Wife diagnosis ALS

bluemeanies

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07/2021
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Hello my wife has just been diagnosed with ALS.
Her symptoms unknowingly ALS started about two years ago maybe 1.5 years
Problems with walking, balance issues, tingling in ear sand soon after breathing issues. She is 68 years of age. Her wishes after six weeks in hospital for a diagnosis and two weeks in a poor nursing home of which I just about lived there b/c of bad care were to go home and be comfortable for whatever time she had left.
Her muscles are very weak in the lower extremities and weak in the upper extremities with a diagnosis of a poorly working diaphragm. We were told that the diaphragm is working less than optimal..less than 50%!
She is on a self breathing ventilator which she is on about 15 hours a day..progressing from 3-4 hours per day.
With are of this we still were not given any kind of time frame . We know NO ONE can give us an exact time, day, or hour however what would be a conservative guess? We want to make plans for the inevitable and clean house so to speak.
Does anyone have a thought on this question?
I am suspecting from what I have read that my wife’s case is advanced…WE agree that her time is limited and my wife feels she will not be here for the holidays.
We just celebrated our 49th anniversary..
Very hard to get through is and watch a loved one suffer.
thanks to all for just listening..
All comments are welcome,
b
 

Nikki J

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I am very sorry. It is true that she is advanced for just being diagnosed but it is not clear that she is endstage from what you wrote.
is she still able to move her extremities? Is she swallowing ok?

The 2 things that kill us directly are starvation/ dehydration from being unable to swallow unless a feeding tube is chosen And respiratory failure. Less than 50 percent sounds ( and is) awful but people can live with a valuebelow 50 for a long time. My sister lived more than 2 years. It depends on rate of decline. Some people stabilize for a while on bipap. It also depends on underlying health.

truly noone can tell you. After observing her progression the doctor might have an educated guess but it is still a guess
 

affected

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I'm so sorry to see you join us. It is truly awful to adjust to being told this diagnosis.
We can walk with you and help you adjust and make life as full of quality as possible.
 

lgelb

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Very sorry to welcome you here. As Nikki says, with a feeding tube provided when needed, appropriate mobility devices, and optimal BiPAP settings, your wife could live for some time, even years.

The important thing you can do is not to watch her suffer, but to bring her comfort (people, places, things, activities, adaptive aids, etc.) however and whenever possible. There are many ideas for that here, but ask us anything.

Best,
Laurie
 

bluemeanies

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Thanks all for replying…hope this clears some things up..my wife decided she does not want any extreme measures such as a VENTILATOR and feeding tube. Her upper extremities like her hands and arms are very weak. she has trouble brushing her teeth with an electric toothbrush. Her head has been drooping for months and now she cannot lift head head up to even talk. Her speech is weak and at times hard to understand. She has to take her meds with applesauce. She cannot even lift her head to drink water. Her swallowing is labored and her meals are small..sometimes she does not eat.
We were told that b/c of her diaphragm being in poor shape the ventilator that she is on now probably will not be able to do the job as her diaphragm gets wesker.

we have been married 49 years this pass August 19th..I don’t want my wife to die but we both know it is inevitable…We both feel laying in a bed the rest of your life is NOT a quality way of living. We also know that there are people with this disease that are just glad that they are alive..and we respect that decision for those people but we are not open for that in regards to my wife.
 

Mary2

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Sorry to welcome you here bluemeanies. 49 years of marriage...years that you have shared together in troubled times and in good times. Hopefully you can still find some special moments together even as you make the necessary medical decisions and prepare to say good bye. My husband and I find it important to spend a little bit of time each days doing an activity apart from his care. I read to him..we listen to music..we watch a tv show together...just something to take our minds off the ALS diagnosis.
 

lgelb

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Blue, for 99% of PALS, the kind of breathing support machine that does not "breathe for you" can do the job fine up to the very end of life, with the proper settings. Let me know if you need help with those.

A soft cervical collar may help support your wife's neck, even if she does not use it all the time. With a wheelchair, she could still go out with you.

Most PALS, including those with feeding tubes (which most do not consider an extreme measure and many use comfortably for years), do not lie in bed all day, either. It sounds like some of the information you are getting may be somewhat dated. I understand the diagnosis is a shock, but there may be still be good time left for the two of you, if you choose that, and it is only wise to know the reality of the tradeoffs you are making.

It really isn't true that most P/CALS here would consider "just being alive" enough reason to stay that way. Everyone has their own definition of when life is no longer worth living. I just want to make sure yours is fact-based.
 

Miss

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Oh, I so agree with Igelb! I believe that you might be receiving outdated information. No blame assigned, ALS is a rare disease, and many wonderful, trained professionals just are not familiar with its special needs.

The feeding tube is definitely not an extraordinary measure! My late husband was vehemently opposed to a feeding tube until I had him watch a video of someone starving to death. He immediately got one and then did not need to use it for over a year. But, oh what a blessing it was when we did start using it. It just made hydration so much easier on him!

As Igelb said, wonderful equipment is available to help make life more comfortable for your wife. The headmaster collar [link removed] is solves the issue of neck instability for so many ALS patients.

The BiPap gives comfort. It is not an invasive breathing support. It will actually give your wife more energy if used regularly. It is very akin to a Cpap except that it does not give constant presure (C-constant Pap) ~ it "relaxes" (Bi) so that your wife will not have to fight against pressure to release a breath. We found that the best way to get used to it was to put it on while watching a familiar movie. Within minutes, my husband got into the "rhythm" of it.

My late husband lived with an FVC less than 50% and only the use of 1/2 of his diaphragm for almost 2 years. He never spent one day in bed because he had a PEG and a BiPap. He had energy from the hydration and supplemental feeding from the PEG and the energy that the BiPap gave him from getting full breaths. Neither of these extended his life. They just made the quality of his life better.
 
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lgelb

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Miss, it's great to see you on line again! Congratulations on your social work degree and I'm sure the ALS clients you help benefit from your experience.

Just to clarify for others, there actually is research now that BiPAP and a feeding tube if /as needed (we often say RIG instead of PEG because tube insertion by a radiologist is recommended in ALS) extends both quantity and quality of life, and that's why both are part of the American Academy of Neurology (AAN) ALS treatment guidelines.

These guidelines are somewhat dated themselves, so, for example, they don't incorporate newer studies about starting BiPAP sooner than an FVC of 50% or less, and doing the feeding tube in radiology rather than surgery, and how even very low FVC-PALS can usually get a tube safely.

But at least they do make the point that most P/CALS are better off with a few interventions to make life better, (a power wheelchair, hospital bed, and a power patient lift being three obvious others), in addition to appropriate medications, giving them a stronger foundation to make the choices on which opinions more often differ.

Best,
Laurie
 

JimInVA

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My wife was adamant when first diagnosed with ALS that she would not have a feeding tube (PEG). When it came time for her to make that decision, she was still determined NOT to have one. She didn't want to have something that would extend her life beyond a point in time that her Quality-of-Life (QOL) was no longer acceptable. I told her that MY concern was what I would do when she could no longer swallow by mouth. She had medicine that she took morning and at night. Without the PEG, I might be unable to give her meds. I told her that she might need something (like pain meds or something to help her sleep) while she was still feeling glad to be alive for another day... but without the PEG, I'd be unable to do so.

So I asked her to reconsider the PEG's insertion. I promised that I would do nothing with the PEG (food, meds, liquids) without her consent. If she didn't want to use it, we wouldn't. Her greatest determination was the she didn't want it to be used to feed her when she could no longer swallow. I told her that all I wanted was for her to have options later in her ALS journey... HER options... HER CHOICE. So she agreed to having the PEG inserted.

I promised my wife that I would try to make every TODAY good enough that she'd wake in the morning and be grateful for another TOMORROW. From first can't ignore symptoms of ALS, Darcey lived one month shy of 8 years. She did not anticipate that she would last that long AND that her QOL would still be acceptable. Part of what allowed her to continue to enjoy so many days while living with a terminal disease was that the PEG gave her choices. At first, we only used to do every other day flushes. Then, when it became difficult to swallow meds, she started taking them crushed through her PEG. Through time, she expanded to taking all liquids through her PEG and later a liquid food source.

The weekend before Darcey would leave us, we talked about all that has happened on this ALS journey that we'd been on. She told me just how much she appreciated the fact that I supported all of her decisions... with the exception of the feeding tube. And for that, she thanked me for being courageous enough to explain to her MY side of the equation (that of being able to give her the medicines that she might need), yet still promising to honor whatever choice she made. She said that without that discussion, she would not have gotten a PEG. And had she not gotten the PEG, her life would have likely been much shorter and not nearly as fully good as it was. She said, "Getting the feeding tube was one of the best choices that I made during my time with ALS. Thanks for encouraging me to reconsider that choice so many years ago!"

I hope you all are able to determine and make the choice that is best and right for you.

My best...

Jim
 
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