General Life Expectancy Question - Page 2

BethU · 05-06-2009, 08:53 PM

Hi, Leekygirl ... I'm so sorry that your mom has been dx with MND ... and also that you lost your dad just 4 years ago.

I'm glad you are getting good support for your mom's care. As far as other countries, the most help we get in the US is from charity organizations. The Muscular Dystrophy Assn. is especially helpful with expensive equipment, and ALSA helps enormously with equipment, information, support groups and personal support. Other than that, it's often a battle with the insurance companies.

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ALR269 ... I don't think anybody can really give you an estimate, because nobody knows. Patients live longer with a trache than without, and your mother is still young enough to regain some strength once she's out of the hospital setting. The best thing that I can think of with ALS is to hope for the best and prepare for the worst. Hopefully, when she's in hospice care, she will be comfortable and much less stressed than in a hospital.

Marjorie R. Wilcox · 05-07-2009, 05:43 PM

I like that, Beth ...."Hope for the best but prepare for the worst." That says is all.

beccag · 05-28-2009, 09:22 AM

we have a similar situation...and at this point...when they are on a trache, and not able to eat or drink...it cant be long. once you see signs of end of life...(general) you know it will be short...hours...
hang in there...we're trying to too...
sincerely,
becca

joelc · 05-28-2009, 12:31 PM

Quote:

Originally Posted by beccag

we have a similar situation...and at this point...when they are on a trache, and not able to eat or drink...it cant be long. once you see signs of end of life...(general) you know it will be short...hours...
hang in there...we're trying to too...
sincerely,
becca

I am not sure I am understanding you correctly. Are you trying to say that once a person has a trache they won't last long? If that is what you are saying you could not be further from the truth! A trache can extend your life indefinitely. What kills people with ALS is respiratory problems, with a trache this problem is gone. You get nourishment from a PEG (feeding tube) and air from a vent - life is good!

Xavier CARRANZA · 06-26-2009, 08:03 AM

My wife was DX this month with PBP but looking back the symptoms started 2 yrs and 3 months ago. she has lost 60 Lbs. in the last 5 Months, she has lost her voice completly and has trouble swallowing and her reflexes are slow she has a hard time getting up when sitting. she says that she is not ready for a feed tube yet. She still cooks, clean house goes out and feeds the chickens and cats. This requires climbing stairs. as of now the Dr. has not recommended any type of therapy. Is any body familiarl with Oriantal PBP therapy? May God Bless all of you. Xavier Carranza

hopingforcure · 06-26-2009, 02:13 PM

Welcome to the forum.. Many of us love animals, glad to hear you have some.. Chicken's and Cat's, how cute. I do not know of any such therapy. So far not anything for any form of mnd, hoping one is around the bend..Again welcome.

Big Mike · 06-27-2009, 12:29 AM

Quote:

Originally Posted by joelc

I am not sure I am understanding you correctly. Are you trying to say that once a person has a trache they won't last long? If that is what you are saying you could not be further from the truth! A trache can extend your life indefinitely. What kills people with ALS is respiratory problems, with a trache this problem is gone. You get nourishment from a PEG (feeding tube) and air from a vent - life is good!

I just don't know why the trache and vent get such a bad rap from the medical community. As long as you can adapt the the changes, you can have a good quality of life for quite sometime. Of course, advanced directives are necessary for when the disease may progress too far, such as the eyes (10-15% of cases), or if you become too uncomfortable, or if you begin to suffer from another serious illness. Such directives can allow you to opt out when you feel it is necessary. Chariie Wedemeyer has lived successfully for over 30 years with the disease, and 25 of those years have been on a ventilator!

Additionally, if more PALS would opt for a trache and vent, we would live longer, and pharmaceutical companies would take more interest in developing drugs for our plight.

GlenBrittle · 06-27-2009, 03:56 PM

Joel, I agree with you . Looking at the big picture , I see many more positives than negatives when looked at logically.

Big Mike , I think most people associate , IMO , the trach/Vent/PEG as being on deaths door , because the people you usally see are just that - at the door , where it cant help much. I see cancer people , lung problem people , others with these devices and think the same thing. With ALS its different. Its the lack of muscle response that causes us the get these tubes. The lungs are still good if they get air, the stomach still works if you give it food. I fear that I might need two tubes ... I love to eat.

my .02.

Glen

joelc · 06-27-2009, 07:11 PM

Good points guys!

I have said many times that if more PALS chose to have a vent there would be as many of us living as people with MS and the drug companies could no longer ignore us.

Also, if PALS chose to get a trache before it was an emergency there would be many more success stories like mine.
As has already been stated above, there is nothing wrong with our lungs, it is our diaphragm that is too weak to inhale air.

Big Mike · 06-27-2009, 09:05 PM

Quote:

Originally Posted by GlenBrittle

Joel, I agree with you . Looking at the big picture , I see many more positives than negatives when looked at logically.

Big Mike , I think most people associate , IMO , the trach/Vent/PEG as being on deaths door , because the people you usally see are just that - at the door , where it cant help much. I see cancer people , lung problem people , others with these devices and think the same thing. With ALS its different. Its the lack of muscle response that causes us the get these tubes. The lungs are still good if they get air, the stomach still works if you give it food. I fear that I might need two tubes ... I love to eat.

my .02.

Glen

Good point Glen. I hadn't thought about it in that way.

Anastasia · 09-09-2009, 12:25 AM

I guess its only natural to at least wonder how much time we have with those we are caring for and you dont need to be thinking your question is blunt. Life and death are realities .My family have only been aware of Eds diagnoses since July this year so we are new at this ,however I am beginning to get the picture of what some of you have been through.
My thoughts are with you and I hope the responses you have received have been of some help, cheers.

BethU · 09-09-2009, 01:25 AM

Of course, advanced directives are necessary for when the disease may progress too far, such as the eyes (10-15% of cases), or if you become too uncomfortable, or if you begin to suffer from another serious illness. Such directives can allow you to opt out when you feel it is necessary.

Big Mike, it has been my understanding that once you choose to vent, you are forced to live with that decision until something else kiils you. I was told (or read? or imagined it?) that a patient cannot have a vent removed simply for personal reasons ... that it is considered "suicide," and doctors and care facilities won't remove it for legal reasons.

If you are correct, that requires a great big rethink on my part. I have wished there were a way to at least try it and see what actual improvement there is in quality of life.

Al · 09-09-2009, 11:29 PM

My Bipap hose popped off this morning. I could have crapped out if the homecare lady had been out of the room(she wasn't) My last test of FVC a year ago was 10% laying down. Don't think I'd last long. My point being that all sorts of stuff happens. I used to joke that I was training the dog to pull the plug on me when I gave him the signal. Lots of stuff could kill you. That would be the least of my worries if I was choosing to vent.

AL.

indigosd · 09-11-2009, 12:11 PM

OH, lolol AL-Your absolutely toooo funny! I am NOT going to tell this one to DH or he will be training his hunting dog to learn that signal!! I can never tell all of you how very much you inspire me and delight me. I am so appreciative of your calm, matter of fact, HONEST and often hilarious responses. Big Mike hit the nail on the head with his statement, "Additionally, if more PALS would opt for a trache and vent, we would live longer, and pharmaceutical companies would take more interest in developing drugs for our plight. " Along with joelc, "I have said many times that if more PALS chose to have a vent there would be as many of us living as people with MS and the drug companies could no longer ignore us.

Also, if PALS chose to get a trache before it was an emergency there would be many more success stories like mine.
As has already been stated above, there is nothing wrong with our lungs, it is our diaphragm that is too weak to inhale air. "
I am PROUD to belong to this FABULOUS group of people! Look at what you have accomplished and the lives that you touch every day!
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