Just wondering if you got your mom to go to her clinic in July. My wife also refuses a peg but the differance is that she is still not having any difficulty swallowing. Your mother is blessed to have you as a caregiver. Hang in there. May God bless you with the strength you need. Jim
Hi Mel, so sorry to be absent for so long.. I think I mentally needed a break from the constant internet research about ALS. All those coincidences with us are strange.... hmmm! Its also interesting to me that it seems there are a lot of women in our mother's age group being dx'd with bulbar onset. I've read that bulbar is more common in women, but it seems odd and worthy of more study. Sounds like you have been learning a lot and I hope you all are making your way. My mom seems to have stabilized a bit- which is great. But she is on the bipap 24/7 so that has a tremendous effect on QOL.
That's great that your mom is coming to live with you. Were you planning that before or is that because of her illness? I took a leave to be with my mom for awhile, but I've got to go back to my job. So we are trying to figure out next steps. I have a sister who lives close to her so that is great. She is not in hospice at the moment. It is a really tough disease - physically and mentally - so hope your mom can find some peace ( if she has ALS). Has she been tested for MG and Lyme's disease?
Ah, just read your posts and see you are going to UCSF. They are supposed to be great. My mom started with hoarse voice in 2008 -- many doctors and many symptoms later, including losing the ability to swallow and now talk -- she was diagnosed at UC Davis. But as with you, it is really now so much about the mother/daughter relationship that was/ wasn't in place before the ALS.... so I feel your dilemma. Let me know if you want to talk more..
I am a Mel too ( Mellissa) and the daughter of a mom with ALS. My mom is in Grass Valley. Where are you going for your EMG/Neuro appt? Let me know if you have any questions. My Mom has bulbar onset and we have navigated a lot already. Good luck and your mom is lucky to have you in her court.