Old 05-16-2017, 09:38 AM #1 (permalink)
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Default difficult neuro visit

Yesterday we had our quarterly visit with our neuro. My sister in law and I spoke to him for a brief moment without my PALS being present. The neuro said that my PALS "will not live to see the end of the year." His FVC was at 20% three months ago, it was not even tested this visit. I said to my neuro, "I thought that he could go on indefinitely with proper PEG nutrition and use of the non-invasive ventilator until he got an infection or something." He said no, his lungs would fail even while on the Trilogy.

It is always shocking to hear it put like this -especially since he said it so directly- and it was a wake up call. Because my PALS was doing so well on hospice at home (gaining weight, avoiding falls, etc.), I thought we had stabilized the condition but I was only fooling myself - it is evident the neuro saw further progress and he even directed me to start using morphine when I notice my PALS is hungry for air. I am devastated and trying to brace myself for what is coming.
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Old 05-16-2017, 11:05 AM #2 (permalink)
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Default Re: difficult neuro visit

Manhattanite - I am so sorry for your tough visit. One never knows and this is a best guess by the Neuro. Just enjoy whatever time your have and make wonderful memories.

Hugs,
sue
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Old 05-16-2017, 12:29 PM #3 (permalink)
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Default Re: difficult neuro visit

Just keep loving him, making sure he is well nourished and hydrated and take your cues from him.

I know a PALS that has been at 15% for a year now.
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Old 05-16-2017, 01:43 PM #4 (permalink)
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Default Re: difficult neuro visit

Thanks Kim and Sue. So much to deal with. And then I am facing the stress that our hospice initial 6-month period ends in early September if my PALS lives beyond that. I worry hospice will kick us out but I think we would obviously have the support of our neuro to justify staying on it if needed. I shouldn't worry about those things but you guys know what it is like when all these little things add up.
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Old 05-16-2017, 02:21 PM #5 (permalink)
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Default Re: difficult neuro visit

Hospice will most likely require another form signed by your doctor. I've known PALS who have been in hospice for over two years. Some even go out to have surgery and right back in.

When it gets closer to September, ask Hospice what you need to do to renew your participation.
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Old 05-16-2017, 03:10 PM #6 (permalink)
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Default Re: difficult neuro visit

As others have commented, I don't know what informed this prediction and people live for quite a while with a low FVC. While the Trilogy doesn't stop progression, as you noted, it can slow it down.

When/how to use morphine is between you and your PALS. If air hunger presents more as coughing, a codeine syrup may do as well or better.

Best,
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Old 05-16-2017, 03:55 PM #7 (permalink)
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Default Re: difficult neuro visit

I don't know what informed the doctor's prediction either but part of me feels that it will be a blessing if my PALS passes before reaching a locked in state. As I have mentioned in other posts, he is too passive to make the decision to cease all nutrition and ventilation. We are waiting for nature to take its course (although it is a course that has gone beyond what nature intended).
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Old 05-16-2017, 04:36 PM #8 (permalink)
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Default Re: difficult neuro visit

I am so sorry that this was such a shock and even more sorry that this disease has marched into your life, as for all of us

I hope you can breathe and remember that today is all any of us have. They will enlist you for another 6 months of hospice so that is something. Just keep loving him, and be kind to yourself as much as you can. 💜
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Old 05-16-2017, 05:19 PM #9 (permalink)
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Default Re: difficult neuro visit

Most PALS do not reach a locked-in state. But I would be concerned with establishing his wishes in whatever form so you can feel confident about implementing them later, if needed.
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Old 05-17-2017, 07:34 AM #10 (permalink)
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Default Re: difficult neuro visit

Manhattanite,
I am sorry to hear what the neuro said in your last visit..... My husband is in the same stage, but I think he is getting closer to be in locked in state. I have asked the respiratory guy to give me a time frame and he said he would give him 3 solid months, but the hospice nurse says probably a year.... I am just asking God for mercy on us because I don't know how long I can hold.
Big hug to you and your PALS
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Old 05-17-2017, 10:08 AM #11 (permalink)
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Default Re: difficult neuro visit

I forgot to add the neurologist said my PALS has "severe" FTD. He has mentioned FTD many times in previous visits but I always sort of set it aside. But now I see so much of it when I read FTD threads here. My hope is that FTD prevents my PALS from fully realizing what he is going through and perhaps also explains the "passivity" I see in his approach to the disease.
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Old 05-19-2017, 12:01 AM #12 (permalink)
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Default Re: difficult neuro visit

Manhattanite, it doesn't seem to matter we know what the ultimate prognosis is or how long we live trying to wrap our head around that; when the doc puts it as he did, it is heart wrenching. I am so sorry you (or anyone) are faced with that. I fully relate to your thoughts about FTD causing the passivity...but perhaps shielding against the painful reality of loss. I find that lack of awareness a very bright silver lining to the storm cloud that is ALS. Hugs and warmest thoughts go out to you.
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Old 05-19-2017, 01:16 PM #13 (permalink)
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Default Re: difficult neuro visit

Tough stuff, I am so sorry you are going through this. I have heard many tales in ALS of Dr. Predictions being far off on either end of the given timeframe, which I know just makes for more uncertainty.

Our Dr. Said symptoms of FTD usually present in the 1st year before or after diagnosis or not at all. I guess that puts Brian theoretically at least out of the woods for that, but some days I am not sure his sharp mind is a plus in this situation.

Thinking of you.
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Old 05-19-2017, 02:38 PM #14 (permalink)
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Default Re: difficult neuro visit

I would say that if the PALS 'has FTD' then you would most likely have seen this start before or in conjunction with the MND.

HOWEVER, 50% of PALS will experience some degree of cognitive decline.

CO2 retention will also affect cognition and even behaviour to a degree, but differently to true FTD.

Manhattanite how are you doing now as you both process (or try to) what was said at this visit?
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Old 05-19-2017, 03:40 PM #15 (permalink)
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Default Re: difficult neuro visit

Not to mention PALS who are severely depressed. Depression can do all kinds of things to one's mind. I was diagnosed with severe clinical depression in 1999 (along with fibromyalgia) and it got so bad I couldn't read. I could say the words but had no comprehension. Fortunately, Remeron was my magic bullet for depression and also helped me to get above 100 pounds.

I think both CALS and PALS should be evaluated for depression because it presents so differently and makes everything so much worse.
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