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emma1230

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Joined
Aug 27, 2008
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13
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Loved one DX
Diagnosis
11/2007
Country
US
State
wa
City
everett
I live in WA state, and in our area there are 4 women, my moms age (60ish) that have been diagnosed in the last 2 years. My mom has ALS, bulbar onset..
One of the ladies has PLS.. but she seems to be worse off than any of them.. but what I just read on the computer says that it takes longer to hit you.. I am just confused.. This poor lady was put in a nursing home.. She has a husband, and 4 kids.. AND NOBODY CAN KEEP HER AT HOME! My mom just had me, and I live with her and take care of her.. I just DO NOT understand people.. I think it is so sad!
Any way.. I really do have a point.. do any of you think that she could be just giving up.. since she is in a home? (is our mind that powerful)? She has no one there, no one can understand her.. I know if my mom didn't have me to understand her, she would not be doing as well as she is.. Communication is so important for people..
I am just confused.. any input would be great! thank you.. emily
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
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Emily, how very sad for that poor woman. I'm sure that being in a care facility ... especially when you have children who could care for you ... AND being unable to communicate, must have her feeling very isolated and vulnerable. I'm sure that this can affect your will to live.
 

tmasters

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Feb 19, 2008
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531
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PALS
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08/2008
Country
US
State
California
City
Anaheim
Emma,

So sorry to hear about your mother's progression.

Every case is different. I've also read that, in general, people with PLS will live longer than people with ALS. But if you look at any particular case, you have to throw the generalities out the window.

It doesn't necessarily mean she's giving up. Give her your love and support and let her know when you see she's doing her best.

-Tom
 

kevinw

Distinguished member
Joined
Apr 15, 2008
Messages
203
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DX UMND/PLS
Diagnosis
01/2008
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US
State
PA
City
Poconos
Emma, so sorry to hear of your mothers condition, but it sure sounds like she has a great daughter to care for her. I have been wondering the same question you have regarding progression and diagnosis. It just seems that the two "motor neuron diseases" to so close that I wonder what the turn-over rate is from PLS to ALS is. I have once read that there is about 2,000 people diagnosed with PLS, verses 30,000 people with ALS. I would love to know the number of people that were diagnosed with PLS and during the first five years were then re-diagnosed with ALS? It just seems that the 2,000 number is only a stepping stone to inserted into the 30,000 number at a later date. Is this why in Europe it is only one group called "MND"?

Sorry for my venting, it's just so hard to get true/accurate numbers and answers.

But Emma, I would agree that you being there for your mother is doing her such a world of good, as opposed to someone that does not have constant contact with a loved one.

Keep up your good work, I'm sure it takes it's toll on you also, but it sounds like your doing a "great thing".
 

emma1230

Member
Joined
Aug 27, 2008
Messages
13
Reason
Loved one DX
Diagnosis
11/2007
Country
US
State
wa
City
everett
I guess I didnt explain well.. My mom has ALS.. and lives at home with me and is doing pretty good.. The lady I was talking about has PLS, and lives in a home.. I am just confused about pls because everything I have read says it is slower than als, however this lady I know is going faster than my mom, who has als..
that is all.. sorry for the confusion.. I just find it really sad that people don't take care of their loved ones.. If it weren't for my mom, I would not be here, and neither would anyone.. I just don't see how people can put them away in a home.. IT is sad to me..
I feel like this lady is progressing so fast because she is in a home and no longer has anything to live for.. she even has a husband that hardly comes to see her.. I just think some people are wrong..
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Well Emily, as they say, you can pick your friends but not your relatives. It's sad when things like this happen but some people just aren't equipped mentally to take on the task of Caregiver. Lucky for your mom that you are. The others could just be selfish too but I don't know them so shouldn't judge.

AL.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
hi emma

sorry to hear about your mums diagnosed,i hope her progression is slow.
from my studies about half of those with a diagnosed of pls go onto a diagnosed of als,there is also umn dominant als(thrown in between to muddy the waters)
the figures given for pls would be after the 5yr mark,but there have been cases when a diagnosed of als can be after 5yrs.
in studies on autopsy there is always lmn involvement in pls patients.
survival rate i think can be helped in either by a positive attitude,good care and support.
again in both progression is the most important thing.
in als they say 3-5yrs but many live longer ------------in pls its anything upto 20/25yrs depending on progression and in young/older onset from the mean age of 50yrs.
i have had mnd 9yrs with gradual slow progression starting in my legs and 2yrs ago in bulbar areas.
my progression would be slow for als but given the fact that my muscles are getting thinner and weaker and some lmn in the left leg it could be umn dominant als or quicker progressing pls(with disuse atrophy).
i can not comment on the lady you talked about,it depends on her age ,progression and when she got her diagnosed in relation to a possible future diagnosed of als.
i wish you and your mum all the best:smile:
 
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