It starts on day one. What you are told will shake you to the core. There is no mincing of words. “You have 2-5 years and there is nothing we can do. ” I know that for me, it left me rather numb. I was expecting it, but it just didn’t seem real. From that day on, the life you have left is filled with intimidating circumstances and choices to be made.
There is so much to take in. No one is ever really prepared for it. I guess maybe a few people may be. I surely was not. So, what do we do? We have to face up to it all. It all seems so insurmountable. Coming at you from all sides. I don’t intend on trying to tell anyone how to handle it all. It is much too complex for each individual. I will just address some common issues and throw in some choices I made. Maybe some opinions on problems I’ve yet to face.
Coming to terms with your diagnosis. This is probably first and foremost. You will have difficulty proceeding with the handling of your affairs if you are not in the right frame of mind. Many people are not able to get past this point, unfortunately. It took me a little while. I still have moments of doubt, but for the most part, I have accepted my path.
Getting your affairs in order. Talk about intimidating. I was diagnosed at 40. I was in my prime. Preparing for the end was the farthest thought in my mind. But there I was. So many things to consider. Did I have sufficient life insurance? Managing the finances. Ensuring my wife had access to everything. Giving her legal authority to make decisions for me should I not be able. Discussing my wishes with her so that she may execute them. There is certainly a lot to cover. Take the time to do it and do it as soon as possible. It goes a long way in giving you peace of mind.
Medical decision can be rather frightening. Do yourself a favor and do your research. Ask your medical providers, do research through reading but be very cautious with seeking advice through social media. Don’t get me wrong. There are very knowledgeable folks eager to help, but there are far more who are uninformed and misinformed. That being said, do what you think is best for you. We all have differing opinions about this and that. So, trust your instinct. Be logical, though. I hear people make some ill thought out proclamations, sometimes. Especially when it comes to things like feeding tubes and traches. To each his own, but be mindful in your decisions. Thinking things through will make it easier on all involved.
Fear of what is to come. It is completely natural. No one looks forward to the changes that are inevitable. We are not in control of how and when ALS will affect us. So I just don’t fight it. Not that I give in. I make the adjustments that are necessary for me to live my life. Again, I didn’t choose this. It is not easy, but I refuse to let it keep me from enjoying the rest of my days. I am not ashamed of what people think of me. Take your ass out there if that is what you want to do. Don’t give a shit if you get looks. If you are content to spend your days in solitude, go for it. the Be happy. I am in my wheelchair with my Trilogy ventilator on and my feeding tube showing through my shirt. If the time comes, I hope I can rock that trache tube. Bottom line, if it fits into your life, don’t be afraid to do it.
One thing that we had to really work up to was engaging with the ALS community. It is one thing to deal with your own life. Especially when you are new to this world, stepping into a group of patients who are farther in progression is very intimidating. It took me almost a year to be comfortable enough to be in the presence of my fellow ALS sufferers. It was that fear of seeing the path I had before me materialized. It would no longer be what I heard or read about. It would be real. I don’t regret being apprehensive. I did it when I was ready. Now I thoroughly enjoy every chance I have to interact with other families. I try to always carry a smile. Admittedly, I can’t always control that because of PBA. I digress. I engage and smile to hopefully ease their apprehension. And maybe, just maybe, create a small sense of joy or normalcy when all seems so grim.
I wish I could think of every instance that this disease sent a shiver down my spine. It is a practically never ending juggernaut of despair and Intimidation. But we can be more resilient than we ever realize.