“What did you say?”
Toto, we aren’t in Kansas anymore!
The reality of this awful disease has been smacking me in the face lately. Every where I turn, there is a reminder that my disease is progressing. I can’t escape it. The bipap, the suction machine, the cough assist, the thickener, lengthy meals just trying to move the food to my teeth to chew, drooling, and most importantly, every time I open my mouth to speak. It’s still rather shocking to even me, I can’t imagine what others think. It sounds so utterly normal in my head, but then out it comes….a garbled mess, the quizzical looks, the “I don’t want to ask her what she said” nod of understanding. People, I know when you don’t understand me, so why don’t you just ask me to write it down?!?
Me and Jesse have been arguing more than normal. We don’t want to, I know, but it is becoming so frustrating. I know he is safe for me, so I guess I lash out more at him. It’s not fair, I know. I don’t mean to. But I do. Grace and forgiveness are abundant in my home right now. Thank goodness for cleansing tears to wash away some of the frustration.
I attended my ALS clinic appointment last Thursday. I will start with the positive. In the waiting room I met someone who TOTALLY understands me. I was talking to my sister and a woman across the room made eye contact as she brought her hand to her heart. She then began eagerly digging through her bag and found her boogie board. (for those of you who don’t know what a boogie board is, it is a board that you can write on and push a button to erase. A great tool for those with bulbar ALS). She crossed the room and we embraced. There was something beautiful about it. Knowing she knew EXACTLY what I’m going through. We quickly began using our boogie boards to speak to each other. The respiratory therapist had to practically peel us apart to call me into the room for my appointment! Luckily, we were able to exchange numbers and I was overjoyed to make a new friend!
My clinic went fairly well. My respiratory (which I am most worried about) was still in normal range. It went from 103 to 95. (Normal is 80-100). This is good news. I was really striving for the 100 range, but for some reason my stupid epiglottis was not cooperating and impeded my ability to breathe properly. The perfectionist in me was not happy with a 95. LOL. Next my doctor arrives. She indicated that she was surprised that my speech has declined as much as it has since my last appointment. She gingerly approached the subject that although she cannot say for certain, the Radicava (infusion) may be the culprit. She said that based on my previous trajectory of decline, she was concerned that the Radicava may not have slowed progression as it is purported to do (and may possibly be the cause of increased progression). Unfortunately, because ALS is such an unpredictable disease, she cannot say with certainty that the Radicava is the cause of the accelerated decline in my speech. It could simply be my rate of progression. Surprisingly two of her other ALS patients had clear decline on the treatment and she stopped the infusions on them. Since she cannot determine for certain with me, she left the decision up to me on whether or not to continue. Later that evening, Jesse and I decided to stop the infusions for now. My Dr. did say I may resume in the future if I choose to.
Then the dreaded speech therapist and nutritionist enter the room. Ugh. I know this is the hardest part of the appointment. Discussion and examination ensue. The topic of a feeding tube comes up. Apparently, ALS speeds up your metabolism. As it now stands, I am still eating and drinking and trying to maintain my weight. I’ve had to add a daily Ensure drink for extra calories. But because my tongue and soft palate have weakened, everything I eat or drink becomes a challenge and takes a lot of work to manage. I may be eating less due to the laborious nature of chewing. Coupled with the increased metabolism they are worried about weight loss. Since I’m small, a small amount of weight loss of 5-10 pounds could be significant. Additionally, I’m beginning to dread the idea of eating or drinking on some days. And weight loss is a no-no with ALS because it can trigger faster progression. I asked them their professional opinion on the feeding tube because it sounded ludicrous to get one now when I’m still eating. They tell me they would suggest it now, to take the pressure off of the labor of eating. They explained that I could get the majority of my nutrition and hydration from the tube and eating can become more pleasurable. It would also allow me time to get used to using it before it is completely necessary. It is a difficult decision. I thought that when the time came I would not have a problem with it. I am familiar with a feeding tube from my dad having one. But I am having a hard time. I just don’t know if NOW is the right time for me.
The rest of the appointment was thankfully unassuming. I don’t need OT, PT, Psychiatry, etc. I am so thankful that this awful disease has not begun to rob me of any physical use of my body. See…..even I can find gratitude in even the most dreary of places!
I have been spending a lot more time alone, which I don’t mind. When I am surrounded by quiet and don’t have to talk, I feel normal. I am able to forget, for a bit, that I have ALS. I keep busy. I read, write, pray, craft, cook, sew. I enjoy these times the most because I am able to commune with God in my head and I don’t have to feel the frustration of difficult communication.
I miss going through the drive thru when I get a craving for fast food, buying a coffee when I’m by myself, and talking on the phone. Right now I’m getting used to my assistive tools with family, but they are more challenging in public. My sister Stacey is going to “help” me brave the coffee shop to order with my assistive talking device to get me more comfortable with this. She has been my ever present rock throughout the past year and a half. I am so thankful that God has allowed her to walk with me on this journey.
I have so much to be thankful for amidst the heartache. I have THREE beautiful grandchildren that I can hold and love on. Two of them are brand new granddaughters, Grace Kelly-Ann is 2 months old and Mila Beverly is 2 weeks old. My big boy Noah Riley is 4 years old and a constant joy to be around. These little people are such precious gifts to me and Jesse! I am thankful for the friends who have hung in with me, providing emotional support and prayer. I am thankful for a husband who carries not only his burden, but mine as well. I am thankful for my children who make family night dinners meaningful and special.
Please pray for us. Jesse is considering taking a leave of absence so that we can get control of the new normal and alleviate a bit of stress. Pray that God will reveal Himself to us daily, give us strength, peace, joy, and laughter. That we won’t let ALS defeat us but that we will live each day with courage and love. That we will learn to communicate better and it won’t be such a burden. And that most of all, we will create lasting memories and a legacy for our children and grandchildren.