Tobii

This is the first blog post that I have typed using my eyes. I'm pretty sure that statement is as bizarre for you to read, as it is for me to type.

I recently received a tablet computer that I can control only using my eyes. The device, made by Tobii, will become my primary form of communication as ALS impacts my mobility and speech.

Time for me to practice my eye work!

Shoulder

I just got back from a trip to Baltimore, where I visited the same floor as usual, but this time it was to see the orthopedic surgeon at Hopkins.

When I fell and broke my arm a local surgeon fixed the break by inserting a nail down through the top of my humerus. The nail occasionally causes me some discomfort particularly when people help me move my arm. There was a concern from the folks in the ALS clinic that as ALS progresses this may be exponentially harder to contend with.

I'm really not sure if I'll proceed with the surgery, as it will involve two more trips to Baltimore, additional expense, and all for something that doesn't really affect me on a day to day basis. As the doctor said, there is no guarantee that removing the nail will rid me of discomfort.

Food for thought.

Comments

Comments from readers have dried up.

It's okay to laugh. It's okay to ask questions.

BPAP

At my most recent appointment Amanda pointed out that my arms felt noticeably sweaty. The real issue was that I was getting sweaty while I was doing mundane things.

The folks at Hopkins sent us home with a pulse oximeter; a small device that clips on your finger. I wore it overnight, and sent it back to Hopkins so they could examine the recording.

I forgot all about it until Hopkins called me on Wednesday, and explained that the oxygen levels in my blood seemed to fluctuate during the night.

Their recommendation? That  I get a BPAP device.

The first version of the BPAP was taken off
the market due to the unpopularity of polka. 

Your next question is probably, "what is a BPAP device?" I'll do the easy thing and copy and paste from Wikipedia: Bilevel positive airway pressure (BPAP) is a continuous positive airway pressure (CPAP) mode used during noninvasive positive pressure ventilation.

The easiest way to explain it is to think of it as a machine that aids me in taking full, deep breaths while I sleep.

My BPAP machine

I think if I had more time to think about it the prospect of being hooked up to a breathing machine would have been very challenging to process. As it happened, things moved so quickly I didn't have time to think about it; A local medical supply company came and installed the BPAP about an hour later.

Re-post - What's in the Name

The story is here

WMU

Down the Line

Amanda and I went to Baltimore this week. It was an overnight stay to make the morning appointment and journey home slightly less tiring than going up and back in a single day.

The journey is still fairly exhausting. Two days after we got back, I'm still tired and my legs feel particularly tight.

I recently blogged about submitting my order for a piece of hardware that will help me to communicate.

Given that finances also arose in the same post, the topic of medical costs -- hardware, supplies, procedures, care...etc -- was fresh in our minds during Thursday's appointment.

We finished the drug trial portion of our visit and were joined by Lora Clawson. There are many people that have pivotal roles at JHOC in the Neurology Department, but I think there are few as instrumental as Lora.

Amanda and I have always tried to stay a step or two ahead of ALS, and conversations at JHOC often inform our decisions.

We talked with Lora about the medical procedures that are possibly in my future. The first thing we discussed was the need for a feeding tube, should I suddenly lose a large percentage of my body weight. Apparently, most PALS choose to go ahead and get a feeding tube.

The hardest decision I'll face looks certain to be about a breathing tube. The tube is inserted once the patient has undergone a tracheotomy, where it remains. The hardest part is the ongoing care that's required; someone must be within arms reach 24hrs a day. It basically becomes a team effort, as no one person can work around the clock. Lora estimated that the additional cost of medical assistance totals $500,000 per year.

In stark terms, I will require support that will either push my family support network beyond its physical and mental limits, or will push them beyond their financial limits.

I think that could be the definition of a lose/lose situation.

Still, our conversation with Lora wasn't finished. Since our conversation had taken us so far down the road my journey would go, there seemed little point in avoiding the end.

It's at the end that ALS, in the words of Lora, is merciful. I will have a harder and harder time breathing until the CO2 levels in my blood rise to the point that it will put me to sleep, and that will be that.

That's all a fair distance down the line, but -- as we try to prepare for what's ahead -- it provides plenty of food for thought.

Healthcare

I wanted to write a positive post about a recent event concerning my health care, but I feel it's time to put my cards on the proverbial table.

I feel few things are as morally bankrupt as the US healthcare system. The simplest way I can say it is that the care you receive (if any) correlates directly with your income and the degree to which your employer values your health in comparison to their profits.

When Louise was born we received a bill from our insurance company for approximately $300. That amount was to cover the deductible with our insurance company, while our insurance company paid the remainder of our costly visit.

Three years prior, when I was employed elsewhere and covered by less comprehensive insurance, we received a bill in excess of $2500 to cover the deductible for Cora's birth.

Now consider someone with a basic high school education and a job that doesn't provide health insurance...

Since my retirement in November I spent six months -- technically, still as an employee -- on short term disability. At the end of that period, much to the credit of my wife who filed the paperwork, my health insurance is now covered by Medicare. For the uninitiated, Medicare is a federal program that provides health insurance for retirees or people with a permanent disability. A percentage of your earnings are paid into this and other programs throughout your working career.

I am very thankful that Medicare covered the vast majority of the $20,000+ bill we have to pay to enable me to communicate in the future. Today, we placed an order for an eye-operated computer that has been designed for the sole purpose of helping people like me communicate. Additionally, our local ALSA chapter awarded us a grant to cover over two thirds of the remaining cost.

We successfully finished all the paperwork for a Tobii device today. That's my good piece of healthcare news.

Still, my good news today doesn't change the fact that Amanda must seek her own private health insurance.  And it doesn't shave off one ounce of the anxiety Amanda and I spent trying to figure out how to get our girls health insurance... did I mention moral bankruptcy?

Big Jake

Jake and I passed our certification test today. Jake and I have been together for just over a year now, and today's test has me finally taking possession of Jake and all his paperwork.

I owe everyone at St Francis my deepest thanks.

Boil

I haven't been very consistent with my blog posts recently. I don't really have an excuse. Sure, things have been busy : trips to Maryland, Charlotte, and Charlottesville, the end of Amanda's school year, Cora graduating from Pre-K, and the list goes on...but plenty of things have sprung to mind as being worthy of a post.

A few posts that are overdue belong to Cora and Louise, some to Amanda, some to my family, and maybe a few more weird music videos. An important post about a group of supporters is also in the works (I'm trying to come up with a nickname for the collective group!).

When it comes to the girls, a part of me wants to gush advice and wisdom. I wish I had some words that could provide some support, guidance, life lessons, or carry warnings of potential pitfalls. But life happens while you're making plans. I'm off to ponder. Be back on the boil soon...

D-day

Forgive the shameless attempt at attention grabbing with the title of this post. But today is a personal D-day of sorts.
Yesterday was the last day of the school year which made today the first day (officially) that Amanda stayed home to care for me.

We are both very excited and happy that Amanda is able to stay with me, and it's something that was made a possibility because of the Conway Cup. But the aid of the VMI Soccer community, family, and friends made it truly feasible; an effort pulled together by the head coach, Richie Rose.

Combine that with the noticeable bump in my frame of mind and improved energy, and it's an understatement to say that life since the end of the drug trial has been good.

I wish that meant that there was some sort of improvement in my symptoms, but that hasn't happened. I don't expect it to, either.

Right now, if I extend my forearm parallel with the ground and my palm is facing the ground, I struggle to keep my hand up for more than a second or two. While I do have limp wrists, I think it's a little late to start a career in fashion

To everyone who helped with the Conway Cup, and the VMI Soccer community, family, and friends : Thank you for today. Thank you for helping me keep Amanda home for at least the next year.

R

SL