Kmbertrand
New member
- Joined
- Aug 8, 2018
- Messages
- 6
- Reason
- Loved one DX
- Country
- CA
- State
- Ontario
- City
- Ottawa
I have been waiting for our official diagnosis from and ALS specialist/neurologist to post and we got it last Thursday so here I am.
My mom was her normal awesome self in April this year. In May we noticed she was slurring her words and she had a couple of falls while cleaning the house.
In June we took her to ER as she was having significant leg weakness and the slurring was becoming more prominent and we thought maybe she had had a stroke. They worked her up for everything and all was negative so they sent a consult to a neurologist. After that appointment she received notice from a larger hospital that she had an appointment at the ALS/NMD clinic.
By the time that appointment came July 30 she was walking with a walker, very tired and slurring much more obvious. We had the appt on AUg 23 where she had another EMG and we received the ALS diagnosis.
So from April 2018- August 2018 she has declined so much that she is wheelchair bound and on bipap for night time and having difficulty eating and drinking. The physician and the nurse at the clinic have not given me any idea of what to expect as far as timeline and say that everyone’s progression is different.
My question is: has anyone had or cared for someone who had such a rapid progression and then completely plateaued for an extended period of time? Or should I expect that because she has progressed so rapidly that she will continue to do so and I don’t have a lot of time with her. I’m hoping to take some time to be off of work with her and help be a caregiver for her but I’m afraid to be off too soon as I will only have about 6 months to be off with her. Thanks for your time!
Kristen
My mom was her normal awesome self in April this year. In May we noticed she was slurring her words and she had a couple of falls while cleaning the house.
In June we took her to ER as she was having significant leg weakness and the slurring was becoming more prominent and we thought maybe she had had a stroke. They worked her up for everything and all was negative so they sent a consult to a neurologist. After that appointment she received notice from a larger hospital that she had an appointment at the ALS/NMD clinic.
By the time that appointment came July 30 she was walking with a walker, very tired and slurring much more obvious. We had the appt on AUg 23 where she had another EMG and we received the ALS diagnosis.
So from April 2018- August 2018 she has declined so much that she is wheelchair bound and on bipap for night time and having difficulty eating and drinking. The physician and the nurse at the clinic have not given me any idea of what to expect as far as timeline and say that everyone’s progression is different.
My question is: has anyone had or cared for someone who had such a rapid progression and then completely plateaued for an extended period of time? Or should I expect that because she has progressed so rapidly that she will continue to do so and I don’t have a lot of time with her. I’m hoping to take some time to be off of work with her and help be a caregiver for her but I’m afraid to be off too soon as I will only have about 6 months to be off with her. Thanks for your time!
Kristen
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