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1Debbie

New member
Joined
Sep 7, 2013
Messages
3
Reason
PALS
Diagnosis
09/2013
Country
US
State
PA
City
Altoona
My husband was diagnosed with primary progressive aphasia on 6/28 after I began noticing first a change in the tone of his voice and the slurred speech and it seemed difficulty finding the words. We saw a local neurologist and received this diagnosis then to UPMC Pittsburgh where he was diagnosed with Frontotemporal dementia and possible ALS. Began immediate speech therapy, having trouble swallowing pills and liquids and speech almost gone, can understand a few words. Having some jumping muscles and now says his lungs don't fill up completely when he breathes and his heart races. Lung capacity after PFT's 50%. UPMC now diagnosing bulbar onset ALS with all of the symptoms. We are overwhelmed, sad Rob also has Pseudobulbar effect with extreme crying and laughing episodes. Some sites say exercise some say no. I am becoming confused as to the right things to do for him. He had a bad reaction to Celexa and was put on Rilutek which we will pick up today. I started him on Vitamin E and COQ10 as well as Coconut Oil which seems to have helped the muscle twitching. Our faith is strong, please advise, Rob is 54 years old, we are devastated. So much happening sold our house to get a one story house and will be moving. Trying to take things a day at a time. Advise and prayers for this loving kind, soft spirited man.
 

sadiemae

Very helpful member
Joined
Sep 20, 2009
Messages
2,397
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
NV
City
Reno
So sorry you have to be here.It is not easy but it is doable.
 

ltbeauti

Distinguished member
Joined
Feb 22, 2011
Messages
215
Reason
PALS
Diagnosis
04/2008
Country
US
State
VA
City
Chester
So sorry for the diagnosis. I have bulbar onset with PSA. The laughing and crying were very stressful and the episodes left me feeling like I was hit by a truck. I take Nuedexta for that. It has helped me greatly by reducing episodes and making me feel more stable.
 

KLHF

New member
Joined
Aug 30, 2013
Messages
8
Diagnosis
08/2012
Country
US
State
Alabama
City
Blountsville
Just a note to tell you Rilutek is now available in Generic Riluzole. It is much less expensive.
It delays the progression some, especially for Bulbar. Be sure and take as directed.
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
Just a note to tell you Rilutek is now available in Generic Riluzole. It is much less expensive.
It delays the progression some, especially for Bulbar. Be sure and take as directed.

Sandy is just getting my first prescription of this stuff -- I am worried about side affects. any thoughts?
 

KLHF

New member
Joined
Aug 30, 2013
Messages
8
Diagnosis
08/2012
Country
US
State
Alabama
City
Blountsville
I haven't had any.
 

poppies

Distinguished member
Joined
Apr 2, 2013
Messages
233
Reason
Lost a loved one
Diagnosis
02/2013
Country
SA
State
Kwazulu Natal
City
Durban
Hi Debbie. Just a short note to say hi. My husband also has Bulbar Palsy and is also really struggling with his uncontrollable emotions. Please know that you are not alone. Try to find a support group in your area, it will help immensely.
 
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