Mom Diagnosed on 2/14... Bulbar Palsy Onset ALS

[Mazie]

Just as the title says, my mama was recently diagnosed, after almost a year of testing.

She suffered two minor strokes in 2022 and started having issues with her throat/voice, doctors could not figure it out. Within months her voice was completely gone. She traveled abroad for other opinions. We were finally referred to Columbia and the doctors there diagnosed her immediately, further testing ensued just to confirm the diagnosis.

She's a trooper. My hero.

She just had a G-Tube inserted this past week, to help her regain some weight.

I'm not going to lie... I'm scared, I'm not ready for any of this.

I'm afraid of losing my mom, my daughter losing her gramma.

How do you all cope?

 

[Tomswife]

ALS is a complex disease and your Mom is on a difficult journey. I am sorry to welcome you. There are many topics here for you to explore when you have time. The search engine on the forum is very good.

You Mom is fortunate to have you thinking about her well being.

 

[Andvari]

Well having the diagnosis makes death a lot more real. It makes you realize that the things you want to do, need to get done. It tightens your bonds with family and friends, and makes you realize that some people are just butt holes, and you don't need them in your life. It makes you appreciate life. I am a little more apt to call out BS these days because what is the worst that is going to happen to me? lol I plan on making the rest of my life as much fun as possible.

 

[lgelb]

Very sorry to hear about your mom, Mazie.

If she has lost a lot of weight, it's good that she got the tube.

I understand the fear of losing her, but what you'll remember long after she's gone is the good times you can still have together. Fill your and her life with those as long as you can. When the time comes, you can turn your attention to making sure her passing is peaceful. But that is not today. Today is for living.

Best,
Laurie

 

[KimT]

Hi Mazie,

I'm so sorry about your Mom, but I'm glad she has you. You can make good memories with her and those memories will include your daughter.

I don't have kids or a husband but I try to maintain contact with my niece, two cousins, and my friends. I can still manage at home. I have a housemate who can help me with my little dog.

I took care of both my Mom and Dad when I was younger. It's hard to watch a parent decline but they knew how much I cared and your Mom knows how much you love her.

If you or your daughter need counseling, get it. This disease isn't easy. Don't try to do more than you can do. Let people help.

 

[amber83]

Hi Mazie,

I am so sorry to hear about your mother, she sure is a warrior. My mother Jackie is my hero she is 56 has bulbar als. My mom is on a ventilator a tracheostomy and has a feeding tube. I recently stopped working to be able to be there by her side daily and to help with her care. I am a combat veteran with ptsd and I am also a single parent. I have many fears along with panic attacks and nightmares due to the trauma I faced in my life. This is by far the hardest thing I have ever had to deal with. I have expressed my concerns on this forum about getting als as well, along with losing my mom.

I have joined a grief group , go to church as well as a Buddhist temple. I am back in therapy as well. My step father is a saint a very good man he is my mother primary caregiver. I go and help daily for several hours a day . I live in Philadelphia my mother and step father live in New Jersey. My daughter is only 11 it’s extremely hard for her to see my mom is the condition that she is in. However it brightens my Mother’s Day to see her so I take her with me on Saturdays to visit. I am scared of being in this world alone without my mom she has been my mom and my dad along with bestfriend. I have a lot of mixed emotions and questions about life now. I do know that I made the right decision on Letting my job go to be there for my mom more. I am fortunate that I get a pension from
My service time otherwise that wouldn’t have been possible.

Frankly it’s hard trying to even keep going to school online. However it’s something to keep my mind occupied although it’s hard to concentrate at times. Showing my mother my grades it makes her light up. Wow I am grateful for this forum and to be able to express how I feel. I started trying to write a book on my experience with my mom our goal is to be able to help others . I am not sure if I’ll actually complete it but for now it’s something positive. I am trying to be strong I don’t have any other family.

I have a bestfriend of nearly 20 years who is like a brother to me whom I share a home with. I don’t know where I will be in the next year , but I do know that I can look back and say I was by my mothers side when she needed me the most. Godbless all the als warriors and their loved ones and caregivers.

 

[Tomswife]

Amber. Thank you for your heartfelt expression of support for Mazie and also for your Mom. You are doing ALOT. I am sure your Mom appreciates your visits and care. You are balancing many aspects of life at once as a daughter and a Mom. Try to find space and time to do nothing, or write your story. You need to re-energize.

 

[KimT]

Amber, Thank you for your service and for being so supportive to Mazie.

Your Mom is very fortunate to have you in her life.