RTJKWBACE
New member
- Joined
- Jul 14, 2021
- Messages
- 2
- Reason
- PALS
- Diagnosis
- 12/2020
- Country
- US
- State
- MO
- City
- Davisville
Hello everyone
My name is Chris, I am a wife a mother and a grandmother and I live in Missouri. My symptoms start in Feb. of 2020 in the Bulbar (speaking). I was diagnosed with ALS Dec. of 2020. I am still able to talk and be understood but I dont have enough air to talk and do anything else. I am still able to walk with help of a cane or walker. I know this will probably change soon, so I am trying to keep my independence as long as possible. I was given a Bipap machine to use in the evenings and at night, and it seemed to help but then I got vertigo and it has stopped my use. Its been over a month, I have been to Drs and most of them say they have never heard of a Bipap causing vertigo but when I Google it there seems to be alot of people who have experienced it. I am hoping maybe someone in the group has experienced this and have some suggestions to help me get back on the Bipap. I have also recently started the Healey trials and am on Zilukoplan shots every day but It has not caused any side effects or changed anything so I assume I am on the placebo. There is so much about how to live with this desease that I dont know and I am digging into the forums to learn as much as I can. Like I wonder who thought to put their pills in applesauce because it helps them go right down and saved me many of chokingings and disolving pils on the tongue case it wouldnt go down. That person was definitly a genius! Thank you all for talking about this horrible desease and ways to make it not so horrible. I look forward to talking with you all and learning.
Chris
My name is Chris, I am a wife a mother and a grandmother and I live in Missouri. My symptoms start in Feb. of 2020 in the Bulbar (speaking). I was diagnosed with ALS Dec. of 2020. I am still able to talk and be understood but I dont have enough air to talk and do anything else. I am still able to walk with help of a cane or walker. I know this will probably change soon, so I am trying to keep my independence as long as possible. I was given a Bipap machine to use in the evenings and at night, and it seemed to help but then I got vertigo and it has stopped my use. Its been over a month, I have been to Drs and most of them say they have never heard of a Bipap causing vertigo but when I Google it there seems to be alot of people who have experienced it. I am hoping maybe someone in the group has experienced this and have some suggestions to help me get back on the Bipap. I have also recently started the Healey trials and am on Zilukoplan shots every day but It has not caused any side effects or changed anything so I assume I am on the placebo. There is so much about how to live with this desease that I dont know and I am digging into the forums to learn as much as I can. Like I wonder who thought to put their pills in applesauce because it helps them go right down and saved me many of chokingings and disolving pils on the tongue case it wouldnt go down. That person was definitly a genius! Thank you all for talking about this horrible desease and ways to make it not so horrible. I look forward to talking with you all and learning.
Chris