lummylam
New member
- Joined
- Oct 12, 2015
- Messages
- 5
- Reason
- Learn about ALS
- Country
- US
- State
- Oregon
- City
- Bend
I am an occupational therapist that works in a level II acute care trauma center. I am 43 years old. I see PALS in my daily work so I am familiar of the symptoms. I am also a neuro specialist and work with patients with all kinds of neurodegenerative disorders.
I am watching my body disintegrate in front of me, my muscles are twitching and cramping, and I have a poor swallow (aspirating on my saliva at night, water during the day). My tongue moves around in my mouth a bit crazily and I am having garbled speech. My head is difficult to hold up on its own without support of my arms, especially after a full day at work. I cannot lift things I once did, having to ask my children to perform the lifting for me. My balance is impaired and I have had a few close calls, but able to regain my balance prior to full falling. My MRI, blood work, and other tests are all negative except my swallow evaluation. I was found to have profound swallowing weakness. I know my neurologist personally and have not told him I think it may be ALS.
My questions:
Since my symptoms are not one sided, and weakness is throughout my entire body, I am hoping for guillan barre' syndrome, but I have never seen anyone with tongue fasciculations like this before with GB.
Since I am having trouble breathing at night, respirations from 22 breaths per minute to 8 breaths per minute, I fear bulbar symptoms. I wake up with severe headaches when my wife notices this in me. She is worried to fall asleep at times. I am now sleeping in a recliner, but I aspirate. Do you have recommendations for sleeping positions? Bipap or Cpap is 3 weeks out minimum (any other suggestions)?
I am losing my memory, so I try to use memory strategies but this is half effective. Do others suffer from memory issues as well?
I appreciate your replies in advance. I really have a deep respect for anyone affected by any neurological process and that is why I am in this field. I love my patients and my job.
Thanks,
Lummy
I am watching my body disintegrate in front of me, my muscles are twitching and cramping, and I have a poor swallow (aspirating on my saliva at night, water during the day). My tongue moves around in my mouth a bit crazily and I am having garbled speech. My head is difficult to hold up on its own without support of my arms, especially after a full day at work. I cannot lift things I once did, having to ask my children to perform the lifting for me. My balance is impaired and I have had a few close calls, but able to regain my balance prior to full falling. My MRI, blood work, and other tests are all negative except my swallow evaluation. I was found to have profound swallowing weakness. I know my neurologist personally and have not told him I think it may be ALS.
My questions:
Since my symptoms are not one sided, and weakness is throughout my entire body, I am hoping for guillan barre' syndrome, but I have never seen anyone with tongue fasciculations like this before with GB.
Since I am having trouble breathing at night, respirations from 22 breaths per minute to 8 breaths per minute, I fear bulbar symptoms. I wake up with severe headaches when my wife notices this in me. She is worried to fall asleep at times. I am now sleeping in a recliner, but I aspirate. Do you have recommendations for sleeping positions? Bipap or Cpap is 3 weeks out minimum (any other suggestions)?
I am losing my memory, so I try to use memory strategies but this is half effective. Do others suffer from memory issues as well?
I appreciate your replies in advance. I really have a deep respect for anyone affected by any neurological process and that is why I am in this field. I love my patients and my job.
Thanks,
Lummy