Question: about progression of ALS (how fast? )

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Pearl

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Can anyone tell me if symptoms of ALS stall or slow down after a point?

Or, once a person is diagnoised, is this a rapidly progressing disease?

My friend was diagnoised only four weeks ago, but I see a marked change in him (where as 4 weeks ago, he had a slight speach issue and looked "tired" - now I notice a much more pronounced speech issue, tremors in the hands, some difficulty with movement (slower, etc...) - some of this could be due to meds he is currently on. But, it seems like he is experiencing rapid changes.

How fast does this disease progress? I know he has been told the standard '2-5 years' - - I know no one has a crystal ball, but does anyone have any better insight?. What does that mean? Is there a range of disease progression? Thanks.
 

John1

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Pearl said:
Can anyone tell me if symptoms of ALS stall or slow down after a point?

Or, once a person is diagnoised, is this a rapidly progressing disease?

My friend was diagnoised only four weeks ago, but I see a marked change in him (where as 4 weeks ago, he had a slight speach issue and looked "tired" - now I notice a much more pronounced speech issue,.... Is there a range of disease progression? Thanks.
Pearl,
bulbar symptoms, particularly speech, can be quite erratic. Speech may worsen for a prolonged period and then improve markedly. Limb progression, on the other hand, tends to be more consistent with fewer, or no, pronounced reversals.
 

Pearl

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Thank you so much.

If a person with ALS decides not to go on a vent - how does this affect their expected "time left"? He is willing (and already is, at night) to use Bipap.
 

Al

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If you need it and don't go on a vent you will have a short time. A Bipap can keep you going for quite a while though. I've been on it for more than a year and a half and my breathing hasn't changed much. I just use it night or when I lie down to watch TV or nap. Some on the forum are using it 24/7 and it is keeping them going. Once again we are different. Works well for some and others need a vent to keep the lungs going. Sorry I couldn't be more encouraging. AL.
 
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AL, WHat are the signs that tell you that bipap is needed ? Dad coughs a lot, but I think its mostly due to salivation. Are there any specific signs to look for ?
 

Al

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I found I was struggling to get a breath if lying flat on my back. Right side wasn't bad and left side was a bit worse. Now I can't even lay back in an easy chair or I am struggling to breathe. If talking fast and you are breathing heavily it is another sign and being short winded going up stairs is not good either. There may be other signs as well that others have and a plain old pulmonary function test will tell you if your lungs are in bad shape. Hope this helps. AL.
 

davis06

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bulbar als

Al
I have bulbar als and my breathing sounds just like yours, bipap I youse just like you said. I was wondering did you start of with breathing problems, and can you still swallow good. I still swallow good but they want me the doctor at the clinic to get a
peg. Thanks, Davis
 

Al

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Hi Davis. I was diagnosed in Oct of 03 with limb onset symptoms. I didn't need the Bipap until Jan of 05. I can still swallow fine and talk but do notice getting a bit tongue tied sometimes. Are you losing weight? The docs will sometimes suggest a feeding tube if you are losing weight even if you can still swallow OK. They figure you can supplement your meals with the tube and it is there when you start having problems. Hope this helps. AL.
 

pamwagg

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Bulbar ALS and PEG

Feeding tubes, PEGs, are usually inserted before respiratory function goes below 50%, due to problems with anaesthesia encountered after that cut-off point. That may be why the doctor suggested a PEG even when swallowing is not a big problem. My friend J has bulbar and respiration of lower than 40% by now, just discovered as his disease is progressing so rapidly this was his first pulmonary function test. His PEG will be inserted on Tuesday but it is risky.

My question is, is anyone with primarily bulbar symptoms considering a vent? Why or why not? I need some advice to pass on to J. who is overwhelmed by the decisions that must be made soon.
 

terri

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John 1 made the response about speech sometimes improving. This has happened with LB. Two months ago, I could not understand half of what he was saying. The last few weeks it has been much better as long as he keeps his sentence short. A welcome change but hard to understand how that happens.

terri
 

shelli458

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My mom tried literally everything(ie'clinicals,health food etc.).She lived 1 and 1/2 yrs.she died July 7th.I am still in shock.She chose not to do the ventilator and I am so proud of her.What courage!
 

shelli458

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shelli458 said:
My mom tried literally everything(ie'clinicals,health food etc.).She lived 1 and 1/2 yrs.she died July 7th.I am still in shock.She chose not to do the ventilator and I am so proud of her.What courage!
"There are those who really live,and those who sleepwalk through life"was mom's motto,and she really lived that year and a half!
 

handinhand

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"There are those who really live,and those who sleepwalk through life"was mom's motto,and she really lived that year and a half!
Hi Shelle, I think your Mom was thinking of you. I was diognosed 4 weeks ago with Bulbar. I am having lots of trouble talking now . It was just two weeks ago that i noticed it in the afternoon. I feel alot like your Mom did. I want to live a quality of life for as long as I can. I want to do what ever it takes to do that,but i don't want to do anything that will get me to a place where my husband and kids have to do everything for me. Can you tell me a little bit about how your Moms progression went? I am also having trouble swallowing and breathing when I lie on my back. Wondering what will happen next. I feel sooooooooooooooo sorry for your loss,but i truly understand why she didn't want to extend her life for years being bed ridden... Of cours this is just how I feel. I think everyone is so different and I respect what anyone is striving for. Lin
 

BethU

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Terri ... you asked about speech improving. I found that when I have more energy in general, I am able to put more energy into my speech. I'm beyond the point where it does me any good now (my tongue has packed it in), but before it progressed too badly, speech therapy helped, as it showed me how to separate syllabals, and emphasize consonants, etc. And when I began taking a med for other bulbar symptoms (emotional lability), it improved my speech just from the overall boost in physical energy.

I do find that sometimes some other symptoms improve, too, despite what people say that ALS is a continual downward trend. I know improvements aren't permanent, but a week ago, I couldn 't use a paperclip if my life depended on it. This week, I can use them again. Several months ago, I had huge problems turning keys. In the last two months, I can use them again most of the time. Some weeks I can swallow better than in other weeks. Sometimes I can't sign my name, sometimes I can. I'm sure that our muscles are putting up a fight against ALS, and I think it's probably natural for things to change slightly.

Every case is different ... but I have experienced some small fluctuations, and am very grateful when they occur!
 

Lorie

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Progression

I know alot of PALS. Everyone has there own journey and time with this disease. My brother Tim's DX was in March 04. Over five years now. The Neuro's here think after talking with his Neuro's at Cleveland Clinic and John Hopkins. He has Atipical ALS. A very slow progression. They think he has had ALS for 12-15 years. I know someone who has been on a vent for ten years and his 26th anniversary just passed. It just depends on the individual.

Lorie
 
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