As a person with ALS living in a nursing home, I encounter much ignorance and get homogenized care. That is not saying my caregivers are stupid. On the contrary, they are intelligent and highly skilled. The problem is that ALS is not your typical disease. To effectively and safely care for us, one must have a thorough understanding of ALS disease processes.
ALS destroys nerve cells in the brain and spinal column that control muscles, muscles that control arms, legs, eating, and breathing. As these nerve cells die, they cause itching, numbness, spasms, involuntary movement, varying degrees of pain, and, ultimately, paralysis. It's extremely important to understand what is NOT effected by ALS. Mental competency is NOT effected. Although, there is growing evidence of possible emotional involvement. Sensory is not effected, that includes the senses of touch, smell, taste, sight, and hearing.
In my opinion, caregivers who employ critical thinking skills fare far better with ALS patients, especially, as systems fail, particularly speech. One of my worst situations I've been in is needing urgent care, like the use of the cough assist machine or suction and not being able to ask for it. The caregiver that takes the initiative to learn non-verbal cues in paralyzed people is the one I want.
To know that the ALS sufferer is losing control over their muscles is much too simplistic as to be helpful. Loss of control of one's muscles is not immediate nor absolute, thus the weakening or loss of individual smaller muscles produces myriad problems (or challenges), sometimes on a daily or hourly basis, particularly, as the disease progresses, when muscle atrophies cascade. For example, as the small muscles in my ankles fasciculated (spasmed) then died, I became increasingly unsteady on my feet, sometimes tripping and falling, requiring ever-increasing mobility aides. What came with ALS attacking this region, was random shooting pain, occasional itching and swelling, random movement, and decreased usage.
The results are far more complex with breathing or eating, which is probably why experts become so much more necessary. Even so, there is a lot they don't , or can't, tell you. With regard to eating, the speech therapist's wheelhouse, as muscles died; fasciculations caused gagging and itching; twitching caused distraction; the shape of my mouth changed, causing speech changes; my tongue changed size, shape, and function, affecting speech and the ability to move food inside my mouth.
Furthermore, the details regarding eating are many and in a constant state of flux. For example, regarding myself: It is best to minimize distractions. (Including caregiver interruption.) Advanced dysphasia diet, requiring foods to be chopped, limited salad access. No mixed textures. (Liquid or solid, not both.) No thin liquids. Check for pocketing following meals. Floss and brush teeth at least once per day.
Even this level of detail isn't enough. Jello is not a good idea. Ice cream could be a problem, not thus far. Limit milk and milk products as they may increase mucus and secretions. Stringy vegetables are problematic to swallowing. Beware of skins on fruits and vegetables. (Peppers, potatoes, apples, etc.) Canned fruits are safer than fresh in some cases. Sour, tangy flavors stimulate salivation that I'm ill-equipped to manage.
What's worse? Any of this can change day-to-day or meal by meal. While I am responsible for ordering foods amenable to my condition, I cannot anticipate changes in food preparation. Like tonight, I ordered green bean casserole but received green beans sans casserole. Unfortunately for me, now I cannot eat it. Nothing is provided to allow me to form a bolus. I also ordered creamy orzo; rice and it's pasta cousin, orzo, demand caution. Though the orzo was creamy, again, I couldn't form a bolus. Two thirds of my meal ineligible for my consumption!
Do you get my drift? ALS is a moving target and variables in caregiving and food preparation add additional hurdles. It's important for continuity of care that, unfortunately, healthcare in a facility cannot give. With ALS, tribal knowledge is important, particularly after speech is gone. And, it's important to have someone around to vigorously advocate for us when we cannot do so ourselves Because, let's face it, each day, we're always learning something.
ALS destroys nerve cells in the brain and spinal column that control muscles, muscles that control arms, legs, eating, and breathing. As these nerve cells die, they cause itching, numbness, spasms, involuntary movement, varying degrees of pain, and, ultimately, paralysis. It's extremely important to understand what is NOT effected by ALS. Mental competency is NOT effected. Although, there is growing evidence of possible emotional involvement. Sensory is not effected, that includes the senses of touch, smell, taste, sight, and hearing.
In my opinion, caregivers who employ critical thinking skills fare far better with ALS patients, especially, as systems fail, particularly speech. One of my worst situations I've been in is needing urgent care, like the use of the cough assist machine or suction and not being able to ask for it. The caregiver that takes the initiative to learn non-verbal cues in paralyzed people is the one I want.
To know that the ALS sufferer is losing control over their muscles is much too simplistic as to be helpful. Loss of control of one's muscles is not immediate nor absolute, thus the weakening or loss of individual smaller muscles produces myriad problems (or challenges), sometimes on a daily or hourly basis, particularly, as the disease progresses, when muscle atrophies cascade. For example, as the small muscles in my ankles fasciculated (spasmed) then died, I became increasingly unsteady on my feet, sometimes tripping and falling, requiring ever-increasing mobility aides. What came with ALS attacking this region, was random shooting pain, occasional itching and swelling, random movement, and decreased usage.
The results are far more complex with breathing or eating, which is probably why experts become so much more necessary. Even so, there is a lot they don't , or can't, tell you. With regard to eating, the speech therapist's wheelhouse, as muscles died; fasciculations caused gagging and itching; twitching caused distraction; the shape of my mouth changed, causing speech changes; my tongue changed size, shape, and function, affecting speech and the ability to move food inside my mouth.
Furthermore, the details regarding eating are many and in a constant state of flux. For example, regarding myself: It is best to minimize distractions. (Including caregiver interruption.) Advanced dysphasia diet, requiring foods to be chopped, limited salad access. No mixed textures. (Liquid or solid, not both.) No thin liquids. Check for pocketing following meals. Floss and brush teeth at least once per day.
Even this level of detail isn't enough. Jello is not a good idea. Ice cream could be a problem, not thus far. Limit milk and milk products as they may increase mucus and secretions. Stringy vegetables are problematic to swallowing. Beware of skins on fruits and vegetables. (Peppers, potatoes, apples, etc.) Canned fruits are safer than fresh in some cases. Sour, tangy flavors stimulate salivation that I'm ill-equipped to manage.
What's worse? Any of this can change day-to-day or meal by meal. While I am responsible for ordering foods amenable to my condition, I cannot anticipate changes in food preparation. Like tonight, I ordered green bean casserole but received green beans sans casserole. Unfortunately for me, now I cannot eat it. Nothing is provided to allow me to form a bolus. I also ordered creamy orzo; rice and it's pasta cousin, orzo, demand caution. Though the orzo was creamy, again, I couldn't form a bolus. Two thirds of my meal ineligible for my consumption!
Do you get my drift? ALS is a moving target and variables in caregiving and food preparation add additional hurdles. It's important for continuity of care that, unfortunately, healthcare in a facility cannot give. With ALS, tribal knowledge is important, particularly after speech is gone. And, it's important to have someone around to vigorously advocate for us when we cannot do so ourselves Because, let's face it, each day, we're always learning something.
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