Progression question

[Judi]

Hello,

I understand that the progression of ALS is quite individual and, also, that people who experience speech/swallowing issues early have the worst outcome. Does anyone have information or know where I might find information regarding if there is a link to the loss of the motor skills for speech and the loss of the motor skills in other parts of the body? For instance, if someone's speech deteriorates quickly, does it also move to other parts of the body quickly after that or is this very individual? Does anyone know of people who may lose speech, but their other motor skills are maintained with perhaps "slower" deterioration? Thanks very much, J.

 

[CAHPAH]

J.
I don't have any information on links that might answer your question but my understandng is there really is no set pattern to the expression of ALS. It truely does effect everyone differantly. My wife was diagnosed on 07 with limb onset and next started on her lungs. Although she has twiching in her legs she still walks and has no trouble swallowing or talking (althoug as her lung capacity decreases so does her volume). Wishing you all the best.
Jim

 

[kedevlin23]

My dad had symptoms for about a year - started with different MDs treating each issue independantly - finally when he started losing his balance his PCP told him to see a neuro. 5 neuro's and 6 months later his final Dx was ALS.

He started with weakness in his left leg which would just give out and cause him to lose his balance and fall. Initial Dx was Parkinson's, but he was progressing too quickly - so they finally ended with ALS. March 2009 he was walking, June 2009 he was walking with a walker, Sept 2009 officially diagnosed, Oct 2009 he was wheelchair bound and still only experiencing issues in his lower lumbar.

Mid Feb 2010 he had a meltdown about not seeing his grandkids grow up, etc. We think he started to realize it was progressing to his upper body (but kept all of us in the dark) - weakness and tingling in his hands/arms. March 2010, he would not sleep in bed anymore, instead in his wheelchair upright - late march he was admitted to the hospital with chronic vomiting, he developed aspriatory pneumonia. the next steps for his long term care was a feeding tube and vent. He wanted neither. He was lucid and able to talk through the end. He passed 4/2/2010.

I had bought him a book on ALS when he got Dx'd and the day he passed away I opened that book and it was bookmarked in the respiratory failure chapter.

Funny you state that people with speech/swallowing issues early have the worst outcome - I've heard the opposite. One of the Respiratory Therapists who cared for my dad while he was in the hospital stated that her Dad was on a Vent and has had a Dx of ALS for 7 years. He functions normally and lives a great life, he just has a vent.

Good luck to you - I struggled the past year, the information out there just doesn't seem to be enough - while you can learn about the disease and the progression phases - it's totally frustrating in that you just do not know the time you have once diagnosed and how quickly it will progress.

I know there are many people who live many years with this disease and others who do not. I'm sorry that I don't have more information to provide to you other than our experience with my Dad.

 

[Robert Redmond]

My brother started noticing his problems in his legs at the end of 2008. I think by mid 2009 he wasn't able to get out of bed anymore.
By the end of 2010 the effects on his arms were noticeable and right now he is almost fully paralyzed from the neck down.
He started having breathing problems at the end of 2009. He has an oxygen line now and does breathing treatments every 4 hours but isn't on a vent yet but I think that is coming soon.

 

[trfogey]

Hello,

I understand that the progression of ALS is quite individual and, also, that people who experience speech/swallowing issues early have the worst outcome. Does anyone have information or know where I might find information regarding if there is a link to the loss of the motor skills for speech and the loss of the motor skills in other parts of the body? For instance, if someone's speech deteriorates quickly, does it also move to other parts of the body quickly after that or is this very individual? Does anyone know of people who may lose speech, but their other motor skills are maintained with perhaps "slower" deterioration? Thanks very much, J.

Be careful about how you are trying to apply general statistical information about ALS to any specific patient's outlook. Those statistics have wide ranges to start with and are often based on very old historical information that reflects much less effective treatment regimes used in the past. I'd even venture to say that most of the current statistics that we see quoted today are probably skewed significantly toward the "worst case" end of the spectrum, rather than toward the "average" case, simply based on newer therapies that were not available when those statistics were compiled.

 

[Robert Redmond]

Honestly what therapies can prolong it? As far as I can tell they have the one drug that doesn't do much, it is suppose to extend life an average of 2 months and doesn't seem to slow the progression at all.
My brother didn't get diagnosed until he was already in the last stage but I'm not sure what they could have done to slow it down. Maybe they could have made his ride downhill more comfortable.
It progresses at different speeds for different people but I'm not sure that the medical community can do anything to slow it down at this time.

 

[trfogey]

Honestly what therapies can prolong it? As far as I can tell they have the one drug that doesn't do much, it is suppose to extend life an average of 2 months and doesn't seem to slow the progression at all.

Not all therapies require the use of drugs. BiPAP is one such therapy. Aggressive weight maintainance through high-calorie diet and, if necessary, PEG nutrition is another. These therapies, while they cannot stop the progression of ALS by themselves, have been found to be effective in treating many of the effects of ALS progression and provide an improved quality of life for PALS as they progress.

It progresses at different speeds for different people but I'm not sure that the medical community can do anything to slow it down at this time.

Sometimes, merely enabling a PALS to live more comfortably at a given level of progression is enough to satisfy a need for effective therapy. Life extension is a worthwhile milestone to shoot for along the way, isn't it?

 

[Robert Redmond]

Improving quality of life and slowing down progression are 2 different topics.
I am all for anything that can make my brother's life better but what I really want is a cure or at least something to slow this thing down but honestly I don't see that happening.
I would try anything even if it had only a slight chance of working (read the methylcobolamin thread) but as of now I don't think anything has been proven just yet that can stop this beast.

 

[trfogey]

Improving quality of life and slowing down progression are 2 different topics.

We take what we can get, Mr. Redmond. I can assure you, however, that if BiPAP therapy were not available to me for the past couple of years, there is a fairly substantial chance that my ALS progression might have stopped naturally -- and not with a good result. The fact that I am here to engage in this discussion with you is proof enough for me.

I am all for anything that can make my brother's life better but what I really want is a cure or at least something to slow this thing down but honestly I don't see that happening.
I would try anything even if it had only a slight chance of working (read the methylcobolamin thread) but as of now I don't think anything has been proven just yet that can stop this beast.

There is no cure available, short of a divine miracle. Blunt and hard to swallow, I know, but it is reality. Now how do those quality of life issues look to you?

Therapies such as BiPAP and weight maintenance don't slow ALS progression, but they do alleviate some of the more deadly conditions that are fellow travelers with ALS. I think it's worthwhile to prevent those conditions and give myself a chance to try to live until the cure is found, but that is a decision each PALS makes for himself or herself.

 

[Robert Redmond]

I am very glad you are still here and still feisty

My brother uses the bipap machine as well, or at least I think that is what it is. Once he was diagnosed he actually was taken by private plane to Arkansas to live with his new wife so I don't know exactly everything they are doing with him atm but I am guessing the machine that he uses for breathing treatment (every 4 hours) is called a bipap machine?