Jennyjen
New member
- Joined
- Jul 16, 2021
- Messages
- 5
- Reason
- Loved one DX
- Diagnosis
- 04/2021
- Country
- CA
Good morning,
I am new here and was just looking for some help. Sorry for the long post!
My Mom is 60 and was diagnosed with respiratory onset ALS on April 28/21. She has been struggling with breathing issues for the past year. Our GP and her respirologist passed it off as COPD. She’s been healthy her entire life. I don’t even remember her having so much as the flu.
Life has changed drastically for our entire family. ALS was literally our worst fear, obviously. 2 of my great aunts on my moms side both died of ALS in their 70’s. We told the doctors this and no one would listen to us. With that being said, we are having genetic testing done to determine whether or not my mom carries the SOD1 gene mutation. After 2 hospital admissions in the span of 6 weeks and 45 days in hospital, a diagnosis was given to her in a hospital room, ALONE! Thank you COVID!
She is on a full time feeding tube. She can tolerate small amounts of food but she gets all of her nutrients from her tube. She uses her bipap approx 15 hours per day and is tolerating that well. She also has a cough assist and suction. My dad is her main caregiver. He lives with her so he does most of the physical work. I have been going daily to assist my mom with emotional support and to give my dad some relief. I am thankful that I live close enough I am able to do this.
I’m feeling alone and alienated and frustrated and hopeless. This forum was recommended by our contact with the ALS Society and I am so glad I found this community. Up until now, I have been trying to do my own research and have a million questions. I’ve found reading through the posts on here to be very helpful. For the first time since this diagnosis, I don’t feel alone. Thank you for taking the time to read my story.
I am new here and was just looking for some help. Sorry for the long post!
My Mom is 60 and was diagnosed with respiratory onset ALS on April 28/21. She has been struggling with breathing issues for the past year. Our GP and her respirologist passed it off as COPD. She’s been healthy her entire life. I don’t even remember her having so much as the flu.
Life has changed drastically for our entire family. ALS was literally our worst fear, obviously. 2 of my great aunts on my moms side both died of ALS in their 70’s. We told the doctors this and no one would listen to us. With that being said, we are having genetic testing done to determine whether or not my mom carries the SOD1 gene mutation. After 2 hospital admissions in the span of 6 weeks and 45 days in hospital, a diagnosis was given to her in a hospital room, ALONE! Thank you COVID!
She is on a full time feeding tube. She can tolerate small amounts of food but she gets all of her nutrients from her tube. She uses her bipap approx 15 hours per day and is tolerating that well. She also has a cough assist and suction. My dad is her main caregiver. He lives with her so he does most of the physical work. I have been going daily to assist my mom with emotional support and to give my dad some relief. I am thankful that I live close enough I am able to do this.
I’m feeling alone and alienated and frustrated and hopeless. This forum was recommended by our contact with the ALS Society and I am so glad I found this community. Up until now, I have been trying to do my own research and have a million questions. I’ve found reading through the posts on here to be very helpful. For the first time since this diagnosis, I don’t feel alone. Thank you for taking the time to read my story.