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ALR269

New member
Joined
Dec 28, 2008
Messages
1
Reason
Loved one DX
Country
US
State
NY
City
Schenectady
Hi there, please forgive me for such a blunt question coming from someone who has just found this board, but it is the one troubling my family the most. My Mother In Law is 62 with advanced PBP. She has few symptoms of typical ALS progression. As of now she has a feeding tube, trach, and is currently in the hospital after several choking episodes (pre-trach). They recently released her from ICU and are hopefully getting ready to release her to home for hospice care.

The biggest question on everyone's minds in how much time she probably has left. We really aren't sure what comes next, and even the doctors won't (can't) give us any information. She is usually stable for a couple of weeks, and then has a big decline. Does anyone have any experience on what usually comes after this? Please don't worry about being truthful, even if it seems harsh. We just want to be prepared as possible and it's so hard to do that with this disease. Thanks in advance...
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Oooh! Tough question! I'm sorry for your mother-in-law's condition. If the doctors aren't willing to give it a say, I doubt anyone on this forum will hazard a guess. The information provided is insuffucient and without a medical degree in hand, an answer to your question would not do you or your mother-in-law justice.

Make her as comfortable as possible and hope for the best! Do everything for her you can, while you can. I'm pulling for you!

Zaphoon
 

jennyhoff

Member
Joined
Dec 2, 2008
Messages
18
Reason
PALS
Diagnosis
05/2006
Country
US
State
Washington
City
Spokane
The most difficult thing I have had to wrap my head around regarding ALS is it's diversity per case. The only thing consistent about ALS is that it is inconsistent. I have seen such a range in onset, in syptoms, in longevity, in pattern of progression. But I do feel good about the fact that I have a Dr that has seen many cases and can probably help me foresee what may be ahead. Also I highly encourage support of any kind. The knowledge gained from CALS and survivors of those that have traveled before me is priceless. I wish you love! Jenny
 

CindyM

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Learn about ALS
Country
US
State
New England
City
Anytown
The biggest question on everyone's minds in how much time she probably has left.

This information would be nice - so everyone would be able to plan for the future.

Most PALS say the best thing to do is enjoy every day together that you are given, and do what you can, while she is still able. There are some great threads in the archives. Some families took trips together, some PALS jumped out of airplanes, did that big fishing trip, went sailing. Hope this helps!
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
hey to everyone,
I just wanted to pop in here with something I discovered today that was very, very interesting.
As most of you know, I was diagnosed with ALS on 6/3/08. By my own choice, as well as necessity to feed my family, I kept working. Now, not full time by any means, but 4 days a week for 3 months, then 3 days a week for the last 3 months.

I applied for SSD on 12/17/08, denied for having worked too much since diagnosed. :-(So I looked into the "living benefit" option at work on my life insurance.
Yes, that is a benefit I can file for, giving me one-half of what that policy is at face value. I was thinking that would help cover basic expenses while I wait for SSD to start. Today I get the message that my dr has to send a statement that says I have a terminal diagnosed ( don't we all ) and it is going to end my life within 12 months.

Here I go: none of know when God is ready for us, my mom used to always tell me it's nothing to be afraid of, as long as you know where you're going. However, when it comes to paperwork, insurance, SSD, and all of the other crap we have to go thru to get benefits, it's amazing to me. I am almost certain my neuro can't dictate a letter with the 12 month time frame. Who would?

So for the original post-I spent a week on the beach, I rode a tandem bicycle with my son, I bought a van after my son wrecked my car, and I thoroughly love each and every day I'm given. I know that everything will work out just fine and the bills will be paid.

I'm not going to fret too much about it-don't want the wrinkles!:lol::lol::lol:
happy 2009 to all,
-brenda
 

CindyM

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Thanks for reminding us about the insurance thing, Brenda. I'd forgotten about that!
 

caroliney

Active member
Joined
Apr 27, 2007
Messages
84
Reason
Loved one DX
Country
US
State
South Carolina
City
Goose Creek
Hi ALR269,

First let me say I am very sorry of your Mother In Law's diagnosed of ALS. This is certainly a challenging disease that affects the total family. The medical staff have difficulty with answers due to the compexity of ALS. They do not know what causes it, therefore, have no idea how to answer some specific questions. Each ALS patient is like a snowflake, different in every way.

When hospice care is introduced, in our experience, this is usually when nothing more can be done for the patient of ALS, but make lyour loved one as comfortable as possible. Treasure each moment with love and treat each day as their lasts. Yes, only God knows when our time must end.

Our prayers and hugs are with you and the family. You have reached out to the best of the best on this site for support and advice. Many have much experience and can give you lots of help, so visit often.

Take care and pray for a cure for ALS.

Hugs,

Caroliney
 
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rowland's wife

Active member
Joined
Nov 22, 2008
Messages
34
Reason
Loved one DX
Diagnosis
09/2008
Country
US
State
Arkansas
City
Lamar
hey to everyone,
I just wanted to pop in here with something I discovered today that was very, very interesting.
As most of you know, I was diagnosed with ALS on 6/3/08. By my own choice, as well as necessity to feed my family, I kept working. Now, not full time by any means, but 4 days a week for 3 months, then 3 days a week for the last 3 months.

I applied for SSD on 12/17/08, denied for having worked too much since diagnosed. :-(So I looked into the "living benefit" option at work on my life insurance.
Yes, that is a benefit I can file for, giving me one-half of what that policy is at face value. I was thinking that would help cover basic expenses while I wait for SSD to start. Today I get the message that my dr has to send a statement that says I have a terminal diagnosed ( don't we all ) and it is going to end my life within 12 months.

Here I go: none of know when God is ready for us, my mom used to always tell me it's nothing to be afraid of, as long as you know where you're going. However, when it comes to paperwork, insurance, SSD, and all of the other crap we have to go thru to get benefits, it's amazing to me. I am almost certain my neuro can't dictate a letter with the 12 month time frame. Who would?

So for the original post-I spent a week on the beach, I rode a tandem bicycle with my son, I bought a van after my son wrecked my car, and I thoroughly love each and every day I'm given. I know that everything will work out just fine and the bills will be paid.

I'm not going to fret too much about it-don't want the wrinkles!:lol::lol::lol:
happy 2009 to all,
-brenda
you never know if your dr will or won't fill it out until you ask, my husband's dr did it helped us alot to get through until disability started all they can say is yes or no
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
thanks so much,
yes, my dr DID send the letter I needed-now I just wait for my office manager to get the claim filed!
-b
 

KeeKer

Senior member
Joined
Nov 17, 2008
Messages
830
Reason
Loved one DX
Diagnosis
08/2007
Country
CA
State
SK
City
Theodore
my sister in law has to apply for a marriage certificate to prove she was married to my bother. Apparently a death certificate isn't good enough to prove she is a widow. Got to love the government!
 

beccag

Member
Joined
May 25, 2008
Messages
25
Reason
Loved one DX
Country
US
State
WISCONSIN
City
foxboro
as far as i know

hello there...i am so sorry to hear about your loved one...although its true that noone can say for sure because each person is different...i thought that in order to receive hospice, the end had to be within 6 months time...so sorry to hear about all of this...it is a devastating disease...my mil has it too. ..it is awful.
hang in there...and know you are not alone...
sincerely,
becca
 

Marjorie R. Wilcox

Senior member
Joined
Nov 21, 2007
Messages
660
Diagnosis
10/2007
Country
US
State
New York
City
Richmondville
I join with others to agree that there is really no way of knowing how long a decline takes. It depends on if it is a true decline, and what is happening with all the internal organs. You are certainly taking the correct measures to help the quality of life and this PALS could rally round with another plateau. It is all difficult for everyone for sure. Hang in there.
 

leekygirl

New member
Joined
May 4, 2009
Messages
1
Reason
Loved one DX
Country
UK
State
Suffolk
City
Sudbury
hi all, i am from England and my mum has been diagnosed with MND - she has the bulbar palsy version. She has lost most of her voice and is on a liquid diet. We as a family are trying to come to terms with this as she is only 58 and we lost our dad 4 years ago from lung cancer. The support we are getting over here is good and we just wandered how other contries support victims of this horrible disease.
 

Leslie G

New member
Joined
Jul 6, 2008
Messages
5
Reason
CALS
Diagnosis
05/2008
Country
US
State
MA
City
Duxbury,
We were advised by a care manager at BC/BS that ALS patients can qualify for hospice care much earlier than "normal" patients who must adhere to the 6-month rule. Via our pcp we had a meeting with the excellent representatives this week. My husband is ambulatory though on a feeding tube.
 

kylisa

Distinguished member
Joined
Feb 11, 2008
Messages
195
Reason
Lost a loved one
Country
US
State
KY
City
Stanford
According to the Merick Medical Manual, the average for PBP is 1 to 3 years after diagnosis. With that said, like has been said before, only the Lord knows for sure. There are people who live longer than anyone could have imagined. There are also those who pass away long before they get completely down.
 
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