Progressing & Adjusting

Alpha Lima Sierra is a progressive motor neuron disease.  Webster defines progressive as increasing in extent or severity. So, this disease will continue to increase in extent and severity, meaning the Big He’s muscles will get weaker and weaker till he no longer has control of them. We are already experiencing this. So what do you do about it? Well, what I want to do is scream, throw a wall-eyed fit and use every ounce of my being to will this disease away. But I can’t, there is no cure. It won’t stop. At least not until there is a cure or management found. We pray that one is out there and we will see it in the very near future.

So we adjust. We have slowly been adjusting for some time. The Little He does most of the yard work now as it is too much for the Big He to do. We are doing more of the things that once the Big He did for us.  Until now, its been little things and the adjustments have been fairly easy. At least for the boy and I. The Big He is having more difficulty with this and I get it. You know the thing with this disease is just as you get use to something then the disease gut punches you and takes your breath away. Literally. The new adjustment we are making is in the Big He’s breathing. As this disease weakens the muscles, a very important one, the diaphragm begins to weaken. People with ALS (aka PALS) will ultimately have respiratory issues due to this weakened muscle because the diaphragm helps move air in and out of the lungs. The Big He has started to have a drop in his respiratory function meaning its harder for him to catch his breath especially at night. He is progressing. We will be getting a BIPAP machine which is non-invasive breathing assistance.  This machine will hopefully stabilize things for awhile. He will progress and will need the use of the machine more and more. Let’s face it, these things happen so fast and we are just not ready for these changes. Who really is I guess. It may take us some time to digest and understand what is happening and make this new change fit into our daily lives. But we adjust and make it fit.

There are two choices we can make during this life with ALS…we can adjust to the changes and figure out how to make them part of our new life or we don’t. Right now, our family is not ready for “we don’t”.  Right now, we are going to deal with the progression. There may be kicking and screaming from all of us, but like with everything our family has encountered, we will adjust.

So as the Big He likes to say, he is gonna just lay on the couch, watch T.V. and progress. And we will adjust.

All my love,

The She

 

 

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Be Still and Listen

Today in church, our Pastor did something different during prayer time. Instead of asking for prayer requests, he asked for joys, you know the good news. As I listened to him, all I could think about was what was there to be joyful or grateful for.  Tdsc_0115he love of my life has Alpha Lima Sierra. My family is in crises mode and my heart is sad. This happens. We are up, we are down. Depends on the day, night, hour or minute we have had or are having. It’s hard and takes a lot of energy to not be in this mindset. For me, not sure if its just my nature, because I don’t recall being like this before we lost the twins and our baby boy, but I tend to be a planner now AND worrier. So my mind is constantly going. Explains why sleep doesn’t come easy for me these days. When we were asked to share our joys, I closed my eyes and asked Him what are my joys. Sometimes you have to stop talking (the chatter in my head), be still and listen.  It was then my heart heard the answer to my question. Actually several joys filled my heart.

The Big He is still walking. He is slower, but he still walks. He can still use his arms and hands. He can hold my hand (which I absolutely love) and still give hugs. He can still do things with the Little He. The Big He can still talk. He can still tell Little He and I that he loves  us. The Big He is still breathing on his own. These are all HUGE in an Alpha Lima Sierra life. His progression has not been super quick. Thank you Lord. Thank you for these blessings.

So, while I did not share my joy/blessings at church today, I wanted to share them now.  I know me and I know that the fear and stress that comes with this disease will take center stage in my thoughts again but I also know I need to make it a point to stop, be still and listen too.

All my love,

The She

I wanted to also encourage you to see the movie Gleason if you have not. We saw it last weekend and it is an amazing look into world of ALS. Gleason is available through Amazon and iTunes.