a Very important questions?

[john.rt]

Q3- people who are affected with als/mnd does anger make it worse to them i mean when they get mad does that affect speech worse, because friend of mine he started to have slurred speech specially when he gets mad you could hardly understand him some time you cant understand him?

Q1-if you got bulbar als how long it takes to spread out to limb?

Q2-did any body had bulbar als and it affects speech and stopped there i mean it only limited to speech problem and hold there or it is impossible it has to spread?

 

[Ellamay]

John
Q1 - progression is different for every person so it is hard to say. With my husband it took only a few months but that is how it is progressing for him and may not affect everyone like that

Q3 - My husband is extremely frustrated as intense emotion ,whether anger or saddness, causes his speech to get worse.

 

[john.rt]

thanks Ellamay very much ,but i still need other member to reply

 

[LeeLee]

Hi-I was definitely diagnosed with bulbar onset ALS two months ago. I have had slurred speech for 1 1/2 years and yes, emotions do make it worse and also fatigue. Three months ago, I developed a mild to moderate foot drop. Other than that, everthing else is working. I sometimes wonder if I might have PLS. Good luck and let's hope and pray that our symptoms move slowly because I want to move quickly!

 

[john.rt]

I appreciate it LeeLee, does that mean slurred speech can be ahead by one year and more, it seems strange to me, I just heard it, if some once else had this before please let me know

 

[rowland's wife]

Q1

Q1 my husband started having slurred speech in july 08, he was diagnosed in sept. 08 his speech over the last 2 months got even worse. around dec 08 he started having right handed weakness it has gotten alot worse it is almost impossible for him to cut up some foods, it is hard for him to open the car door, start the car, button pants, the last few weeks he has started noticing left handed weakness, but it is different for everyone, his is progressing fast.

 

[john.rt]

thanks rowland's wife,but it is still to me abnormal progress

 

[Al]

What do you consider "normal" progress John? A lady here today lost her husband in 10 months. I have no bulbar symptoms after 5 years. My friend died after less than 18 months with bulbar onset. A guy in my group has bulbar and still ,drives after 3 yrs. so what is normal?

AL.

 

[BethU]

Q1 ... it is different for every ALS patient. Everybody tells people that, and nobody but PALS and CALS actually seems to get it.

My slurred speech started March, 2006.
December 06 swallowing issues appeared.
Speech and swallowing continued to deteriorate. Experienced emotional lability.
Respiratory failure, December 07.
DX with ALS May, 2008. At that time, my only detectable symptoms (to me) were bulbar, although the EMG detected denervation in my left shoulder and leg.
Autumn, 2008 ... Began having detectable (to me) symptoms in hands, arms and left leg ... weakness and atrophy.
BiPap, walker and feeding tube in December, 2008.

I feel now that my ALS is making up for lost time, but I don't trust my perceptions, as the progression "seemed" slow when it was all bulbar as the progress was so subtle. Now that it is affecting the rest of my body, it "seems" faster because I'm falling down, but who knows?

I asked my neuro last week if I had slow progression, and she said, "Fairly slow" in the tone of voice that means "Hell, no, you idiot, but I have no intention of getting into a discussion of this subject."

 

[rose]

John,

The top neurologists all agree that there is nothing considered the norm in progress, Some people seem to have an atypical progression, but, "atypical" can have many meanings in either the way the disease presents itself, moves to different areas of the body, or whether it moves swiftly or slowly.

Fatigue and emotional stress seem to have a universally bad effect on PALS, and it doesn't matter what version of ALS they have. This is one constant!

There is a search feature of this website that allows members to find much information. This can help you better understand your friend's illness, just keep in mind that what applies to how one person experiences any of the motor neuron diseases, does not mean it will affect another person ~ even with the same date of onset or area affected, in the same manner.

 

[BethU]

Very well explained, as always Rose ...

One little p.s. ... when you read old posts, remember that not everybody on this forum has (or had) ALS. Sometimes you will find a message that recites a lot of symptoms that are not connected to ALS. Try to figure out the writers' context, if possible. This goes for current members, too, and other support forums you may visit.

 

[LeeLee]

HI John, I had slurred speech a year or more before my foot drop became noticeable. It is difficult to project my voice when I am in a crowd. I can still swallow 4 or 5 pills at a time and have no problems with my lungs. The doctors say my symptoms are moving slowly but as everyone says, this affects us all differently.

 

[BarryG]

Hell this whole friggin disease is "abnormal" if you ask me. Sorry, my bad. :roll:

 

[Al]

Boy I didn't think we were allowed to say hell or friggin on here. Bad Barry, no bed time snack for you.

AL.

 

[BarryG]

My apologies, I forgot that being grumpy is not part of emotional lability. I'm not "normally" that way but then having to talk using a speech device and having to eat using a hose in my belly is not normal either so I guess there is no normal. Anyway, I'm tired out and I have to have my bed time snack so goodnight all!