Old 04-03-2011, 11:06 AM #1 (permalink)
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Default Asked and.... Answered?

So far my limited experience has shown that one of the most difficult questions to ask your ALS doctor is: "How much longer do I have?"

I believe that this must also be a difficult question to answer sincerely without many evasions and generalizations; especially since with a trach and vent, theoretically the answer is not possible.

My Doctor is a very compasionate person. The closest he has answered is to say that since the progression is linear, you can find points on a timeline and then make some projections. With only two clinic visits, this is not yet a very exact thing yet for me.

The closest I have come is to do a schedule on a calendar. In my past professional life I am used to doing this for construction events, so I am familiar with charting my time in this fashion.

Basically, I took the first remembered onset of symtoms ...subjective and inexact; as about a year. Then I tried to look at where my legs are in terms of current use effectivness vs. non-useable or ineffective. This first milestone is an attempt to look at when I will be into a wheel chair. By looking at the % of progress to this milestone verses the one year of time to reach current status; I made some projections based upon hearing that I may be more towards the PLS side of the disease. Very inexact; and it will change as more time passes, but it did give me some planning information in regard to: "if I want to make this or that trip or do this event, I had best do it by this point in time".

In this regard, I hated going to the clinic. But; a dose of reality makes for more clear vision I guess. Just some rambling thoughts that I thought I would share.
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Old 04-03-2011, 09:40 PM #2 (permalink)
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Default Re: Asked and.... Answered?

I was diagnosed last August and have had fast progression. I asked my doctor about life expectancy last week and he said he does not think I will see the end of 2011. It was hard to hear but at least now I have a time line even though only God truly knows my hours. I hope yours goes very slow.
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Old 04-03-2011, 10:15 PM #3 (permalink)
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Default Re: Asked and.... Answered?

That's probably a pretty good way to go about it. Illness can totally throw a wrench in things. Also towards the end, it is quite common for your progression rate to speed up. Or also peak and valley. According to our ALS social worker.

We also have made similar projections as you have. Like if we want to take this trip to see the relatives on the other side of the country. Or similar.. we'd better do it now. The time has come and gone to think about it. There may not be a tomorrow for much longer.
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Old 04-03-2011, 10:30 PM #4 (permalink)
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Default Re: Asked and.... Answered?

The same thought goes through all of our minds. The truth is the Dr's don't know. I imagine as our breathing deteriorates and if we would refuse a vent then they can predict an estimated time. I personally find it fruitless to allow those thoughts to monoplize my mind, not that they don't enter my mind from time to time. I know it is very cliche but none of us are promised tomorrow. Now before anyone states the obvious of course I would take my chances without ALS. That being said I do not want to become bogged down worrying about some mysterious end date and allow that to consume me and influence my attitude and behavior and then tomorrow die in a car wreck.

There is nothing positive about this disease but I am grateful for one thing. It has allowed me to come to grips with my own mortality. I do not belive most people get that chance to do that, especially people my age. It forces you to appreciate each day, heck each momemt, every interaction with a loved one, to stop and admire the sunset, to listen to the sounds of nature or the laughter of children. To enjoy time spent with friends or helping a stranger or making someone smile. I enjoy every laugh, every cry, every hug much more then I used to.

It may sound crazy but my attitude is this, when the Doctors told me I had a terminal disease all they did was confirm something that was true since the day I was born, that I am going to die one day. None of us get to pick how we are going to die, people much younger then me die every day, people who are lonely and don't know love and happiness in their lives die everyday. I have a great life and don't ever want it to end, but I do know this, when it's my time, I wouldn't trade my life with someone who lived to 100.

To me the question isn't how much time do I have left but instead my thought process is thank goodness I have time left because I do not want this ride to stop! The ride will stop for all of us eventually.
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Old 04-03-2011, 10:53 PM #5 (permalink)
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Default Re: Asked and.... Answered?

I'm one who would like to know approximately how long I have, but I don't think my demise can be estimated very accurately. linearly I'll reach zero on the functional rating scale in roughly a year or so according to their chart.
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Old 04-03-2011, 11:59 PM #6 (permalink)
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Default Re: Asked and.... Answered?

TedH5 very wel said remind me of this song YouTube - Broadcast Yourself. IF TODAY WAS YOUR LAST DAY THIS SONG HITS HOME FOR MANY OF US.
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Old 04-04-2011, 07:35 AM #7 (permalink)
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Default Re: Asked and.... Answered?

The neurologist said very definately Feb 2nd 2010 that my husband had only maybe months to live. Palliative care(hospice) stopped all our allied health. The wheelchair which needed modifications only got a basic once over all because they were convinced there was no point and when I asked for help with sputum/saliva call it what you want, it was like I was in denial and not facing his mortality. Guess what, he stabilized quite well by June and we are both still here now and I have had to get everything reinstated. So from my viewpoint, giving you an end date can cause alot of harm.

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Old 04-04-2011, 10:45 AM #8 (permalink)
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Default Re: Asked and.... Answered?

Ted, I have the same kind of outlook as you expressed so well here. I am learning that i can live more in a few minutes, being totally aware and of my mortality, then I did with years in the past. To be aware of the approaching end of life, makes me come alive in ways that i never would have dreamed. I cling to the present moment in all its richness, and forget about the rest. One moment I will cross over into eternity, and I believe life continues in the Spirit.

Rox, I feel for you and pray for you. Fast progression is scary. May God surround you with courage and peace, and the love of family and friends.
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Old 04-04-2011, 12:21 PM #9 (permalink)
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Default Re: Asked and.... Answered?

I have no insight on how to reliably predict how much time is left. Perhaps it's not possible to read the signs until near the end? What I have been aware of in terms of functionality with my pals is that from onset of a symptom to no functional use in that area has taken roughly the same number of months each time, irrespective of where in the body. However, never knew what area was coming next. Projections aside I'd say if there's someone you really want to visit or something you want to do, and you are able to, just go for it.
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