Friday, September 27, 2013

Additionally

I should add the following to part 1
I will discuss drugs and treatments later, but you should seek a prescription for Riluzole/Rilutek. While there's currently no cure for ALS, Rilutek is believed to slow the progression of the disease.
Also, my second part is still in the works...

Tuesday, September 24, 2013

Part 2

The second part of my writing project will be on the subject of Breaking Your Bad News. I am keen to hear from PALS that would be prepared to share their experiences.

Saturday, September 21, 2013

A PALS Guide to ALS - Part 1. Diagnosis

Diagnosis

Most things about ALS feel like a kick in the teeth.

Sadly, the process of being diagnosed is no different. There are currently only three ways to verify you have ALS. Two tests involve genetic tests for a hereditary form of ALS, Familial ALS (FALS). The third test is conducted during an autopsy. I told you it was like a kick in the teeth!

That speaks to the tragic truth about ALS: theres no known cause, and no cure.

As a point of reference, less than 10% of ALS cases are diagnosed as FALS.

How do Doctors diagnose ALS? The simple way of answering is to tell you that they run tests for everything else, and when those tests eliminate every other possibility you're left with a diagnosis of ALS.

Tests usually endured on the way to a diagnosis include a barrage of blood tests, a magnetic resonance imaging scan (MRI), and an electromyography test (EMG).

An MRI involves dressing in one of those fetching hospital gowns that tries to leave your ass hanging out of the back, laying down on a table that then moves you through the MRI machine. A scan in an MRI takes between 30-60 minutes. Modern MRI machines have come a long way, but you still won't find a quiet MRI unit...buzzing, clicking, and pulsing noises can be unsettling, but they are to be expected. People with private insurance should be prepared for a large bill from their insurance company. My bill, with good insurance , was over $200.

The basic purpose of an EMG test is to measure the electrical activity produced by your muscles. There are two forms of EMG tests; surface and intramuscular. A surface EMG, as the name suggests, is non invasive. Intramuscular EMGs use a super-fine medical needle connected to a wire, and insert the needle into the muscle being tested. An intramuscular EMG sounds painful, but the tiny needle, I found, was no worse than a small bug bite. In fact, I barely felt a thing. The test can be fairly prolonged, since a large sample of data is required to produce an accurate report. My test was just shy of an hour.

Occasionally, in the course of seeking a diagnosis, a qualified doctor may perform a lumbar puncture, which sometimes goes by the name “spinal tap.” I have yet to experience a lumbar puncture, so I can't speak to level of discomfort experienced during to procedure. A lumbar puncture is performed to draw cerebrospinal fluid. The fluid is then analyzed to rule out genetic issues.

After an initial barrage of tests, your physician should have narrowed down your diagnosis to some sort of motor neuron disease, but a second opinion should be sought. Actively explore your options for a second opinion. Try to find a research hospital that has experience in treating ALS patients. I live in rural Virginia, and was first diagnosed at a regional hospital. I was given two choices for my second opinion, and settled on Johns Hopkins.

The process of obtaining a second opinion is a very good opportunity to jump into the ALS community. Hospitals and clinics that specialize in the treatment of ALS tend to have a much more comprehensive support structure. My visits to Johns Hopkins, while a long round trip, tend to be a very efficient use of my time. I see physical therapists, occupational therapists, and representatives from national organizations like the MDA and ALSA. I also found it fairly simple to gain access to drug trials by visiting Johns Hopkins. Perhaps it is their status as a research hospital, but the staff there always seem to have their ear to the ground regarding drug trials.

Note: an EMG should be performed by a qualified doctor.

Friday, September 20, 2013

A PALS Guide to ALS - Introduction

I wouldn't say there is a dearth of information for someone recently diagnosed with ALS. Nor is there an overabundance of information that serves the recently diagnosed…

...Well,not in a way that made sense to me. Specifically, not in a voice and tone that resonated with me.

I wanted my information presented almost like a conversation in style...in a pub…over cold beer(s)…with an endless supply of unhealthy food...and an occasional game of pool.

Perhaps that’s the better way to describe my approach; more like ALS for Dummies than a medical journal.

That being said, while I aim for a more casual approach, I want to be clear that I strive to be precise and up to date whenever I'm quoting research and statistics.

Lastly, I refer to this project as a roadmap because every patient with ALS starts their journey from a very similar place, and end at the same place. Our paths will be different, for sure, but we will face many of the same obstacles and choices. I hope this effort is of some use. I hope it helps to inform you as you face some difficult decisions.

Wednesday, September 18, 2013

CQN

A wonderful account of my last trip to Celtic Park was recently published in the CQN magazine. I've always enjoyed reading the CQN magazine, and I'm giddy that my story made it onto the pages. Find it on page 50, at this link.

Monday, September 16, 2013

Pals guide to ALS

I have decided to give this project a shot.

But I also think a short disclaimer is in order; I don't claim to know everything there is to know about ALS and MND, and I encourage readers to offer their own insights and experiences.

...time to work on my introduction...

Sunday, September 15, 2013

Thursday, September 12, 2013

I'm In Trouble

Cora came home from school yesterday talking about how she wanted to get a fenced enclosure and a pony.

I blew it off, confident that a good night of rest would soon make this request a thing of the past.

While I was away watching VMI play, Cora drew up plans! Now, it seems, the pony is going to have a cow for company.

Monday, September 9, 2013

Dance

Dance whenever the opportunity arises

Friday, September 6, 2013

Aeschylus

"It is not the oath that makes us believe the man, but the man the oath."

Thursday, September 5, 2013

Wednesday, September 4, 2013

Blog Numbers


The 15,000 seat beach volleyball arena at the London Olympics
This site passed a notable milestone recently: 15000 unique visitors

The geek in me feels obliged to point out that tracking can only say that the site was accessed from 15000 different connections to the Internet, so there's a margin of error.

Still, my 15000 visitors have amassed 43000 visits to my blog, and viewed the pages and posts on my site 159000 times! My visitors came from 105 different countries.

I never set out to get big numbers, but its certainly a pleasant surprise to see how many people have tuned in.

Tuesday, September 3, 2013

Rohn


Drop Off

I wouldn't describe it as a picture perfect drop off, but we took Cora in for her first day of school today.

I suppose the key thing is that Cora made it to school on time.

But our idyllic image of pictures on the school steps didn't happen. Unfortunately, when we dropped off Cora we were hurried by a staff member who was flustered that Cora didn't exit our van on the right side.

Now, to anyone not currently faced with dropping a child off at school, the issue of which door you use to leave your vehicle seems irrelevant. Hell, there's a big part of me that thinks its complete BS.

...Then again, I'm sure folks at Cora's school are simply trying to find an efficient, safe way to get kids in and out of school.

The twist is that we've been encouraging Cora not to use the door on the side of the van that has the ramp. The curbside door automatically deploys the ramp when opened, so you can see why we're trying to keep the girls away.

Amanda swung by the school to get some clarification, and we'll stop in at the end of the day to get those photos.

WW

LIL