The not so fun stuff...reality

Ok. So, I know this stuff isn't fun to talk, write, or hear about, but...this is the reality of how this disease has affected mom. She's had nerve tinglings as far back as 11 years ago, so all things considered, this disease has been slower than with most people. There are 2 kinds of ALS...one that affects speech first [bulbar kind] and one that affects the muscles in the arms and legs first. This is the one mom has. She first noticed fine motor loss in her left hand...then watched, helpless, as her muscles slowly atrophied. Then, her left arm started to go. At Christmas of '06, she noticed slight dragging of her toes and hyper-extending knees, and was concerned. Now? Her left arm is affectionately referred to as "jello arm"-she can only lift her left arm a wee bit, with her shoulder. We usually move her arm for her.

Around that same Christmas, Mom had started losing her balance and falling. Now? She can stand up with assistance...and as long as her chair is locked behind her, she can lean on the kitchen table and stretch her legs. Last week? She could stand up by herself. Not so anymore. Also, her lower legs are incredibly swollen. She sleeps in a hospital bed with her legs elevated, but as soon as she's been sitting up for any length of time, the swelling returns. This is caused in part by the lack of muscle in her legs, and part from not walking and exercising the muscles. She said it feels the same as when your feet first fall asleep and then tingle when waking up. But, for her, the tingling never stops. This causes incredible discomfort. The hardest part of this disease, is that every single day something else changes. We never truly know what to expect.

ALS causes an excess mucus issue. It's not in mom's lungs, so our cool cough assist machine doesn't help her. This stuff sits right on her vocal cords, and causes her to cough all the time. It's sticky, so coughing doesn't always work right away. This constant coughing has made her voice incredibly weak. Her speech is starting to slur as her face and neck muscles get weaker. Mom's head feels heavy and hard to hold up, and she can only sit up for about an hour at the table, then needs her electric wheelchair where she has a back and head rest. The problem there, is that she can never get comfortable. She's gotten quite tiny, and no one in our family was blessed with much to sit on in the first place!! She gets hot spots on her seat from sitting too long, and is constantly having to change positions.

The most recent change, other than no longer being able to stand by herself, is her diaphragm is getting weaker...much weaker. When she coughs, we have to place our hand on her chest, by her diaphragm, and push up with each cough. This mucus is always a problem. Mom can be sitting, reading, and enjoying her book and the next thing you know, she's choking. The fear of choking is a very real fear for her. Because of the severity of this, we can never be very far from her. She can't talk very loud, so when she needs us, we have to be able to hear her cough. Though she can still talk, it's hard for her to talk very long, as her diaphragm is so weak...she just gets so tired.

Oh yeah...forgot one! Dry mouth. When mom isn't struggling with this mucus stuff at night, she gets a horrible dry mouth. If she's sleeping, this wakes her up, she gets a drink, then dozes again...only to wake up in another half hour. And no, I'm not exaggerating the time there! There are some nights mom actually sleeps the night through!! Most nights, she gets between 1-3 hours...the rest is spent spitting/coughing or drinking. After these nights, she is so incredibly exhausted, she can hardly function. So, we nap as much as possible, which also helps with her swollen feet. We have finally realized we can't do this alone...even with Arlene and I both working around the clock...so we have night aides full time now. I still get up if they need help lifting mom if she needs to get up or better positioned [I'm younger...can handle lack of sleep better than Arlene can!], but for the most part, I'm now getting at least 5 hours of sleep!! I feel like a new parent...sleep is very precious and keeps me pleasant! =) Now, if I could just give mom some of my sleep...

Mom isn't afraid to leave this earth and us kids behind...she grieves this. She isn't afraid to die, in fact there are times I know she's praying to go in her sleep. What she is afraid of? Not of dying, but of the process of getting there. As she said this morning, "this slow dying is what is so hard...it's hard to sit around and know I'm dying slowly, when I'm ready to meet my heavenly Father. I want to enjoy my time left, and yet I'm too miserable to truly enjoy life. Every day is so filled with discomfort, it's very hard to keep positive."

Yet another aspect of this disease is tears...every patient cries...a lot. Anything can trigger the tears; a thought, word, memory, song, scripture, seeing her adorable grandson...anything. The nerves are basically "wacko" and she has no control over them. The tears aren't always a sign of depression, they can be joy as well...but this creates yet more mucus, a stuffy head, and yes...more coughing and choking. Poor mom. I personally think she's doing absolutely wonderful. Her ability to stay positive amazes me. I know she doesn't feel strong, but I don't either...each day we rely on God's strength, and that's what keeps us going...and the hope that the BEST is yet to come!