bulbar onset diagnosed 8/2024, has anyone passed away when they could still walk and use their arms?

[dianej]

My breathing test came back with only 35%, I made an appt to have a feeding tube installed, because I can not eat much and need to thicken fluids,
I've lost around 50lbs. My arms and legs are still strong, I'm afraid my breathing is going to kill me if it keeps getting worse. My bulbar symptoms started jan 2024, Two years ago my breathing test was 58%, I have copd. Has anyone passed away from breathing issues when they still can walk and use their arms?
Thks

 

[Marieb425]

My PALS is in a similar situation. He has advanced bulbar progression and respiratory involvement. I don’t know if the respiratory involvement is advanced or not, but his MIPS is at -28 and the RT couldn’t get a valid FVC but said it was around 30% when she attempted. I know it can be harder to get a valid FVC with bulbar involvement. He’s had a feeding tube for a year and he’s not able to eat or drink anything by mouth. However, he is still walking around and has use of one arm/hand. He’s almost 42 and was diagnosed almost 2 years ago.

 

[Nikki J]

Yes it is possible. A mixed blessing I think. No one wants to die when they have good qol but no one wants to be paralyzed either. Very sorry

 

[dianej]

I hope I go before I lose my legs and arms, I'm 74 and live alone, hopefully I will pass away in my sleep, the dr said carbon monoxide builds up in your body when you do not breath strong enough and you die peacefully, I hope he is correct, I also have copd. My bulbar started 1/2024.

 

[Nikki J]

I understand that. And it is true that carbon dioxide builds up if you can’t exhale properly. It can give headaches and confusion though before it reaches lethal levels. You might want to talk to palliative care if you aren’t hospice ready. They can help you plan and ensure that you are comfortable and having the best quality of life possible

 

[dianej]

before this ALS , i wanted to donate my organs is this still an option for me?

 

[Nikki J]

The ALS Association

You might also consider donating your brain and spinal cord for ALS research. If that interests you ask your clinic

 

[dianej]

good idea thks

 

[lgelb]

If universities near you do not have a program, the NeuroBioBank, via the Brain Donor Project, will send a pathologist after death to harvest your brain for research. Any designated family can also get a report on the findings.

 

[Nikki J]

The Les Turner ALS foundation has a learning series of webinars. There is one on Thursday about navigating conversations with your ALS providers. The two speakers are palliative care physicians. The site is lesturnerals dot org. Go to the education tab and select learning series in the drop down to find information and registration link. Forum rules unfortunately don’t allow me to post their link

 

[ChrisMc]

Our daughter died from Bulbar onset ALS in April 2023. She was still able to walk with a walker and use her hands to text right up until 2 days before her death. By then her breathing was difficult and she was too weak to walk, but she could still stand to transfer to the toilet. She couldn't speak anymore, but she could smile and give hugs. We sure miss her!

 

[Gschamb]

My bulbar started in March 2024, but I had a precious year of testing. My legs and arms are good, but I cannot eat, talk and slowly losing my availability to drink. I have a lot of pain in my muscles, but only at night..I didn’t have a feeding tube put in, maybe I should have..

 

[Nikki J]

G you should be able to change your mind Call your neurologist if you have sooner the better if you go that route. If on the fence this might help What is a feeding tube? - Les Turner ALS Foundation

 

[Marieb425]

Gschamb - my PALS pushed back on the feeding tube idea for too long, but I don’t think he would be alive at this point if he didn’t have it. He’s had the feeding tube since august of 2023 and can’t eat/drink anything anymore, but he’s still able to walk around, albeit with some foot drop now happening …

 

[Lhberko29]

Why rush death enjoy life while you can. I did travel to Mt Rushmore, Badlands, Boulder CO, saw friends and drove the beautiful Nebraska & Wyoming, went Moab Utah to Arches National Park, drove to Four Corners where UT, AZ, CO & New Mexico, drove to Clear Sky Resort for 2 nights spectacular stargazing, took a wonderful train ride to South Rim Grand Canyon, saw family in Scottsdale & flew out Phoenix. A trip of lifetime. One day at time. Live for moments!!