what should we expect?

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beccag

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May 25, 2008
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Loved one DX
Country
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WISCONSIN
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foxboro
hello out there...becca here...could any of you let me know what progression you or your loved on experienced when bulbar symptoms set in and how long did it take to decline? my mil is at that point we thik...i would truely appreciate your input so maybe we can know what to look ofr.
thank u.
becca
 

BethU

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May 11, 2008
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2,644
Reason
PALS
Diagnosis
05/2008
Country
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Los Angeles
Hi, Becca ... don't know if progression of bulbar onset is different than limb onset that reaches the bulbar area, but my speech slurring started in March 06, swallowing issues started January 07. My speech has continued to steadily decline, the swallowing has basically been a plateau ... I have periods of aspiration/choking and periods of not. But I always have to eat very carefully.

My symptoms are now spreading to my arms and hands, with difficulty esp with left hand.

I don't think I'm "typical." The rate of progression can vary enormously.

BethU
 

Seren

New member
Joined
Sep 13, 2008
Messages
3
Reason
CALS
Diagnosis
09/2007
Country
UK
State
Mid-Glamorgan
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Pontypridd
HI Becca
All new to this. My brother startedwith swollowing problems. After one year his swollow is very poor (just had a peg). And speech has deteriorated a lot. He cannot use his arms at all, but his legs are working well. I guess everyone is different. I take one day at a time. The MND nurse thought he would be in a wheelchair by now- he isn't. Hope she's wrong aabout other things.

Hope this helps. He still gets about. We are off to Lourdes next week. Also taking my mum who is in a wheelchair. :)


Take care
 

Jeannie

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Joined
Dec 19, 2007
Messages
222
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Loved one DX
Diagnosis
01/2008
Country
US
State
NJ
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Vernon
Dear Becca
Hi~ My MIL also has bulbar onset ALS. She was diagnosed 12/07, so just under a year ago. She started showing symptoms 9 months earlier and they thought she had a stroke. SInce she was diagnosed she has declined tremendously. She is unable to spead, her neck is very weak, she has swalloing issues. A few months ago she had complete hand function and now it is down to almost nothing. She is still able to walk but since her breathing is comprimised she can't get very far. SHe only has 30% lung function and she is on a bipap which she HATES and O2.
She is also suffering from horrible depression but we are hoping to get controlled with meds.
If you have any questions pm me anytime.
In firndship
Jeannie
 

Flowerpot

Active member
Joined
Aug 28, 2008
Messages
80
Reason
CALS
Country
UK
State
Tyne and Wear
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Newcastle upon Tyne
Hi Becca

My Mum has gone from vital 77 year old - walking , shopping etc to being someone who needs care in less than a year . However , you need to consider there is her age to take in to factor - the big thing is getting the right care in place for your MIL and for her carers.

There are so many people on this forum who are in a better place than me to advise

Kind regards

Flowerpot
 

Tfisher

Distinguished member
Joined
Oct 3, 2008
Messages
119
Reason
CALS
Diagnosis
6/2008
Country
US
State
Mn
City
Brooklyn Center
Don't think we will ever know what to expect

Hi Becca,
My Mom began having slurred speech in June 2007, the neurologist said that it was psuedo-bulbar palsy...nothing we can do but medicate for some of the symptoms. Second opinion in June 2008 says it is ALS bulbar onset. She has slowed down alot, began walking with a cane but can still drive (even though she doesn't care to go out much) and knits like crazy. Has had many choking issues and we are making plans for the peg procedure.

God bless,

Tfisher
 
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