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berlies

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Oct 16, 2018
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Loved one DX
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My MIL started showing symptoms in June 2018. It started with back pain and slurred speech and progressed from there. In August she needed a cane to walk, and by September a walker. We had began seeking answers from her PCP and a Neurologist who couldn't give us any answers. The only thing definite was a pesky UTI that wouldn't go away.

In October, she took a fall and was rushed to the ER. It was there that ALS was brought up as a potential diagnosis. She remained there for 2 weeks while test after test after test was run. Trying to find ANYTHING that could give us answers. ALS remained the probably diagnosis, but were instructed to go to an ALS clinic to confirm. The earliest appointment we could get was January.

She was moved out of the hospital and into a Rehab Facility where she was now in a wheelchair a majority of the time, but able to do short walks with a walker. She was doing PT, OT and ST nearly every day, but simple tasks were getting harder. She couldn't lift her legs to swing them into bed. She didn't have the strength to adjust herself when laying down.

In November, we moved her into an Assisted Living facility. Her speech continued to decline, she started having more coughing/choking spells. She could no longer ambulate from the wheel chair to bed, or to go to the bathroom.

January 8th - we finally got an official diagnosis for ALS, and right off the bat they wanted to schedule surgery for a feeding tube as soon as possible. Her respiratory function has declined so much that if it drops any further, she wouldn't be a candidate for surgery.

Obviously - from the progression of her symptoms from June, until now - this is moving quick. I know her wishes is to not be put on a ventilator, so I know our time is limited. I've been lurking on here for awhile, and have seen others talk about their timelines - and from what I've read it seems that this is moving uncharacteristically quick. It's heartbreaking.

My husband has been a saint during this whole process. He has taken care of all the arrangements, paperwork, appointments, brings her meals, helps her to the bathroom, into bed - everything. His Father passed away while he was a senior in high school from Cancer - a short 6 months after diagnosis. His parents had divorced and he lived with his Dad, and had to become his caretaker pretty quickly. He had to cook and clean, help him go to the bathroom, and shower, had to arrange hospice, and funeral arrangements, sell off his assets - all before college. And now it seems like the situation may be repeating itself.

So - I guess I have two questions. How much longer do we have with her? And second, what is the best way that I can be there and support my husband. This is unlike anything I've ever dealt with - and while I love my MIL and am close to her, I know that I can't imagine what my husband is feeling. He's going to lose both his parents to rapid violent diseases. It sucks.
 

lgelb

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Very sorry to hear about your MIL. You say she does not want a ventilator. What about BiPAP? If she gets a feeding tube, she will likely still have considerably longer with you if she gets a BiPAP when she needs it (which may be now -- has she had lung tests? Those would affect any "how long" estimate.)

One note about the feeding tube -- is it being done in radiology? There is no need for "surgery" unless she has other GI conditions, and it could be dangerous.

But you're right, overall, this is fast progression. Is the facility willing to serve for the duration or will she need other arrangements?

As for supporting your husband, I am sure you are, in every way possible. It does suck that he has had to assume these burdens, but I am sure they are much the lighter for your being there.

Best,
Laurie
 

swalker

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I am very sorry to have to welcome you here, but welcome nonetheless.

Breathing is an issue for placing a feeding tube. Many people have it placed with PEG surgery. My doctors recommend PRG (sometimes called RIG) as requiring less sedation and therefore more suitable to someone with compromised breathing.

Getting legal documents in order soon should be a priority. It sucks to have to say that, but that is the world we live in.

Steve
 

berlies

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01/2019
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GA
I am very sorry to have to welcome you here, but welcome nonetheless.

Breathing is an issue for placing a feeding tube. Many people have it placed with PEG surgery. My doctors recommend PRG (sometimes called RIG) as requiring less sedation and therefore more suitable to someone with compromised breathing.

Getting legal documents in order soon should be a priority. It sucks to have to say that, but that is the world we live in.

Steve
Hi Steve,

I believe all legal documents are in order. We've had a few months prior to getting the official diagnosis to really come to terms that even if this wasn't ALS, whatever else this could have been was not good and knowing what the likely outcome would be. It does suck.
 

berlies

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<removed quoted text>

Hi Laurie,

I'm not really sure of a lot of the details. I received a few texts from my husband the day of their appt with short updates. He said her breathing was at 29%, so they wanted to place a feeding tube sooner rather than later, because if it dropped any further she wouldn't be eligible. I'm not sure what he meant by her breathing being at 29% - I'm sure that's not the correct medical term, but regardless - I assume that's not a good number?

I believe the facility she is at now can accomodate her - they knew when she went in that she most likely had ALS and mentioned that they've cared for others with ALS in the past as well.
 
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lgelb

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29% is probably her FVC. She needs a BiPAP ASAP or there is not much point to the feeding tube. I would suggest your husband broach this to her and her docs so they can all discuss. She really needs it on hand for the tube procedure as well.
 

KarenNWendyn

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Sorry to have to welcome you here. Progression rate is hard to predict, but as a general rule, if it starts off rapid, it usually stays that way. The older someone is at diagnosis, the more rapid their rate of progression is likely to be, but there are many exceptions. It has to do with less muscle mass and more comorbidities in older people.

How much time do you have with her? No one really knows, but it sounds like her progression is rapid. She could last longer with use of BiPAP and a feeding tube, but you may be looking at a year or less otherwise.

I believe quality time spent with her is time well spent, however long it lasts.

The main way to support your husband is to realize the emotional toll this will take on him and just let him know you’re with him all the way. It sounds like you guys are a loving family.
 

berlies

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Loved one DX
Diagnosis
01/2019
Country
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GA
The biggest issue right now is the fear of this being passed down to him. He broke down thinking he wouldn't be here for our 3yo daughter. There is no history of any MND in the family, so I know the chances are slim that she has that genetic marker, and an even smaller chance that it got passed on to him. Is there anything I can do to put his mind (and mine) at ease? How long does it normally take to get results?
 

Nikki J

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PALS
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Approximately 10 percent of ALS is FALS. Most of us know that we are. I am the 6th person in my family in my lifetime affected. So if there is no history the chances are slim. Slimmer the older your mil is. And if it were fals his chances would only be 50-50.

Genetic testing I think takes a month or so. There are a number of mutations and they account for about 70 percent of what is clearly FALS 30 percent have no currently identifiable mutation. You can discuss with your mil’s doctor Sometimes they will test for c9 orf72 the most common mutation in European origin FALS. It is very likely not going to be covered by insurance. If there is no family history of ALS or other neurodegenerative disease and especially if your mil is elderly it is likely low yield
 

berlies

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Loved one DX
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01/2019
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GA
<quoted text removed>

Hi Nikki,

His mom is in her early 60's - 62 I believe. So not young, but I don't know if I'd say elderly either. I know they took blood from both her and my husband at their initial appointment at the ALS Clinic and they were going to test her first - and depending on those results go ahead and test my husbands. Hopefully they don't find anything in her blood that would indicate it could be genetic!
 
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berlies

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Messages
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01/2019
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State
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Me again. My MIL's birthday was yesterday, so we had a lot of family in town to celebrate. She has 4 siblings, so they were all in attendance. Lots of laughter, but also lots of tears. My MIL doesn't know the time frame the doctors have given her, and that this is most likely her last birthday - though I'm sure that thought weighs heavily on her mind. The idea of FALS is still weighing heavily on my husband and he can't seem to shake it. He broke down again - more so than I have ever seen, even though based on what I've read and been told here, the chances are very very very slim. No history of it in their family, and all her siblings (3 of which are older) show no symptoms. But it's all he can think about, and of course he's just imagining the worst case scenario. It's been 2 weeks since they took the samples - and am eager for the results to come back to hopefully squash this fear in my husband, but a small part of me is also scared for bad news.
 

dldugan

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Oct 5, 2018
Messages
203
Reason
PALS
Diagnosis
09/2018
Country
US
State
illinois
It may be possible to get genetic testing via Medicare and other insurance at no cost.
 

berlies

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Joined
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Messages
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Loved one DX
Diagnosis
01/2019
Country
US
State
GA
It may be possible to get genetic testing via Medicare and other insurance at no cost.
They are doing the genetic testing, but we are just waiting on the results at this point.
 

Nikki J

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PALS
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Can you get your husband into counseling? If he is this anxious then a negative gene test is going to have him saying what if it is the 30% of unidentified FALS. This even though the odds are very much against this. I am also thinking this extreme a reaction when there is no evidence to support FALS may be because he is not coping appropriately with his mother’s diagnosis perhaps because of his past experiences. It is a terrible thing and it is very hard but he really shouldn’t be as panicked as this
 
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