Just a few points I’ve discovered during this journey that hopefully might help. Again these are just my opinions…
I’ve Been Diagnosed…What Do I Do?
Probably the scariest experience anyone can face is getting a diagnosis of ALS. Good doctors will do their best to ease this news, bad doctors will just tell you without any regard to your feelings, but both will do their best not to convey any “false hope”. Sadly by trying to save you of this they kill any “real hope” you might still have. If you get diagnosed with ALS here are a few of my observations that might help…
Grieve — Allow yourself to grieve
This is probably as real as life gets and hearing that on average anyone diagnosed with ALS lives three to five years is some of the scariest news you’ll ever get. It will take time to process so let yourself process. A week before my diagnosis and two weeks after I experienced the worst depression of my life. But through my faith and the love of my family and friends it passed. It will pass with you as well if you let yourself experience it and then allow yourself to let it go and heal. One motivation for me was I noticed that the more depressed I got the worse my illness felt. I felt like I was bringing it on quicker simply by being depressed. So after my three weeks I was done. I would still get mad at times or sad, but when I started feeling depressed I knew I had to change my attitude. The great author and motivational speaker Zig Ziggler once wrote “attitude controls mood, NOT the other way around” and I’ve never found that to be more true in life than now.
Decide — Fight or Flee
When the time is right make a choice, do I want to accept this disease and surrender to it or do I want to fight? Both are fine answers and no one should ever judge someone’s choice in how they want to handle this disease. When I was told by my physician that there was no cure or treatment for ALS I thought that the choice was made for me. So I played out that script in my mind of how this would go, maybe retire from my job (even though I have a family and mouths to feed), take it easy and enjoy what little time I have left. Remember I felt it was getting worse and that I might not have that much time left. But for me I had so many people in my corner asking me how I wanted to fight this. So in a way the choice was made for me by my faith, my family and my friends… I wanted to fight!
I made my decision to fight even though I didn’t know exactly how I was going to do that. It just seemed important that I made the decision. Like I said earlier it’s not “how” you’re going to fight this disease just that “you are”. It’s like drawing a line in the sand with your illness and stating to God that you will, through your faith and your own will to live, fight this to the bitter end.
Advocacy — Become Your Own Patient Advocate
This is probably one of the most important things I’ve learned since my diagnosis especially as it comes to ALS. Doctors are saying one thing, large pharmaceutical companies are saying another, naturopaths are saying something else…. where does it end and what’s the real truth? The fact is there’s a lot of “truth” out there and you’ll never know it until you take the reins on your own care and do the research yourself. Remember doctors work for you and not the other way around. They are there to consult you on the best course of treatment and if you don’t agree with them than seek out other physicians. Especially when it comes to ALS! The medical community offers no cure and limited treatments, but there are other medical fields that do try and heal this disease without a chemical solution.
Serve — Until You Can’t Serve Anymore
I have never found more joy or purpose in my life than to serve my God and the people I love. I find that the more joy I have in my life by serving makes me feel like my life is worth something and that makes me feel better. Serving my family, my employers, my church, even strangers, gives me a sense of fulfillment that ALS can’t take away.
God — Faith, Hope, and Love y’all!
This is the most important of all, YOU NEED GOD to fight this! You can’t do it alone and the Lord is there for YOU. I’m proud to say I’m a “holy-rollin’-bible-thumpin’-Jesus-freak” and everyone who knows me knows my heart and it’s for Jesus. I would love to give a more middle of road message to everyone and say seek whatever god you believe in, but I can’t. All my healing, strength, faith, hope, love is all from my Lord and Savior Jesus Christ and to tell everyone to seek something else is just something I can’t do. I urge anyone who is on the fence or anyone firm in whatever faith they believe in to read the scriptures I have listed (Old Testament, New Testament) on this site and see the promises God has for all us. Jesus is for everybody and so is his HOPE and healing!
Exertion + Rest + Food = Energy
When I first started my fight I noticed an interesting cycle form. I found that exertion with rest and food helped me to conserve as well as build my bodies energy, thus helping me to cope with fatigue. I also noticed that one or two without the other had the opposite effect. For example, if I exert and rest but not eat I start to get tired because my fuel reserves are gone. If I rest and eat, but don’t exert my body I start to feel stiff and lethargic. I need to move! If I eat and exert without rest I will run out of energy altogether. This is why to me exercise is so important as well as a good nutritional diet.
I also believe that it’s vital to try and get eight hours of sleep a night during the week and nine on the weekends. I still work a job during the week so sleep is really important. Sleep is also one of the best ways to heal your body. Just make sure if you can’t eat when you get up at least have lots of water. I try and drink about one gallon of water a day and I seem to drink about half of that in the morning. I have to remember that when I wake I’ve basically fasted for the entire 7-9 hours I’ve slept as well about an hour before I’ve gone to bed. The body needs some type of nourishment as soon as you wake up or you’ll sink fast.
Since my ALS was sporadic limb onset in my left foot I can’t speak to the bulbar type onset that affects speaking or eating. So the suggestions above might not be viable for others.
Medical Science vs. Naturopathy — The True Continental Divide
When I started my fight I never knew my search for information would lead me to such divided camps concerning this and may other illnesses. Or for that matter two camps with such disdain for the other. When you ask a doctor about a holistic protocol you’re trying out and you get comments like “snake oil” and “anecdotal” as to his opinion you start to sense the medical bias and arrogance that goes along with the medical field of study. Even in my own fight I’ve seen first hand the condescension between a clinical dietician and the nutritionist I consult with. The truly crazy thing is all of the licensed naturopaths that I’ve sought and read about all have advanced medical degrees as well as degrees in their own field of study. Many had left their traditional medical practices feeling let down by medicine and it’s preoccupation with chemical solutions and the sway of “big pharma”. Not to sound like a conspiracy theorist, but the subject of pharmaceutical companies and their influence on the medical profession and treatment plans is not something I take lightly or like discussing much. But to discount holistic medicine, treatments and curals that have been past down for centuries in place of a chemical one, is just narrow minded to me.
My own belief is chemicals (something man made) shouldn’t be used unless absolutely necessary and that our bodies are designed by God to heal. Vitamins, supplements, diet, exercise are all important to the body and help to replenish what it’s missing. My body doesn’t produce chemicals so why should I think it needs a chemical to fix something it might be deficient in.
False Hope vs. Real Hope
When diagnosed with ALS (a medically ‘terminal’ disease) doctors will try their best to convey the facts in a frank and straight forward manner so as not to give any “false hope”. After all, since ALS is incurable and there’s no medical treatment plan doctors are very cautious not to give any false hope that the patient will just pull through and make a recovery on their own. They also caution about looking on the internet and finding false claims of cures for ALS since there are none. So, after the diagnosis and the warning of false and sometimes very expensive cure-alls, one is left feeling alone with no hope and no means of finding out more about this disease you have. After a medical doctor, a learned man trusted in our culture, has told you so….
First and foremost, there is no such thing as false hope, you either have it or you don’t. When I left the doctor after my diagnosis I felt devoid of hope and felt like my sickness was getting worst (Proverbs 13:12). I realized that my REAL HOPE came from God, the true source of my strength and that to survive this illness I needed Him, thus I needed hope. Nothing, no person, no illness, no evil could rob me of God’s Hope whether I survive this or not. I’m going to have Faith, Hope, and Love no matter what happens (1 Corinthians 13:13).
As for searching the internet, I was never fearful of falling prey to any scheme that touted a cure for ALS, let alone an expensive one. I have no fortune to squander so there was never any worry there. But what I did find on the internet were others who’ve fought and beat this disease, holistic protocols used to fight back this illness, and information in the form of case studies and ground breaking new research which gave me hope every day to get and fight some more. But most of all I found a community of ALS sufferers who’ve banded together to fight, aid, and to comfort each other through this horrible illness.