When Mark and I enter the bathroom my disabilities come alive because I am leaving the security of my wheelchair and trusting Mark to assist me with my duties and get me back to my chair safely.
When Mark starts the transfer to the toilet he bends my upper body forward to help me out of my wheelchair. Because my neck muscles are so weak my heavy head falls forward almost hitting my chest. Lately my bottom jaw has been moving forward in front of my top jaw causing my bottom teeth to move in front of my top teeth. While on the toilet my head is so heavy it stays pinned to my chest the whole time causing my lower jaw to stay in front of my upper jaw. At times I thought that I was going to break my teeth so Mark suggested we put my neck brace on before transferring me from my chair to the toilet and my jaw problem was solved.
Another problem I have while on the toilet is that I can’t talk because my upper and lower jaws are clenched together and I can’t raise my head to talk so Mark and I have worked out some body language to communicate. When I am finished with my business I start rocking my upper body back and forth and he knows I’m finished. If I need to talk to him I groan and he knows I need to say something. He then raises my head and holds it up so I can talk. This may seem crazy but we have to do everything we can to communicate even if he has to hold my head up while I’m on the toilet.
Now that is what I call love.
I feel the need to explain some things about my mouth because things are different with ALS. I bite the inside of my cheeks and my tongue much more since I’ve had ALS. I suppose those muscles have weakened, too. I wear a bite splint when I sleep to help prevent me from biting my cheeks so much. At night or during naps my mouth dries out so much that the dryness goes deep into my throat and leaves my tongue and the walls of my mouth feeling like cardboard. I’ve never experienced dry mouth so extreme.
I’m amazed by how much our tongue does for us now that mine is no longer working very well. I can no longer touch my tongue on the insides of my cheeks. If I chew gum I have a difficult time keeping it in one piece because my tongue can’t maneuver it around. My speech is also challenged because of my tongue.
I can barely put my lips together to kiss or to blow a kiss. I can no longer blow out a candle or suck liquid through a straw. Food still tastes good to me but about the only things I can eat are pudding and Jell-O because I’m afraid of choking. I take only one pill orally with Jell-O and the rest of my pills are ground up and put through my feeding tube. I’m not really sure why but not being able to eat doesn’t bother me too much because I still prefer to sit with my family during dinner.
Once again having great care and lots of love makes my struggles smaller.
My body might not work like it once did but my mind is still the same. My long-term memory actually may be a little sharper because I have more quiet time to think. Having a sound mind and a lot of time to think can work against me sometimes, so I try to fill my time with uplifting people, movies and books. I try to fill my thoughts with prayer, stories for my blog and not feeling sorry for myself. One of the most intriguing things about my mind is that I’ve seen so many more God moments than ever before. These amazing moments may be small, everyday things I notice or they may be huge like watching my family rebound after my diagnoses and really start living again. One of my biggest joys in life is watching our kids soar through life and if they fall along the way watching them get back up and fly again. That is what I call a God moment. My will and determination are strong most of the time but once in awhile I crash and burn. Lucky for me I’m not down for long, probably because I’m able to see more beauty around me than sadness. The thing that helps the most is being loved.
I haven’t written much lately because I’m having a difficult time writing anything with substance because I don’t want to complain and sound like Mrs. Whiner. But if I stop writing now I’ll feel like I haven’t finished my story. If I give only my positive thoughts then I’m not giving you the true picture of living with ALS. I feel compelled to describe what is happening to my weakening body with the hope that someday my words may be helpful to others that have ALS but no longer have a voice or a Tobii machine to talk for them. I feel the need to describe what is happening to my body in the hopes that a caregiver will find something helpful for their loved one. With that being said I’ve decided to give you a more detailed glimpse into my physical world starting tomorrow. I will try my best to describe how powerful this disease is in taking over almost every muscle in my body but leaving my mind painfully aware of what is going on around me. I want to close by saying that this disease wins sometimes but love and a good sense of humor win most of the time and I’m grateful for that.