Bulbar ALS verified for my mom today :(

[Peppa]

My very healthy 85 yr old mom has been having vocal issues (less sound, slower speech, choking on water) for the last few months. She has also had shortness of breath. She’s had the blood tests and the MRI and the ultrasound and the chest x-ray. Today was the EMG, and Bulbar was verified.

I’ve been pretty weepy for the last three days. This is such a huge blow. She is my BFF, my “partner”, my neighbor, and my mom. My dad died from Parkinsons eight years ago.

She stills plays the cello with the symphony in our area, and that keeps her happy and healthy.

We have a “team” meeting on the 27th at the MND clinic up in Salt Lake City. I’m not really sure what to hope for, but it will be good to have a team, I guess.

I’m just SO mad and so sad.

 

[Nikki J]

I am sorry. Even if she doesn’t want o voice bank. Record her voice for yourself. Video is even better

 

[lgelb]

I'm very sorry. Do ask about BiPAP at the meeting -- if she has difficulty catching her breath, it will likely help her. They will do lung tests if not already done.

 

[Mana]

I'm so sorry. It is a terrible diagnosis to wrap your mind around. We are grateful every day to have found our ALS clinic team, this forum, and the ALS foundation. There is a lot of support and information out there.

 

[ttran]

I'm really sorry about this -- I was there earlier this year in January and understand what you're going through. It is an awful diagnosis to receive and to start navigating. Have you found an ALS clinic to go to? We found a team, along with the ALS chapter in our area (and great forums such as this).

I started adding food/liquid thickener to my dad's soups/water/other liquids and that helps a bit! The method of "chin tuck" when swallowing the water helps too and making sure it's one sip at a time, it'll prevent more choking.

Sending my thoughts and wishes to your mother, you, and family. Do take care of yourself too!

 

[SeaGunny]

I concur about the voice recordings and the video. I would suggest transcribe, record or write down and stories she remembers that mean something to her.

Do ask about the BiPap machine. You all, (gird your loins) are going to need all the help you can get. Any number of us on here will do what we can to help you, inform you - we will do what we can. I am terribly sorry for you and your mom.

If she has trouble eating and they give her a feeding tube, I have a fresh box of 2 cases of Kate Farms, I will send you. (Not sure why I am still getting this stuff). It is in a climate controlled environment at present. Send a note to the moderator to get permission to get my e-mail address (FYI: I do NOT sell anything - nor will I even ask for postage - you are taking care of your mom and for that I thank you.

Moderator, if Peppa ask for my contact info, permission granted!

 

[Peppa]

Thanks so much for your comments and compassion, everyone.