Newly diagnosed

[Greeneyes]

My brother was just diagnosed with
ALS progressive bulbar palsy. Are there different types of ALS? If so is the progression the same? Are there any new treatments available? Heartbroken and having a hard time dealing with it. Any information will be helpful.

 

[Bry2k200]

Sorry you are here, and sorry you, your family and your brother have to face this. ALS progresses differently in everyone, just like it presents itself differently. There is a new drug, AMX0035 that was approved recently and there are plenty of new drugs in trial. This place is also a wealth of knowledge, don't be afraid to ask questions. So many wonderful, caring people trying to help one another out.

 

[affected]

Sorry to welcome you here.
There are some differences in types of ALS from which part of the body it starts in, and whether UMN or LMN dominant. These can all affect progression rates.
You have a lot to work through, including the shock of diagnosis.
It's a lot.
You can start with some resources we have, search about in here, and importantly, ask questions.

Resources

www.alsforums.com

That link takes you to a bunch of stuff - you might want to start with the Just diagnosed and Second opinion posts.

We can walk along with you, and help you navigate all this new stuff to digest and help your brother work through.

 

[lgelb]

Very sorry to hear about your brother. Please let him know he is welcome here.

PBP is essentially bulbar-onset ALS, meaning that the problems start with muscles in the neck and head that affect primarily speaking, swallowing, and chewing. The loss of movement then progresses into the limbs and other areas. Progression from that point runs similarly to ALS, with breathing problems the primary cause of death as for other types. Medications are available to make the end of life a peaceful one.

Riluzole, Radicava, and Relyvrio are all treatment options to discuss with his doctor, along with many other strategies to extend the time worth living.

Best,
Laurie

 

[Greeneyes]

Thank you Laurie.
I have a lot of research to do on this subject. I know my brother has a good neurologist who specializes in ALS and has a team of specialist following him. As a nurse I want to be able to support him and I don’t know what questions to ask him to ensure that he is getting the best care he needs. Any suggestions will be helpful. We live in different states so it makes it difficult. He does have his wife to support him as well.

 

[Mary2]

I am sorry about your brother's diagnosis. I am a caregiver to my husband who has ALS...limb onset. ALS is a lot about having the right equipment at the right time. Right now your brother may not need any equipment but eventually he will. Most recently my husband has gotten an eye gaze which allows him to use his eyes to type out emails. This eye gaze also has a language component as well which will speak for him. Some PALS bank their voices so their voice can be used later. His family zooms once a week to stay in touch. I have had family members try and be helpful about managing my husband's care. Basically I try and limit this and encourage them to ask my husband about his interests, current events and books he has read.