what is Bulbar Onset

[astro]

I've been browsing the posts for a couple of weeks now. We live in NZ and have not heard of this Bulbar Onset of MND. However I am interested to know more. As I posted once before my mother aged 72 had a rather sudden onset of Bulbar Palsy. Slurred speech, tongue atrophied etc, Now after about 6 months she has completely lost the ability to speak and swallowing is becoming very difficult. She is losing weight. Drs still to give us a difinitive diagnoses. So.....is Bulbar onset the reverse to what other sufferers have? I see some people develop my mothers symptoms more towards the end. Is this right? Will she have the same life expectancy 2-5 years. She has some shortness of breath, however no other symptoms or muscle weakness, only a constant tremor which she has had for years and years. Am I to expect that very shortly she will have other signs which will help Drs make a diagnosisI would love to heard from others who had these symptoms first and what to expect. Many thanks

 

[BarryG]

astro, sorry to hear about your mom. In ALS there are two main types of onset, limb onset (around 75%) and bulbar onset (around 25%). Bulbar onset affects the speech and swallowing first by paralyzing the tongue, lips and throat. Eventually the paralysis progresses to the limbs. This is the opposite to limb onset where one or more limbs are affected first and eventually involve speech and swallowing.

I started with slurred speech three years ago, now am speechless and cannot eat or drink anything and am now using a walker and wheelchair but no one can predict life expectancy or the speed of progression.

 

[astro]

Thanks Barry. It is what I was thinking. Not so kind is it. She will be without speech througout the whole hideous ordeal then, which will make things even more unbearable not being able to keep her strength up with food or communicating. Do you think that 6-8 months is quite quick progression from slurred speech to losing the ability to talk and no doubt give up food very soon I expect, or is it about norm.
Take Care.

 

[sadiemae]

Hi watch the videos posted int the "Als research news" forum, titled Director of Research at Forbes Norris. There are 3 videos on You Tube that has a very good explanation.

 

[BarryG]

Well 6-8 months is faster than me but not a lot, I was pretty much unintelligable after about a year. I got a peg tube about 18 months after the start of symptoms after losing 40 pounds and it has kept me alive for the last year. As far as communication goes, there are so many devices now that can help us talk. Good luck with your mom and if there is anything I can do to help just let me know.
Barry

 

[Madison1943]

It sounds to me that you said your mother has a diagnosed of bulbar palsy, not ALS. My grandma had the same symptoms 40 yrs ago. She never progressed beyond the no swallowing and no talking phase. She could always walk with heels, use her hands, etc. Mercifully her heart stopped the day after drs put a feeding tube in her. If she has bulbar palsy, which I think my grandma had, not ALS, she will need a feeding tube eventually. Please double check with her doctors!


good luck,
Carol

 

[lms9258]

Hi Astro,

My mom was also 72 when slurred speech started. She did go very quickly (but gradually if that makes sense), to not being understood, within six months. She still has the use of her hands, and writes quite beautifully. She uses a dry erase board to talk, as she was never into the technological--computers and such. I am however, checking into some other way for her to communicate because she is getting much weaker in the limbs now. Don't know how we'll deal if she can't "talk". I am so sorry that you are beginning this "hideous ordeal". I still remember how unbelievable it was to think that my mom was going to lose her speech. But we have done okay for over a year now with her writing everything down. As with Barry, my mom has a peg tube for nutrition. Best of luck.

Laura

 

[Judith]

astro,
Has your mom been to an ALS specialist to have an EMG/NCS test? I have bulbar onset also. My EMG/NCS came back clean and I was diagnosed with PLS. After 4 years, my left leg and arm started to weaken. In 2009, I had another EMG test, and it showed LMND. The numbers were too low to reclassify my diagnosed. In January of this year, I was reclassified with a diagnosed of ALS. From onset in 2004, it took about 2 years for my speech to become non-understandable. I have lost a lot of weight and I have swallowing difficulties. I still can manage eating some foods and thick liquids. I do not have a feeding tube. I cannot walk or transfer any longer. I am in a powerchair now and my left hand is pretty much useless.

Judith

 

[astro]

Well it all seems still confusing. I could hope Carol that all she has is the psuedo bulbar palsy and that there is going to be no progression.
If she could live speaking with her machine and peg fed that would be awesome. And I am guessing that the neurologist she has been seeing is waiting for other symptoms to begin before giving us a diagnosis. Next appt in Dec, which I will attend with her. She lives around 4 hours away and is quite remote, only sees a visiting Neurologist. Not one who specialises in such. I am keen to get her down to Auckland for a second opinion. I dont really understand the american abbreviations for scans, they are not the same as ours.
She had an Cat Scan which only showed a little aging in her brain, nothing else. However it might be interesting to have another, as you have said Judith, yours did show something up after a while. Thanks everyone for taking the time to reply to me. It is great to know I have such experts on my side, and somewhere to turn for help and advise at this very scary time. Take Care, Tracey

 

[Judith]

astro,
the tests are: Electromyography (EMG) and Nerve Conduction Velocity (NCV) Tests

LMND: lower motor neuron damage