I think it’s only natural for anyone who’s affected by ALS to want to know more about it’s progression. And even though it affects everyone differently comparing your onset with someone else can certainly give you somewhat of an idea of how fast or slow yours might be progressing.
Here is a chronicle of my onset from when it was first noticed to when I was diagnosed.
|Fall 2014||While working as an IT sub contractor at Warner Brothers Studios in Burbank, CA. I start noticing weird sporadic muscle spasms in my left calf and glute muscles. It’s never happened before, more bothersome than anything, but not debilitating.|
|1-Feb-2015||I started to notice that I wasn’t walking as fast as I normally do. My stride and gate for some reason seemed a little shorter. It’s also noticed by a co-worker who wondered why I couldn’t keep up with her when normally I walked faster.|
|1-Apr-2015||When I was walking to meet the train I start to notice that my shoes don’t seem to fit just right, like I’m shuffling in them as I walk. I just thought I needed new shoes. Ironically enough this is a similar observation made by the press of Lou Goering as he rounded the bases during spring practice.|
|24-Apr-2015||After suffering a viral infection I’m admitted into the hospital for what feels like a heart attack, but turns out to pericarditis.|
|1-Jun-2015||Back home in Texas I mention to my wife that I seem to have a weird step. She notices that my hips seem to be off when I walk. I tell her it’s like one leg is longer than the other. But still no noticeable pain in my legs.|
|1-Oct-2015||My wife notices that my foot looks as if it’s dropped and my walk now consists of a limp to compensate. There is a little discomfort in my left ankle and I’m unable to stand tip toed on my left foot whereas the right seems unaffected. My right leg isn’t showing any fatigue and is carrying the brunt of my weight.|
|11-Dec-2015||After a very painful day at Six Flags with the family, I decide that this is not going to correct itself and set up an appointment with my doctor to find out what’s going on. Walking a lot slower than normal and with a limp, there is considerable pain if I walk for any long duration of time. By the end of the day I can’t wait to sit down in the car and go home.|
|6-Jan-2016||I go to see my primary care physician and she notices the limp in my step and the diminished leg strength. X-rays are ordered to rule out any broken bones and she confirms there is nothing wrong with the bones in my leg. I suspect something related to the pericarditis, but my doctor doesn’t think so.|
|11-Feb-2016||Upon the orders of my primary care physician an ultrasound of my leg is requested to rule out any circulation issues and an MRI of my brain to rule out MS. Both are cleared and off the list. I’m referred to my first of two neurologists. Later that month I take a business trip and walking in the airport almost kills me. I’m walking slow, with a limp, and both legs fatigue after only a short time.|
|13-Mar-2016||My first visit with neurologist Dr. Barta. She is extremely nice and orders an EMG (which isn’t nice at all…they literally shock your muscles!) and another MRI this time of my spine and pelvis. She concludes that MS, MD, and Huntington’s are off the table, however ALS is not. She cannot confirm it nor can she rule out. She refers me to an ALS specialist named Dr. Heitzman at Texas Neurology in Dallas. He specializes in ALS and ALS research in the North Texas area.|
|21-Apr-2016||Visit #1 with Dr. Heitzmen and my second EMG. Confident that I don’t have ALS and that it was something treatable like Lyme disease or MMN, after all I dodged a bullet with a heart attack a year earlier, I just knew it wasn’t ALS. Then the bomb is dropped and I’m told during my visit Dr. Heitzman thinks it’s ALS.
My wife and I are devastated. We’re told to get blood work done immediately to rule out some ALS mimickers and to see him again in a week. I ask him why he thinks I have it and he says “because you seem like a very nice guy.” He looks at my wife and asks “has he always been like this?” “His whole life” she says. I’m told it’s called the ‘nice guys’ disease. This next week is the scariest week of my life. Fear of the unknown and what “could be” shakes me to my core.
|28-Apr-2016||Visit #2 and the results of the blood work are reviewed, he then assures my wife and I it’s ALS. I ask him compared to all the ALS patients he’s diagnosed how sure does he feel my diagnosis is, he says it’s ‘text book’. We’re told that there is no cure and they don’t know what causes it, so we’re urged to draft a living will, vacation places we’ve wanted to go while there’s time, and that Medicare kicks in immediately for ALS patients should I choose to retire. I can’t even think at this moment.
I’m in shock. I start to cry and I’m told by the doctor that the average lifespan of someone with ALS is 3 to 5 years, some go sooner, some live longer, and some even go into full remission. “But I’ve never seen it” he says and by the look on his face the mere mention of it seems ridiculous. As I leave I tear up and tell the doctor with all the false bravado I can muster “well I’m going to be your first remission” and he says “I hope so”, but by the doctor’s expression he doesn’t seem too convinced.
The visit is devoid of all hope. For three weeks, one week prior and two weeks after, I experience the worst depression of my life. And this is where it gets really important, I FELT LIKE I WAS GETTING WORSE. I know nothing about this disease and I’m being asked by all my friends and family if I’m going to fight this. I have no clue where to even start! All I can say is what I was told by my doctor, “there’s no cause and no cure”. How do you fight something like that?
(Hint: You don’t need to know how at this point just that you’ve decided ‘you are‘)
|1-May-2016||Then my team started to show themselves. My wife goes back to work to help pay for the supplements and new organic diet that doubles our food budget for me alone. My sister finds websites showing people who had beaten ALS and reminds me that my faith in Jesus is not just forgiveness but ‘healing’. My Mom, father-in-law and mother-in-law graciously loan us money to secure a downstairs apartment and pay for food and supplements while we wait for my wife’s new job to start paying out. My cousin and her husband (two of our best friends) come over and help us move into our new apartment, helping with all the things I’m no longer able to do. A hometown friend calls up and starts a Go Fund Me account to help pay for medical bills. Two high school classes I went to school with generously take up a collection to help pay for supplies, supplements, and food. Last but not least my amazing and brilliant nutritionist nephew Cameron volunteers his time, finances, talent, and huge knowledge of the human body to help me find ways to to KILL this disease…..
Marty is fighting back!