Comments on: Bulbar onset

By: Michael Barry

Michael Barry — Wed, 01 Feb 2012 22:20:46 +0000

I have the bulbar onset and noticed slurred speech in July 2011. As of Feb 1, 2012 I can not speak, produce saliva at alarming rate, and have almost lost use of hands and arms. No neck strength. Constant fascicilations, and upper body muscles atrophying daily. In short….Fading fast.

By: diane binkowski

diane binkowski — Sat, 20 Aug 2011 14:34:36 +0000

sorry I wanted to edit my reply after I wrote it but I had entered it already.
I wanted to say that my mom started a few years ago with swallowing diffiuculty and it got so bad that her nutritional needs were not being met and her speech was deteriorating.

By: diane binkowski

diane binkowski — Sat, 20 Aug 2011 14:31:35 +0000

Hello, we just received a confirmed diagnosis of ALS for my mom. She started a few years ago. It got very bad to the point where her nutritional needs were not being met and her speech had worsened. She was put on a feeding tube in Nov. 2010. EMG results kept showing negative for ALS. I am realizing now that this is probably b/c her ALS is in the form of Bulbar Onset. I am struggling with this and am so glad to have found this forum

By: Heidi

Heidi — Tue, 12 Jul 2011 16:39:12 +0000

My heart goes out to all of those who are personally affected by this disease. I will do what I can to raise awareness and concern. Thank you for your eloquent posting about your mom. My sympathies to you and your family.

By: Terri Stoecker

Terri Stoecker — Tue, 08 Mar 2011 19:31:17 +0000

My husband recently died of bulbar-onset ALS. At age 67 his original diagnosis was dementia/alzheimer’s disease. 6 months later he had a dramatic amount of weight loss, muscle wasting, and then his speech became slurred…fasciculations were noticable in his thigh..the dr. changed the diagnosis to ALS with frontemporal lobal dementia. He lived only 5 months after the diagnosis. For those of you with loved ones suffering from this disease..I hope you have a strong support system. don’t hesitate to as for help with their care…it is a difficult journey for everyone….

By: aaron taslitz

aaron taslitz — Tue, 18 May 2010 03:44:01 +0000

thank you so much for posting this. my mom has exactly the same thing, bulbar onset ALS and has received stem cell treatment, electro shock therapy, and rilutek for it.

By: Amy

Amy — Thu, 17 Dec 2009 00:15:57 +0000

My friend has bulbar-onset ALS and experiences extreme salavation as well. The best remedy is a suction machine, but she was told that a Dramamine patch behind the ear has been known to help. It has worked for her. She was also told that Botox injections behind the neck are helpful too and should be covered by insurance with a Dr’s perscription. My friend hasn’t tried this option. Best of luck to you and your mother.

By: Donna

Donna — Sun, 29 Nov 2009 21:22:15 +0000

my mother has ALS and she struggles with extreme saliva production..Even to the point of gagging her at times..Any suggestions? home remedies? Her doctor has prescribed two different medications but neither has helped, in fact the problem seems to be getting worse..

By: mary

mary — Wed, 05 Aug 2009 01:32:58 +0000

My special aunt was just (July 2009) diagnosed with ALS (bulpar symptoms started in March 2008) drs. This helps to understand what to expect

By: Marie

Marie — Thu, 23 Jul 2009 01:04:50 +0000

thanks for posting this. I’m going to post a thing on my blog in the next day or two to publicize it.