working on removing the gunk from my lungs.

Today my Cough Assist machine was delivered. Or should I say for now, my Cough Assistless. Our Respiratory Therapist Suzanne was awesome. She waited for us for a whole two hours as we badgered the doctor’s office to get the programming info out of them. She set it up anyways. We had a lot of fun making ventilator jokes and talking about ventilators and respiratory equipment. After about two hours we finally decided to give up. Hopefully tomorrow we will get the programming details!

Until then, the cough assist machine is a cough assistless machine.

Today we went to my pulmonary specialist for an emergency visit. Things did not turn out good today. A ventilator did not get involved today, but no one knows when one could suddenly get involved. However today he checked me out and noticed I was on the Biaxin and said, forget Biaxin switched me to another, maybe stronger antibiotic. Pending this switch he sent me down for an emergency chest X-Ray to rule out rolling pneumonia, which is walking pneumonia reworded for us people in wheelchairs. The X-Ray was “stat - wet read” which I laughed at since it’s digital, I love it when they use archaic terms that totally contradict technology. They read it and I was extremely lucky, I was pretty damn close to pneumonia. The Cough Assist order that was delayed until further research into the device could be done is being activated. He is hopeful that I will be able to tolerate the device, if not then we are going to have huge problems.

Shown above is probably the dirtiest image I will ever post on this blog, mind you it’s the image on the right!

Today we went to my new Nephrologist Dr. Kaplan at the Yacktman Pavilion. I definitely don’t have kidney failure yet. However there is a big problem in the fact that i don’t eliminate everything from my bladder that I should and also have that damn burning problem. We can’t let this go untreated as it could lead to kidney damage and or failure.They tried drugs, didn’t help. Electrical stimulation of the bladder, it’s a loosing battle with the way my spinal cord is in a degenerative state. That leaves only one option. Surgical intervention in the form of a Suprapubic MIC-KEY insertion. This will consist of a procedure that is very akin to my G-Tube insertion, two inch incision to insert the scope, and then a big coring needle to make the hole for the MIC-KEY to go into the bladder. At that point I predict I will have a Foley style tube in for a month and get switched to the button, either that or direct to the button. I hope it is direct to the button as those Foley’s suck. We are expecting to do this surgery in the next month.

You are probably saying, why can’t I cath through my penis. It won’t happen, I am way too spastic and have autonomic dysreflexia attacks from it. Remember back to that CMG and Uro-Flow? Thus our only option is to completely bypass the penis.

The surgery is not a confirmed thing yet, though it is extremely likely. The results of a renal CT scan along with the pelvis will tell us if I have kidney problems such as crystals or stones. If it turns out to be a kidney problem then surgery or drugs to repair it will be given and the Suprapubic Catheter will be scrapped.

Here’s to hoping the Suprapubic Catheter winds up getting scrapped.

Respiratory code red has been declared again, emergency appointment is exactly right after my Nephrology appointment today. Last night was a nightmare, I was up till nearly 5 AM when I finally had enough seizures to force me to sleep. I couldn’t breathe well at all, continually having those heaving attacks. I even took inhaler which didn’t help me worth an ounce. My pulmonary put this as emergency for this reason and also because the last thing we want to see is me being carted into the hospital in an ambulance. Since at that point most of the interventions we can try at this point would be shot.

Due to a mix of the loss of our new co-host due to school issues and also my rapidly worsening respiratory status I have come to the final decision of freezing the podcast again. This freeze could very well be permanent unless we figure out some way to get my respiratory status cleared to green. Which, I hold doubts about.

Today we got a call confirming that we had been approved for a priority appointment slot for my Nephrourological problems. We will be going to the Nephrologist on Monday next week.

Today we called my doctor after I urinated and had an alarming amount of yellow powdery sediment in the bottom. Also my respiratory is not much better so we decided to get that checked too. They are calling me in for urgent Nephrology appointment. Hopefully in the next week or two, can’t put up with this crap much longer. The doctor wasn’t too satisfied with how my respiratory progress is so he decided to fire a few more bullets at it with some BIaxin.

It is about friggen time that we finally got the appointment to go see the doctor from the Muscular Dystrophy Association (MDA)

After several weeks of leaving dead end messages we finally got fed up with our chapter and told them to get a move on. Apparently someone we were dealing with let something totally flunk out. Either way we finally spoke to someone who could so something for us and finally have our appointment. Next week on Thursday I will be taking another drive downtown into the city to get evaluated and hopefully approved for the Athena genetic testing series. One Athena series, that does not even test for more than a few diseases costs about $20,000 Dollars! That is freakishly expensive, of course there must be an astronomical amount of work that goes into each sample for it to cost this much. Because I really can’t fathom $20,000 Dollar rip offs. The testing is not covered under my insurance policy, although Athena provides a protected plan that if you pay $2000 up front you don’t have to pay the rest if your insurance does not cover it. We still don’t have $2000 Dollars that we can sink on a test! We need to save our cash for surgeries and the like.

Heres to hoping I get approved for the testing next Thursday.

If I do get approved then MDA will be donating the $2000 to pay for the specialized testing.

We are still at a code yellow status with my respiratory problem. I am still not able to move the majority of what is down there and its quite uncomfortable. To make things worse I get spasms like I should be coughing yet there is not enough muscle there to give an actual cough. I am almost done with my Prednisone series and not feeling much better. As soon as I finish the series I am going to give it a few days and if nothing is looking a lot better we will be calling the doctor, again.

I literally cannot wait till October 28th 2009, Thats the day that ATIA 2009 starts. Which is one of the largest assistive technology tradeshows. Not much else to say except companies like Dynavox, Tobii and Cambium technologies will be there. Along with many other companies. The main specialty is the communication industry. Be warned, I will for sure slobber over, and on, the new devices.

Today we got my prendisone and inhaler. A few minutes after I did my inhaler I was able to bring up a good deal of gunk from my lungs which shows that more airways are being opened up. We also have to use the prendisone to clear whatever is down there up. As my doctor thinks I possibly have a lower respiratory problem.