I want to first state, I choose not to address most negative comments because, simply, positive breeds positive, & same goes for negative. No need to breed any negativity in our lives. However, I do want to explain things to all of those who need further details to understand Steve's (our) journey with ALS.
For starters, we don't mind feedback from people, we opened ourselves up to y'all and that's what happens, we are cool with it. I do want y'all to know we do read every email, message, etc, I just cannot always respond to everyone.
This is a simple explanation of how Steve's ALS is different than others ALS, simply because EVERYONE is different and EVERYONE handles things differently so this is Steve's (our) story.
Steve was an athlete his entire life, which led to numerous injuries, including head trauma and broken bones. Steve was also jumped while in college by some gang members, where those that know him, can say he never fully recovered from. We believe Steve's ALS is trauma induced.
Because of that Steve has chronic pain, so yes he does take a lot of pain medications. To those who question why we would give Steve pain medicine despite their loved one never having pain---again I say Steve is different. He has real life, can't make that up, extreme pain---so yes I will give him as much pain medication as I medically can to keep him comfortable while not doing damage. Yes it helps. No it doesn't have ANYTHING to do with the further complications.
After Steve got his feeding tube placed in Feb 2013 he got a severe infection in his feeding tube which was the beginning of the infection phase. Once you get a severe infection and you are already compromised it becomes very difficult for it to go away fully. Come April & May we all know Steve was hospitalized with severe pneumonia, he had to get an emergency tracheostomy, & there began our respiratory problems. July is when we discovered Steve grew infections in his lungs. Despite all the natural remedies, the slew of antibiotics he has been on since then---they are colonized. Meaning they will never go away. Now Steve is resilient and lives with these infections everyday. Some days he feels great & some days he feels terrible. We take full advantage of those great days & we let him rest on those not so great days. Since the feeding tube was placed Steve had begun large problems tolerating feeds. I even made our own food that was a special formula for sensitive stomachs, but the problem only got worse. Come October of 2013 Steve began to no longer be able to take food by stomach AT ALL. Anything we would give him, he would throw up, aspirate, get pneumonia, and lose more weight. We got him placed on IV foods, tried slow feeds up until Feb 2014 but it only ever made him sick. It's called gastroparesis. No it doesn't happen to all ALS patients, in fact hardly any. Yes it did happen to Steve. The same time Steve became vent dependent. Upon initial diagnoses Steve did not want to be on the vent full time. Yes he changed his mind. (yes I'm thankful he did) Now, due to him only receiving IV nutrients he is malnourished. He has developed anemia of chronic disease, where he is no longer able to make red blood cells. Steve will need frequent infusions. This has it's own share of risks but to put it simply is that one day he will not longer be able to receive a transfusion. We have idea when that will happen, nor do we have a way of determine when that will be. Steve has experienced frequent UTI's since day one of diagnoses. If you research you will see that the bladder gradually becomes weaker to where you can't fully empty, that will breed infection. Add Steve having infections internally already that will never go away, add a catheter to help him to void completely, you get an infection festering paradise. As of now Steve is unable to urinate without a catheter. Steve will have infections always and will be on antibiotics always, but Steve can live with infections if we continue to be diligent to stay on top of them.
Now that you have the abbreviated version, let me touch on the most important part of this story. Steve's courage and strength are amazing. Not everyone has it. He wants to live as long as he physically can & is willing to go through a lot to be able to stay alive. He CHOOSES every day to fight, no one else decides it but him. While Steve sleeps a lot more these days and sometimes forgets getting medicine or small things here or there, he is of VERY SOUND MIND. I will honor every decision Steve wants to make, ever. Therefore, for those who question why we are still keeping Steve alive, know this; Steve is amazing, we live an amazing life, and he chooses to stay alive, so therefore I do everything I can along with our amazing medical team to keep him alive.
Thank you to those who understands, supports, and respects our fight. Thank you for those who can be brave and spend time with us despite how heavy things can be at times. Thank you for those who know we are full of light, life, & happiness literally everyday that we have another day together & for those who help keep that light shining. Not everyone will handle a diagnoses of ALS like this & that is okay. Because the beauty is it's Steve's life & he is choosing to live it how he wants. So I hope we all honor not only his choices but everyone else who is faced with this awful disease, because unless you are in their shoes you will never know what you would choose. I also hope you never have to.
Thanks, much love, light, & positivity for y'all