ALS has affected almost every aspect of my life. It changes how I interact with my kids, friends, and family. It has made me more aware and appreciative of the time and blessings I have received. I am sensitive to the needs of others, but yet get irritated when people complain about trivial things. It has made my marriage stronger. It has made me bolder in the way I approach life. It has made me thankful for every day I am given with my husband and my kids.
As much as I hate this disease and what it is doing to my husband I have gained something from the experience. I have learned to ask for help. I never wanted to bother people with my problems before, but my friends have made sure that I let them know when I need something, anything. I have also learned to embrace life. The day after we got our first possible diagnosis of this disease, my husband and I booked a cruise. It was something we had always talked about that we would do “someday”. Someday may never come. We are only promised today. At the same time, we also recognize the importance of ensuring that our kids will be taken care of in the future. We take life as it comes, but we are also responsible with our money. My husband has had to learn the ins and outs of dealing with long-term disability and social security. Something that I never thought I would have to think about at 37.
My faith and relationship with God is how both my husband and I survive. God is in everything we do. My family is not the type to simply attend church on Sunday and then go about the rest of the week like nothing matters. We thank God everyday for the life we have today. I don’t question or curse God. I have yelled at Him, though, to tell him that I’m not finished with Tad and he can’t have him yet, just like any daughter would beg her daddy. Very well meaning people have told me, “God doesn’t give us more than we can handle,” but I don’t believe that. First of all, God didn’t give this to my husband. He knew it was coming, and he prepared us for it by making sure we were surrounded with a wonderful support group. He didn’t cause this to happen, but he will use the situation to teach us to draw closer to Him. Second, I can’t handle this alone. We are not meant to handle things like this alone. I lean on God in my dark times and I thank Him when times are good.
In May of 2012 we were able to attend the ALS Advocacy day in Washington, D.C. We actually achieved many of our goals. The group (ALS Association) wanted continued funding for research, to keep the ALS registry open, and ways to fast-track treatments through the FDA process. We didn’t get as much as we asked for, but we got more than in previous years. Another big goal is simply to raise awareness because not many people have heard of this disease. We met so many people like us who are dealing with the same things we are. It was a little overwhelming, but we will definitely go back this May.
The diagnosis for ALS is a difficult process because there currently is no test for it, but rather it is a diagnosis of elimination. The official diagnoses came in August of 2011 after about eight months of testing and eliminating many other diseases and causes. Recently some bio-markers and genes have been identified; so, hopefully that means diagnosis will be easier in the future.
Overall, my family tries to cope with this on a day-to-day basis. Our emotions tend to ebb and flow. Most of the time, we all get up and go about our day trying not to think about it too much, but the awareness is always there below the surface. My children (now ages six and eight) don’t fully understand what is going on all the time. They know that daddy is not working now and that he doesn’t walk the way he used to. He also can’t pick them up or play catch with my son. They don’t understand the full scope of this disease and that daddy can progress to being in a wheelchair, not able to feed himself, not talking, and eventually he could be put on a breathing machine. We cope with it through a lot of prayer, talking it out (sometimes yelling, I’ll admit), leaning on the comfort of good friends and family, and most recently we have started to see a counselor to help us with some of the issues that come up with the kids.
Finding a good doctor to help us deal with this was tough, but we didn’t give up until we found the right fit. Our primary doctor was very concerned and thorough. When he couldn’t get to the bottom of what was causing the symptoms, he admitted it was beyond his capabilities and referred us to a neurologist. The first neurologist we saw was very knowledgeable, but had absolutely no bedside manner. After he told us that there was a possibility of this being a motor-neuron disease, and he suspected ALS, he basically told us there was nothing he could do. Of course we didn’t find that acceptable; so, we went back to our primary and asked for a referral to the Mayo Clinic. The doctors there are fabulous and treat us like people and not a nuisance. Tad was able to get into a phase II clinical trial for an experimental treatment. The new neurologist also connected us with the ALS Association which led to us getting involved with the walks and advocating in Washington, D.C. The trial is over and we still don’t know if he was on drug or placebo because it was a double-blinded trial (meaning neither the doctor nor the patient knew if he was getting a dose of the real drug). We have also recently started to see a wellness doctor who is looking at overall nutrition, physical and emotional health, and ways to deal with stress.
How can people help? Visit the alsa.org website to find out more about what they do for patients, get involved in an upcoming walk (November 10 in Tucson with Tad’s Troop), visit treatalsnow.org.
The Sunday Girl 