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ALS Worldwide
May 12, 2016

Our ALS Story (So Far)

We are Don and Berkley Akers, from St. Charles, Missouri and have been married for 5 1/2 years. We’ve been able to enjoy a lot of life in such a short amount of time. We’ve traveled to numerous locations within the US and outside of our home country, and each of those trips holds a special place in our hearts. We are also avid St. Louis Cardinals fans. Whether we are at home, on the road or at the stadium, seeing the games are a fun time to spend together. While we have enjoyed our trips and going to games, we are currently on a journey of what feels like a game of mazes and we’d like nothing more than to get off this road and out of this game.

Unfortunately, that doesn’t appear as if it will happen. Here is how this trek with ALS began, as told mostly by Don. 

I’m a Technical Fellow at Boeing, in the area of embedded software architecture. In October, 2014, I was giving a presentation and realized that I wasn’t speaking at the same speed my brain was working. After I got home, I asked Berkley if she noticed anything different with my speech, but she said it sounded the same to her. I realized that it wasn’t necessarily an audible issue as much as it was a small delay in what I wanted to say vs. what was coming out of my mouth. I was under an enormous amount of stress due to some family situations and thought perhaps that was causing this ‘lag’.

I didn’t think much more about it until a few weeks later when Berkley told me that she noticed my words were slurry – like I’d come from the dentist and had Novocain wearing off. After seeing our primary care doctor and one neurologist, we were eventually referred to a neurologist at Washington University in March of 2015 and had our first appointment on April 30, 2015. At that time we were told that I had something going on with my motor neurons and that in all likelihood it would turn out to be ALS.

You hear this diagnosis and if you know what it means, you almost immediately get the feeling that you are going to spend the rest of your life with a large weight tied around you. The doctor left the room, Berkley got up and closed the door and we just hugged each other and cried. Berkley had feared it was ALS from the start (although she never shared that), but for me, that was the furthest thing from my mind. So I think I was more shocked than she was. I truly felt worse for her, as her first husband had died suddenly and unexpectedly in 2007, and I had resolved to not let myself pass before she did, so that she didn’t have to live with being widowed again. Yet, now with this diagnosis, I see that is most likely going to happen, and I fear for her, both in watching me progress with the symptoms and having to be the role of the caregiver, which in many ways, is much harder than the one with the disease. It doesn’t seem fair that she will be able to give talks on the difference in grieving the loss of one husband who died unexpectedly to watching your second husband slowly loose his abilities due to this insidious disease. But this is the hand we were dealt and we will face it one day at a time.

I am still driving and working and we certainly still have fun and laugh. I think one of the things I miss the most is the ability to play basketball, which I’ve done all my life. My days of weaving and going around screens, turning and making a three pointer are over, and that is hard to come to terms with. As for my issues with speaking - I was able to do voice banking and downloaded a synthesized version of my voice to my augmented communication device. However, if I could go back in time, I would have done the recording when my voice was still strong. Even though it’s not perfect, I do like the fact that I can say most things with that device and it is in my voice. I think it also means a lot to Berkley and other members of our family to know that they will still be able to hear ‘me’, even when I can no longer use my own mouth to speak.

We used to walk in our neighborhood almost nightly, but I cannot do that now – at least with any pace. So, we found a used golf cart, and we often go carlking, (cart and walking), often with our dogs (riding or walking). Of course, many of our neighbors have no idea what is going on, so I must look incredibly arrogant, making my wife get out and walk! Or, we have heard people ask if I was her pace car. But that’s what you learn to do with a disease like this – you accept, you adjust, you modify and you keep going.

Of course there are days that are harder than others. When a new symptom shows up it’s always a bit scary and unnerving. It seems just about the time we get used to things being the way they are and have adjusted to it, a new symptom comes along or intensifies, and that can feel like a punch in the gut. Berkley said those days or weeks can be rough and she realizes she continues the process of grieving what we are losing and what will be coming. The ability to grieve what is happening is important. If you just try to act like everything is fine, it can mean you are stuffing a lot of emotions and they can come bursting out of you, like a volcano ridding itself of its molten lava. We each deal with this differently and we’ve had to learn to allow the other to deal with things in their own way and allow each other some space when needed.

As with all things in life, there are some positives with having ALS, although I would trade them, as I am sure any of us would. I’ve learned that I have one tenacious wife and that she will advocate for me harder than anyone else I know. It was through her searching, that we found ALS Worldwide. Skyping with Sarah was the first time either of us felt we had some way to battle back against this disease. We learned about B-12 and other supplements that we have begun using. When you have a disease that has so few options for medical intervention, you feel as though you are simply marking time until the end. But once you have some ways to potentially lessen the effects of some of the symptoms, you gain a feeling of being empowered.

ALS Worldwide has helped empower us and we are eternally grateful. Sarah was even kind enough to set up a private Skype session with Berkley so they could talk about some things without the awkwardness of having those discussions with both of us at the same time. I know that meant a great deal to Berkley and really helped her get a better grasp of some of the aspects of this disease. Through ALS Worldwide, we have gotten to know others who are walking down this road as well, and from whom we can learn. Although none of us would like to have this, a bond exists between those of us who do, both for the patient and the caregiver(s).

It can ease the mind to hear of how others are dealing with different medications, feeding tubes, home modifications, wheelchair and transportation issues, as well as so many other things that we deal with multiple times a day. It is as if we are on the same team now, no matter where we live, what sports teams we follow, our race, our religion or any other discriminator. We share a common bond and there is great comfort in helping each other, encouraging one another, praying for one another and even comforting one another in times of grief. It simply helps to talk to someone who can relate with what you are dealing with and truly cares for you.

As I close, our story is still being written. Although it is a scary time for us, Berkley and I, as well as many others that are believers, know that we are secure in our faith. Recently, our church asked us to do an interview based on suffering. (This is not the interview any of us would want to give) It touches on ALS and our story. We hope that you find some comfort in the message, and we are always happy to communicate with anyone else that would like more information. We have appreciated learning more and more about others!