More about me...I want to update changes I've noticed as ALS claims my body.
As you may know, I have not walked for over a year. I'm fortunate enough to be in a facility that has excellent rehab staff In this particular hospice facility, I get my range of motion at least three times per week to keep my muscles moving. Because I cannot move my muscles on my own, they contract or shorten and cause considerable discomfort and pain. Through quality staffing, I'm able to minimize the amount of drugs I take and enjoy my last days clear headed. I also enjoy therapeutic massage which complements the work of the occupational and physical therapists.
For relaxation, I enjoy the gorgeous music of the therapeutic harpist as well as meditation in my once per month ALS Association meeting or the once per week meditation group. Regardless of this amazing care, ALS progression marches on.
My face seems to be the most noticeable change besides the whole quadrapalegic thing. My mouth is mishapen as muscles expire. Indeed, my bite is altered. I cannot purse my lips together and thus cannot kiss nor whistle. Do I have to tell you that my physical voice is nearly unintelligible? Sometimes, I can't even speak above a whisper. Other times, in a panic, I can still project loudly, just not using words.
My toes are getting to look like "Barbie" doll toes as they relax. My calves have lost their shape as muscles atrophy. My belly is big as I've long since lost my abs and all of the supporting musculature. Most recently, I lost torso rigidity as those muscles fasciculated, then died. Without arm support, my torso collapses down on itself. Breathing is definitely adversely impacted.
Also relatively new, is major neck and jaw spasms. I hate to think about the change that portends. I still have limited strength and movement in my upper arms though my hands and lower arms have been toast for a long time. My fingers seem to have come back to life as they have a mind of their own. Stuttering, tremors, and spontaneous jerking and curling have been very entertaining as I sit here blogging away with my eyes.
What else can I tell you? Elimination is at the mercy of peristalsis, Miralax, and various stool softeners. And, suppositories, when all else fails. Temperature extremes are no bueno. Too hot and I can't take a breath. Too cold is painful since my muscles go into contracture and I am unable to shiver myself warm. Also, a stuffy room or a humid room doesn't lend itself to easy breathing. Turning on a fan can work wonders unless it's directly on me or running across me. Indirect air movement is the ticket.
I am told that my smile still lights up a room. That's something. I hope it doesn't go away.
As you may know, I have not walked for over a year. I'm fortunate enough to be in a facility that has excellent rehab staff In this particular hospice facility, I get my range of motion at least three times per week to keep my muscles moving. Because I cannot move my muscles on my own, they contract or shorten and cause considerable discomfort and pain. Through quality staffing, I'm able to minimize the amount of drugs I take and enjoy my last days clear headed. I also enjoy therapeutic massage which complements the work of the occupational and physical therapists.
For relaxation, I enjoy the gorgeous music of the therapeutic harpist as well as meditation in my once per month ALS Association meeting or the once per week meditation group. Regardless of this amazing care, ALS progression marches on.
My face seems to be the most noticeable change besides the whole quadrapalegic thing. My mouth is mishapen as muscles expire. Indeed, my bite is altered. I cannot purse my lips together and thus cannot kiss nor whistle. Do I have to tell you that my physical voice is nearly unintelligible? Sometimes, I can't even speak above a whisper. Other times, in a panic, I can still project loudly, just not using words.
My toes are getting to look like "Barbie" doll toes as they relax. My calves have lost their shape as muscles atrophy. My belly is big as I've long since lost my abs and all of the supporting musculature. Most recently, I lost torso rigidity as those muscles fasciculated, then died. Without arm support, my torso collapses down on itself. Breathing is definitely adversely impacted.
Also relatively new, is major neck and jaw spasms. I hate to think about the change that portends. I still have limited strength and movement in my upper arms though my hands and lower arms have been toast for a long time. My fingers seem to have come back to life as they have a mind of their own. Stuttering, tremors, and spontaneous jerking and curling have been very entertaining as I sit here blogging away with my eyes.
What else can I tell you? Elimination is at the mercy of peristalsis, Miralax, and various stool softeners. And, suppositories, when all else fails. Temperature extremes are no bueno. Too hot and I can't take a breath. Too cold is painful since my muscles go into contracture and I am unable to shiver myself warm. Also, a stuffy room or a humid room doesn't lend itself to easy breathing. Turning on a fan can work wonders unless it's directly on me or running across me. Indirect air movement is the ticket.
I am told that my smile still lights up a room. That's something. I hope it doesn't go away.
Sending you a cyber hug. Hope you never lose that smile!
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