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Jeanau

Distinguished member
Joined
Jan 21, 2015
Messages
341
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Pittsburgh
I know that this can be a delicate issue, but I also know that most of us here are realists and know the final outcome of having ALS. I'm not a rocket scientist but I am smart enough to realize that there are a lot of variables in the progress of our disease.

Because I had a lot of other physical conditions going on with gall bladder disease, we didn't even begin worrying about my lower limb symptons until October 20th of last year. I had my first EMG in November and was tentatively diagnosed with ALS by my neurologist. We were shocked. I had never even considered ALS. She then referred me to the specialist at the ALS Clinic for a second opinion. I met with the ALS specialist on December 31st. After he finished doing the EMG and going over my history, he told me that I definitely had ALS and most likely had had it for two to two and half years. Thinking back, it all began to make sense.

I've had a lot of progression (or regression depending on how you look at it) in the past three months with my walking and speech. I'm doing everything I can while I can, and am getting help from a PT, pulmonologist, my PCP, and the local ALS Society. My faith remains strong.

When I think about how long I might live, I've started to wonder if the date of diagnosis is the true date to consider...or should I consider the date of onset as a truer prediction of my life span?

Maybe none of the matters, but I want to be realistic with myself. Especially when so many decisions (a lot of them expensive ones) need to be made about what I might need in the future. I always find myself struggling with the question...will I even be around then...will the money hold out for care for me...is it worth remodeling the bathroom if I'm going to die in 6 months...and so on?

Am I the only one who thinks about these questions...or is it just one more thing about having ALS that we all understand and accept?
Thanks for listening!
 
You have from 6 months to 30+ years. Choose any start date you wish.

There are far too many variables for any definite answers and obsessing over it will only hasten things.
 
The literature says 2-5 years from diagnosis 80% are gone. Having said that Stephen Hawking has had it for 52 years. Who knows?
Vincent
 
Those are tough decisions, Audrey, and I wrestle with them, too. If your neurologist thinks you've had ALS for over two years, I would suspect you've had symptoms for at least that long? When they say that life expectancy is 1-5 years on average after diagnosis, I assume that means that the diagnosis happens not long after symptoms start. None of us can know for sure when we'll die, but if 80% are no longer living after 5 years, I think this helps to make some of the bigger decisions. (If you decide to vent, you could be around potentially for many years after that.) I'm sorry to hear about the progression, and I hope and pray it slows down. Your faith will help you through and guide you in making the right decisions.
- Charlene
 
Thank you Charlene...your thinking reflects mine. I will not be venting. I hope that I will hit another plateau soon, and can enjoy life with the small limitations that I have. I'm in no way giving in or giving up, but I am trying to be real with myself. Prayers are always appreciated!
 
I've heard the median is about a thousand days from diagnosis- say three years. Notice I use median and not average. The.average skews the number up because a very few people like Hawking live a long time. Sadly most don't. If your breathing starts to go like mine, then your time is probably on the short end.
I won't vent either, it would put too much strain on my caregiver and not stop the disease. Not to mention the cost. To put it bluntly we are screwed and there's not a damn thing we can do about it.
 
Another thing that can skew averages is the vent itself.

I don't believe the PEG skews the stats the same way as it may prolong life for some, but probably not for years like the vent. It certainly can prolong quality of life, but not always either.

This is just my opinion and only a bit of a guessing about at that.

The things that will most affect length of life in order of highest effect are:
1. When your breathing muscles fail
2. Aspiration pneumonia complications
3. Fatal falls and serious injuries
4. Starvation/dehydration

This is NOT an exhaustive list, but an indicative one.

2 and 3 in my opinion make the prognosis time the most difficult to guess. How does one guess whether an aspiration pneumonia may take a reasonably slow progressing PALS to a new level? I've known PALS to have a serious pneumonia and then bounce back, as well as others who went down suddenly as a result. Or the consequence of falling? Sadly we have lost PALS to head injuries.

Jeanau I just banked on how crap it was that my husband and I would 'only' get a couple of years more together. I knew he seemed to be progressing fast, but I did not have any idea what 'rapid progression' meant. I was stunned that we didn't even get a year.

Adding serious falls and aspiration pneumonias onto starvation for him only meant rapid progression became faster than I could keep up with.

I do think that this is one of the hardest parts of the many hard parts of this disease.

How do I live in the now, plan for best living abilities and yet plan ahead and be ready? It's a jugglers trick and it's all done with mirrors I'm afraid.

The fact is that a good percentage of PALS really do get several years and adapt their homes and find much in life to enjoy. There are many of these on the forum right now and they are my heroes. We just truly don't know which one we will be.

I think you look at what will be your highest priority needs and what seem like the next things coming and then find out are there cost effective ways to deal with them. I see so many eyegaze machines advertised for sale - barely used. Highly expensive items, and yet Diane H has shown us so many awesome tricks to use technology without all that expense. The same is often the case with home modifications. If you have VA to fund it, I say go for the lot. If not, some CALS here tell amazing stories of ways they made things work.

We did not do any home modifications and I'm so grateful as it all moved faster than a tradesman could have. But we had lots of great equipment from the loan closet here and all was done with a lot of love and care and most importantly dignity.

I'm so rambling, I may have to start thinking twice before posting now as April moves along, my filter is dripping wet.
 
Traditionally, older age, female gender, early weight loss and bulbar onset were most often associated with fewer years from onset [or diagnosis; there are studies using each as a milestone and they are all flawed] to death. However, recent meta-analyses conclude that this literature is too weak to consider reliable, given inadequately-incorporated interventions and largely retrospective analyses. Various blood and CSF values have been found in limited studies to yield better information but not yet enough to hang your hat or expectations on.

For now, each person is her own baseline but the line from there is not straight. Your best marker for survival at the moment is your current status, including the ability to move air, take nutrients and avoid falls, all with or without mechanical aids.

The one expectation that I would advise a P/CALS to have is that [one of] you will likely need to be alert, aware and engaged to have the death you prefer. IMHO, it's more important to know that -- sorry, life isn't fair and neither is death -- than to keep guessing when that time will come. I also think most of us, as advised earlier, would caution against large questionable expenses and decisions (e.g. moves, remodels, vehicles) unless they have an upside no matter how soon steep decline or unexpected death comes.
 
I've wondered about remodels, equipment also for my husband. Have received help in some small changes, ramps, grab bars,etc from wonderful co-workers. Working for the big orange box, there are thankfully many handy(persons) available. I have been tossing around the idea of bathroom remodel and have willing helpers just waiting to volunteer.
He has chosen also not to vent so we just take it day by day and improvise as needed.
I choose not to think about how much time is left but I know he wishes for it to be over daily. The time will come when it comes and I don't think a doctor saying " oh you have 6 months or 6 years" is anything realistic or helpful as you seem to the only count the days as they pass instead trying to live them in the present.
 
Jeanau, we where diagnosed around the same time. My diagnosis took about 1.5 years, and looking back, I had symptoms before then that I probably just put off as part of my training fatigue or injury. I can not speak for all PALS, but I have asked myself all the same questions that you ask here. While I know the true answer is that we have no idea, that is of no help at all, and seems some how cruel and trite.

If it helps, I have tried to begin thinking in terms of quality of life rather then length of life. As I began with respiratory onset and do not think I want to put my loved one through the financial or physical torment of the vent, I suspect my days are short. So in the mean time I have determined that I am going to use any energy I have for things that will help my wife when I am gone. For me this means that yesterday I wore myself out building her a spot for a basketball hoop (it is one of her stress relievers). Or trying to remodel the house, not for handicap me, but for comfort for her. It means planning (in the short term) inexpensive vacation that we can enjoy.

Yes I know everyone talks about energy conservation, but why? So I can have more time sitting on my rear doing nothing! No, I am going to DO! I always have and I am not going to stop. Yes I have had to slow down as my body fails and it is hard to get away from the BiPAP. But I can still do and I will.

Now I'm the one rambling.
 
I believe the statistics are usually done with time to death or vent. There are people who live 10 years unvented and even a little mobile. One of the ALS researchers I know says he has 10 yr patients walk into the exam room ( not pretty but under their own power)
And people are living a bit longer and better quality with early bipap and feeding tubes. I see this with my FALS friends that they consistently outlive the relatives that went ahead of them.
But I agree giving more than a passing thought to statistics isn't going to help us
 
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Pete, the conserving energy, to me at least, is really about quality of life. Don't waste you energy on things that will just drain you, but on the things that will make you happy.

I will make an example, I'm not saying this is you, the word 'you' is used as a collective word.
So if you spend all your time dressing yourself, getting to the toilet, eating a meal, and have no energy left over, you are not using your energy wisely, you are barely surviving.

If you were to let someone help you dress, used walking aides or a urinal, had assistance with a meal, and then could spend the rest of the day out enjoying things with your wife, that would be wise conservation of your energy.

Laurie put it so eloquently - quality of life is the most important thing for every person really. Whether you have a day left or a decade, and for the CALS it's the same. Make all the quality life you can, conserve energy to enjoy the quality stuff and one day in hindsight it will be known how much time you had left for it.
 
I had a preliminary diagnosis in 2009, a definitive diagnosis in 2011 and I'm still here. We are each so very different. Mine started in my right hand and I've only been in a power chair for two years. I think falls are very dangerous and I believe I can still self transfer because I haven't been trying to walk. I am incredibly lucky that I have long-term care insurance so I have an aide with me from 8 to 5 Monday through Friday. Tilly is right of course, spend the time on things you love and don't bother with the other stuff. Don't waste energy, just use it wisely.
Hollister
 
Thank you all for your thoughtful replies.

I'm structuring my life around the things I enjoy doing, and being more careful in pacing myself and using my energy. Life is still good in many ways!
 
Tillie,
You have voiced what I try to do on a daily basis. It gets mixed in with my PALS thoughts that if he lets someone dress him or help him he is letting the disease win. I think we win over the disease when you problem solve to allow travel, or walks and the things we love to do. Oh the role of caretaker is such a balancing act. the mixed message of do everything for me and do not hovers also the fine line. My husbands passion for writing has been a godsend. I asked him permission to show the group a story he wrote in honor of our good friend who passed away from ALS. It looks back on his own diagnosis and how angry he got with me......sound familiar, when what was going on was his own fear/denial of what was to come. I hope he will let me post the story.
It is finally a sunny day and Kosmo (our dog) and I will be dead heading and getting the gardens ready. This is my therapy.
 
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