What's the worst aspect of having ALS?
Is it the continual loss of motor skills? One day you can no longer lift your own finger? Hand? Arm? Or scratch your own nose when it itches? Or wipe it when it runs? Or pet your own cat? Or hold your husband's hand? Or button your own blouse? Or unzip your favorite blue jeans? Or wipe your own behind? Notice the new stilt in your gait? Trip over air to faceplant on the kitchen floor? The front porch? Graduate to a cane? Rolling walker? Then a manual wheelchair? A fancy motorized wheelchair?
Is it the falling away of friends and family who don't understand my disease process? Admittedly, ALS, amyotrophic lateral sclerosis, is a scary disease, it's a terminal illness, there are no pluses to this disease, you shrink, shrivel, slobber and, ultimately, die anyway. They are right to be afraid but you are not contagious. And you need support and effective advocacy.
The few that visit, are put off by the out of sync speech pattern of the AAC device, or the lack of visual contact, the speech device requires to operate. Worse, the frustration experienced when the device fails to perform at all. Which occurs more often than the manufacturers would have you believe.
Is it the pain?
At different times the pain varies. As spasticity increases, so increases pain. Charlie horses are excruciating, constipation sucks, diarrhea blows!
It's interesting how painful it feels to not move. Poor circulation hurts. Tendons and ligaments shrink up and cause pain. Even short periods of time, sedentary, cause pain.
As muscles atrophy, everything destabilizes, aches and pains are more pronounced and injuries occur more frequently. For example, a brief change causes the spine to get wrenched, when turning.
Is it the continual loss of motor skills? One day you can no longer lift your own finger? Hand? Arm? Or scratch your own nose when it itches? Or wipe it when it runs? Or pet your own cat? Or hold your husband's hand? Or button your own blouse? Or unzip your favorite blue jeans? Or wipe your own behind? Notice the new stilt in your gait? Trip over air to faceplant on the kitchen floor? The front porch? Graduate to a cane? Rolling walker? Then a manual wheelchair? A fancy motorized wheelchair?
Is it the falling away of friends and family who don't understand my disease process? Admittedly, ALS, amyotrophic lateral sclerosis, is a scary disease, it's a terminal illness, there are no pluses to this disease, you shrink, shrivel, slobber and, ultimately, die anyway. They are right to be afraid but you are not contagious. And you need support and effective advocacy.
The few that visit, are put off by the out of sync speech pattern of the AAC device, or the lack of visual contact, the speech device requires to operate. Worse, the frustration experienced when the device fails to perform at all. Which occurs more often than the manufacturers would have you believe.
Is it the pain?
At different times the pain varies. As spasticity increases, so increases pain. Charlie horses are excruciating, constipation sucks, diarrhea blows!
It's interesting how painful it feels to not move. Poor circulation hurts. Tendons and ligaments shrink up and cause pain. Even short periods of time, sedentary, cause pain.
As muscles atrophy, everything destabilizes, aches and pains are more pronounced and injuries occur more frequently. For example, a brief change causes the spine to get wrenched, when turning.
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