Legs are relatively easy to replace with equipment and ramps. I use a power chair, shower chair, patient lift, lateral rotation bed, and a van with a ramp and hand controls. Once I’m showered, dressed and lifted into Ruby Tuesday (my power chair) I have a semblance of independence. I can drive short distances, go to the store, go for a roll, or meet a friend for lunch. This is relatively doable and has been my life for more than three years.
Life without working arms and hands is going to be a bit more complicated. My ALS progression has remained relatively slow. Yet, I’ve reached a point where I’m losing important function in my arms and hands.
Imagine an elastic band wrapped around your chest holding your arms at your sides. Now try to move your elbows away from your body. At the same time, a strong person is pushing down on your shoulders. Now pretend you’re eating a bowl of cereal and the same strong person is pushing your hand down while you are trying to reach your mouth. This is what it feels like to move my arms and hands. So simple tasks like putting a jacket on and off or brushing my hair are difficult, if not impossible, and physically exhausting. I’ve limited my driving to only a few miles during the day. I haven’t had any close calls while driving but I’m being proactive and not taking a chance of having an accident caused by fatigue.
I watch my 2 year old grandson gradually master the use of his hands. As an infant he would try to grasp a toy or reflexively grab my finger. Then he could pick up a Cheerio and find his mouth. Now he can manipulate puzzle pieces and draw circles with a crayon. As my hands atrophy and lose function, we are traveling the same path in opposite directions. We will meet soon on the continuum.
Tasks requiring fine motor skills are eluding me. I can’t open a shampoo bottle or squeeze a tube of toothpaste. Eating in public is quite embarrassing as I eat like a toddler hoping the finger food makes it into my mouth on the first attempt. Last night I tried to put a handful of vitamins and meds into my mouth, like I do every night, and completely missed. Not one pill made it to my mouth. So I tried again successfully with a two-handed approach.
Like the equipment that replaces my legs, I have some new technology that will replace my hands. Meet Tobii.
Tobii is a speech generating device that can be controlled with my eyes. The bar below the screen has a camera that follows the reflection of light from my retinas. So my eyes move the cursor like a mouse. I can navigate in the apps provided, make a phone call, use any Microsoft program, or access the world wide web. Pretty amazing.
Tobii joined the family a few weeks ago. There’s quite a learning curve to achieve proficiency and I want to make that happen before I’m completely dependent upon it. For now I can still type with my shaking fingers, but my days of typing over 100 wpm are long gone. So I practice typing with my eyes in the evening when my hands need to rest.
I met Obi the robotic feeding arm last week. We practiced by eating Cheerios and it was love at first bite. My occupational therapist is helping me make Obi a permanent part of the family. She is also working on a voice-activated control for my bed so I can operate the 13 functions without using the remote. I’m forever grateful to the VA healthcare system that generously provides all my technology and equipment. Thanks to the VA, I am able to live the healthiest, safest, most engaged and independent life possible. Many people with ALS rely on medicare and do not have access to this life-giving technology.
The past few months have been emotionally difficult as I process the grief of my diminishing independence. Spontaneous tears. Racing thoughts bounce in my head:
- I don’t want to live anymore
- I can do this with the love and support of my husband, family, and friends
- I want to quit everything and hide
- I can stay engaged in teaching and writing
- I’m a burden to my husband and children
- How will I cope with total paralysis?
Then I noticed that my thoughts are all about me and this self-focus is not emotionally healthy. It’s time to return to gratitude, be present, and engage at whatever level I can at the moment.
I’m Forgiven and Free and grateful for my family and technology