superkate

Hello superkate, I am new to this site - mom was diagnosed with advanced ALS last month. My dad had oxygen delivered today even though it will not be covered by Medicare (mom is 82). He just wants her to feel better. I'm so clueless as to when a trache is necessary - I don't think my mom and dad will want that because of mom's age. I am assuming that your mom is young and I pray that she stabilizes. Hugs to you.

Update, Mom had her trache put in three weeks ago and it has been a long battle with new care and new cleaning methods. and sad wth the loss of some things she loves like a shower. she can breath ok on just room air but at night she uses H20 but the sucktioning is overwheleming. and anxiety has set in with her. they gave medication for anzxiety but it interfears with her ablilty to pee. I feel it is better to control her anxiety then body functions. It is a new level of scary and confusion. Not sure if we are doing the right thing.

Hi Cheryl,
Thanks for writing and letting me know how you are. Are you able to eat and speak and feel normal. Of course you must scared and worried but I have been thinking of you. I also worked in the medical field for 12 years. mostly on the financial side of it. billing, coding and fighting with insurances to get doctors paid fairly for their expertise and time. but also with patients just listening to their stories and thoughts and feelings. My specialties are in orthopedics but also worked for a ophthalmologist which specialized in retinal surgery for seven years. I could never be a nurse so i respect you very much.

I hope that you have a great report from your EMG and that you feel great. Know that i am thinking of you and keep me posted.
thanks,
Katie

Thanks Kate! I will let you know the result of the EMG.

I hope you and your Mom are doing well. I keep thinking of both of you and hope all is well.

Hi Kate,

You left me a message and asked if I would update you about my medical condition. I met with a neurologist and he said he doesn't believe I have als. I did provide him with the my father's reports from Cleveland Clinic and the University of Michigan so he decided to conduct an EMG given my current symptoms and my father's history of bulbar als. He did notice that I have weakness on the left side of my mouth however he thought it was neuritis. We also discussed genetic testing but it is expensive (about $1,000). He is going to check and see if the company will offer it to me. I will have the EMG on August 31.

I am wondering how you and your mother are doing?