Mother diagnosed

[LCarter]

My mother’s symptoms started in May of 2019. The only symptom was hoarse speech then progressed to slurred speech and difficulty swallowing. After several doctors over the next year, we went to Vanderbilt. They said they did not think it was anything degenerative. September 2020 she had a feeding tube put in. Still only having speech and swallow symptoms. In October of 2021 her gait started getting week. By February she was completely in a wheelchair. In May, after a year of waiting for it, she had an appointment at UAB. The doctor said she would have to run the diagnostics but she was sure it ALS. Now she is completely total care. Her breathing has started getting a little labored. I know there is not a specific timeline, but it seems like everything is happening at once.

 

[lgelb]

I'm very sorry about your mom. If her breathing is becoming labored, it is likely time for a BiPAP machine, so I would ask UAB about that.

Best,
Laurie

 

[Bry2k200]

Sorry to hear about your mom. My family has the C9 gene mutation, my uncle (eldest), my mother and her youngest brother all developed ALS (her youngest has ALS & FTD, recently diagnosed). I lost my mother last November, her symptoms first began in late 2014, and she wasn't diagnosed until mid to late 2020. I feel your pain my friend, of you need to talk these people here are beyond amazing, they will answer your questions better than anyone.

 

[Mary2]

LCarter...Sorry to hear about your Mom. Sorry it took awhile to get a diagnosis. Hopefully UAB will be helpful to you. This forum is great and can provide information. We have also been in contact with the Georgia ALS Association. The Georgia ALS association employees know the employees at the 3 clinics in Georgia and this can be helpful. Perhaps the Alabama ALS Association can be helpful to you. Again so sorry this is happening. My thoughts are with you and your family. Post here as often as you want. I am a caretaker and this forum has helped with information and emotional support. My husband started with a bipap machine at night but now uses it 24 hour hours a day. The bi-pap has helped tremendously.

 

[KimT]

I'm so sorry about your Mom and sorry it took them so long to diagnose her. I think BiPap will help her feel better. It helps so many PALS.