Make Joe Great Again ALS Fund
Who is this Nutball?
Joe Giddings. He's also gone by JoJo, Satchmo, Goldcard, Nightfang, Godai, and more recently SteampunkJoe. He's writing this, so strap in and hold on!
Joe is a 43 year old IT professional that lives in Winterville, North Carolina with his wife (Becky) of 20 years and his son (Ewan) of 9 years. But there's more to him than that! He's a published writer, video game affectionado, baseball fanatic, and loves beer and scotch. He's a huge fan of Star Wars, Star Trek, comic books, movies, music (he plays bass guitar), and enjoys looking at the night sky with his telescope. Ancient Aliens is one of his favorite shows, not because he believes it, but because its fascinating what these guys believe. Toward that end, he would love to meet Giorgio Tsoukalos, just to discuss theories.
Yeah, he's a big old nerd, and he owns it.
Joe and Ewan, July 2016
Joe and Becky, January 2017
So, let's get serious for a moment.
Joe met Becky when he was a rising sophomore at East Carolina University and she was a rising senior at DH Conley High School. He was struck by her intelligence and her love of all things geeky and nerdy. It didn’t take long for him to ask her out and he fell in love with her almost immediately. It has been said over the years that they were the perfect geeky couple. They dated for four years and were finally married in March of 1997. Like all couples, they had their ups and downs, but they never stopped loving each other.
They lived happily together for a good long while just enjoying each other’s company. But that all changed in 2007 when Becky became pregnant with who would become their son Ewan. They moved to a house in Winterville and everything was perfect. With the addition of Ewan, it felt like everything had fallen into place to make life what they wanted it to be.
Unfortunately, things were going to change. In June 2016 Joe noticed that he was starting to develop some weakness in his right hand. Chalking it up to a lifetime of using computers and playing video game, he treated it like carpal tunnel syndrome and went on with his life. However, in September 2016, while practicing baseball with Ewan, he noticed he couldn’t throw the ball as hard nor hit it as hard. He went to his doctor to have his hand checked out. The doctor tested him for carpal tunnel but couldn’t find anything conclusive. He referred Joe to a neurologist, and in the meantime told him to continue with the carpal tunnel treatments.
A month later when finally visiting the neurologist, what started as a simple visit turned into a nightmare has the doctor carelessly mentioned motor neuron disease as a possibility. She ordered EMGs and a ton of bloodwork. She also worked to get Joe an appointment at the Duke ALS Clinic, but she made no effort to make it soon. She was content to make Joe wait three months to get a definitive answer.
(I must make mention of that at this point we started to put other things together: several falls, occasional slurred speech, weakness in the left hand, inability to button pants and shirts, inability to put on socks, crying at inopportune times, etc. It was troubling to say the least.)
Joe went back to his primary care doctor several times over the next two months and finally his doctor decided that it was very likely that he had ALS. He bent over backwards and went the extra light-year to get Joe an appointment with an expert somewhere, finally finding a doctor at Wake Forest who could see him the following Monday.
That next Monday they went to Wake Forest to see the neurologist. After a very thorough examination he agreed that it was very likely that Joe had ALS. He wanted to check a few more things, but they were long shots. VERY long shots. But those did not pan out, leaving only ALS in its wake.
It goes without saying that this was devastating news to everyone in the family. This was going to require massive changes to their lives and their routines. And of course, the end result of ALS would have an even larger impact on the family when that time came. One of Joe’s biggest fears was being brought to life-being a burden on his family. And he knew that no one would consider him a burden, but the fear would still be there, a specter hanging over his shoulder as he watched his body slowly fail.
The part that troubled Joe even more was that he knew that he and Becky were the perfect couple and he didn’t want his wonderful wife to have to live her life without him. They were inseparable, and now at some point they would be separated permanently. She would have to bear the brunt of the financial burden that this would cause. Caring for a person with ALS is extremely expensive and not something you can avoid.
This is what keeps Joe awake at night.
Why Does He Need this Money?
To buy comic books, video games, scotch...
See that part up where I mentioned that caring for someone with ALS is expensive? That’s the truth. At the moment I’m still able to walk and talk and feed myself and do just about everything else independently. However there are many things that need to be done before I need more extensive care. For instance, our current home is just not designed for a handicapped person. The entire master bedroom suite will have to be remodeled to allow handicap access. This would also involve ripping out the existing master bath and moving it to a new location. And that new bathroom would have to be built to accommodate the handicapped person as well.
Furthermore, we would have to look at transportation. Right now I’m able to climb in and out of the car and walk away from it. In the future when I’m in a powered wheelchair that will no longer be the case. We’ll need a van that has been converted to accommodate a person in such a device. And while I have no doubt that my powered wheelchair will be a sweet ride like Professor Xavier’s from the X-Men, I'll still need to be able to get around a little faster than that.
I'll even shave my head.
Last time I checked, insurance doesn’t cover home remodels and modes of transportation like vans.
Of course, there will be medical expenses that insurance won't cover completely or at all. For instance, the first neurologist I saw in October ordered an ALS specific genetic test. Do you know how much those cost? Do you also know that medical insurance doesn’t cover that? They said it wasn’t “medically necessary” or some nonsense like that. I’m not sure how it works when a doctor orders something it isn’t “medically necessary,” but what do I know?
All of this money will go into its own special account and there will be a full accounting of the money and what’s being done with it just in case anyone is curious.
I’m not even sure how much to ask for. I just chose the amount based on what I thought we would need in the short run. I may have to adjust it up at some point. Whatever the case, please know that I appreciate every dollar you can spare. Just putting this page up has been difficult, and sharing it out to the world will feel like begging, and a Giddings never begs.
I know people want to help, and I wish I can find something for everyone to do, but sometimes just a few dollars can go a long way toward helping.
Why "Make Joe Great Again?"
Isn’t Joe already great? Damn right he is! His mind and his wit are just as sharp as ever. He still loves same things as he always has, just not as much as he used to. His video game playing has been reduced as the controllers don’t work in his hands quite like they used to. His ability to use the computer has been reduced as typing is a challenge in using the mouse is its own challenge as well. His telescope is too heavy to take outside and even if he could get it out there on a good night, the range of motion needed to operate it is beyond his ability.
Make Joe Great Again came about after acquiring his rollator walker. While chatting with Becky and their good friend Tim Harris, several jokes were passed around regarding how to decorate the walker to make it Joe’s. After several ideas were tossed around Tim dropped into the chat #MakeJoeGreatAgain. Obviously, this was a joke based on Donald Trump’s presidential campaign slogan. But Joe, who had been looking for slogan for fund raising and other purposes, really liked the way it sounded. He started using it on Facebook, and many people really loved it. After that, other people started to use it and it stuck.
So in this case, don’t think of it has Joe thinking he’s not great anymore. Instead think of it as a way for Joe to continue to be great while making other areas of his and his family’s life easier to deal with. Joe is always proud of how he provides for his family.
Who knows? Maybe something will come along that will allow Joe better! In that case making Joe great again would mean that due to people’s help made it through the tough times.
What is ALS?
ALS was first found in 1869 by French neurologist Jean-Martin Charcot, but it wasn’t until 1939 that Lou Gehrig brought national and international attention to the disease. Ending the career of one of the most beloved baseball players of all time, the disease is still most closely associated with his name. Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.
