ALSMatters

JEFF, YOU HAVE WORKED SO HARD TO MAKE LIFE EASIER FOR PALS. THANK YOU FOR EVERYTHING ! I DON'T KNOW THAT THIS IS WHAT WAS RXPECTED BUT WHAT HAS BEEN ON MY HEART!

LORI

For the past two and a half weeks I've felt horrible. It began after feedings I would feel a little nauseous. At the time we were doing two cans at a sitting so we cut back to one can. This helped for a couple days but the nausea returned. As time went on I just began feeling worse. A trip to the doctor showed my PEG was infected and got me a week on the antibiotic cephalexin. This appeared to help but I was still a little nauseous after a feeding.

As always happens on the weekend I felt horrible all over again. I dread the emergency room though so I rode it out till Monday. The issue with that was that I was taking in very little fluid and got dehydrated. Got in to see the doc late Monday and he recommended I go to the ER for IV fluids and testing or at a minimum outpatient labs the next morning. As I said I dread the ER so we went for labs and two abdominal x-rays the next day.

We spent the remainder of the day getting water in me and I was beginning to feel almost human. Around 9:30pm that night my heart rate shot up to over 130 bpm. I dread ER's but there are some things you don't trifle with so off we went. They took me in right away drew five vials of blood, two chest x-rays, an EKG and urine test. To make a long story short the doc came in at 4am and told me everything was perfect. He did mention perhaps getting an ultrasound of the gallbladder.

It's four days later now and although I'm somewhat drained I'm feeling pretty good. None of us are sure what exactly happened but I'm back now and will get back to work.

I have a Phillips Respironics AVAPS unit that the VA supplied. I asked the VA if they would contact the salesperson and let me know what it would cost for the software so I could read the card myself. I already have a card reader so all I wanted was the software. The response ... they won't sell it to me. Wrong answer. You're going to tell a self proclaimed geek that's in front of a computer 16 hours a day he can't access the data he wants because you won't supply the software!?!?

As time permits I'm going to be snooping around the data card and try to figure out the data format. If/when I do I intend to write software that will read it and generate reports and make it available here for free. I'll keep you posted.

I spent today working on the documentation for DynaKey and Phrases. I finished DynaKey and got most of the way through Phrases. I need to include an example to phrase scripting using categories and it should be finished. It's amazing how hard it can be to describe how to do something. I'm trying to be simple and concise but we'll see.

I don't know why but it's not until this time at night that I find I can "get going". From the time I get up until probably 7pm I have problems focusing. For some reason around 7pm I wake up. The problem is my wife is just the opposite and since I need her help I can only stay up until around 11pm without making her suffer. That means into bed with 10mg of Ambien to knock me out which may very well be the cause of my issue. What ya gonna do? Hopefully my body will get used to this sleep pattern soon.

I spent some time that last couple days reconfiguring my development environment. I put together a continuous integration server using TeamCity on a virtual PC, changed over to Jira for issue tracking and tied them together along with Subversion. I now have a convenient and informative interface for looking at status of builds and issues.

While implementing TeamCity MSTest kept giving me issues so I switched over to NUnit. This unfortunately showed me just how lacking my tests are. Right now I'm working on the documentation. Once that is complete I will release 0.8.5 which will mostly be just documentation and a few big fixes. After that I'm going to add tests and shoot for 100% coverage. I know that as it stands now I can't get there but that's what refactoring is for.

 

Today was a long day. We got up at 5am and got on the road at 6:30 for the two hour drive to the facility that was to install my Permolock. The Permolock is a device used to lock a Permobil wheelchair (C400 or C500) in place in a vehicle. The closest place that is certified to install them is two hours away and thus the drive.

We ended up having to take a detour due to construction and got there a little after 9am. By the time the tech got started it was almost 10am. We got the position measured and marked and proceeded to wait. It took three tries and adjustments to get everything working correctly and then we began the two hour drive home. We finally made it in the door just before 5:30pm. I'm dragging and for today I'm done. Oh but before I go the Permolock works great.

For those of you that missed the ALS TDI Quarterly Research update last night there was some good news or at a minimum cause for hope. They have discovered a substance which within the mouse model helps maintain weight, slows onset and increase survival. This is a first. Granted this was in a mouse not a human but ALS TDI has in my opinion a good track record in showing comparable results between mouse and human.

They record the sessions and put them on the website for later viewing. If you were unable to attend it should be online within the next couple days at ALS TDI.

I'm losing volume pretty steadily. It's getting hard for some people to understand me. Had a visit a couple of days ago from BJC Homecare. PT supervisor does the initial visits, and I should be contacted this next week from the PT therapist and the OT therapist. I have another appt Aug 27 with the neuro people, probably for more tests.

Today my speech was pretty bad. It is hard to communicate with others. They need to be looking diretly at me to understand me better. I have a slow progressing form of ALS. So far my speech is the only thing affected, and my breathing a little bit.  It is sometimes frustrating to talk, but I have always been such a talker it is difficult for me sometimes. I am very grateful to have such slow progression, but sometimes I just need to vent. 

I get around just fine, and I have a Palm3 communication device so I can take it with me. It is very portable,but slow to use. People don't seem to have the time to wait for me to respond and that has been discouraging.  I don't use it much. When I can get as fast at using it as I am at writing with pen and paper I hope to use it more.

I got my new power chair from the VA today. It took almost 13 weeks from the initial measurement until I actually got it. It is a Permobil C500 RS just like the one below except mine is blue. So far I'm very happy with it but it's only been a few hours. Tomorrow I intend to put it through its paces and see what it can do. Expect a review once I've had some time in it.