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rajagopal_04

New member
Joined
May 23, 2010
Messages
4
Reason
CALS
Diagnosis
03/2010
Country
US
State
WA
City
Belllevue
I am new to this thread. Last month my dad diagnosed as he is suffering from PBP. This all started with slight trouble in speech. Now his speech is not clear (most times), sometimes problem with controlling saliva, little difficulty in chewing, facial muscle weakness. Apart from these he is very fine. He is doing physical therapy, speech therapy, Yoga. (it looks like he built some facial muscle recently). Is this possible or my imagination?

Is there any medicine to slow or stop PBP from progressing? Any other relevant info is really helpful. Are there any hospitals in USA to who are profession in treating PBP?

Thanks for your help. I really need it.

Raj
 
Raj, there is no way to stop progression. Is your Dad being followed by Medical people that specialize in ALS? I believe that all of the research shows that speech therapy is counter productive. Some of the PALS actually had stimulation done and it increased the progression.
The yoga sounds perfect as it is about gentle stretching. Your Dad will need a feeding tube and BiPap sooner rather than later. Encourage him to be on a high fat calorie diet. My husband uses Robinul at night to help with the secretions. Welcome to the forum!
 
Thanks for your advice, I really need it now.

No, My dad is not followed by ALS specialized Medical people. He is living in India now, and I got know about this yesterday (just before posting in this forum).
 
Raj, just wondering how you and your Father are doing today?
 
We are opting for Ayurveda therapy now; i heard they have success in arresting the PBP progress. I will post in this forum on it progress, If that helps. I am also expiring options in Homeopathy, where I also heard success in stopping the progress.
 
My mother was diagnosed back Feb 2010. It seems she gets worse weekly. She is taking Rilutek, but I don't know if it helps or not. When she was diagnosed she could eat some still, now she can hardly eat anything except something like scrambled eggs. You cannot hardly understand her at all anymore. I have heard that sometimes patients with PBP can get at a stand still. I keep hoping and praying that this will happen. God Bless!
 
I was diagnosed with PBP 1 yr ago. I started with a slur in my speech. I have had 3 top notch doctors all came back with PBP onset to ALS. The key word is progressive. Don't count on it stopping. I had a PEG which is a tube in my stomach for about 3 weeks now. It became hard for me to swallow liquids especially water. Now I can just pour a cup in the tube and it has made life much easier for me. I would choke easily while eating. Now I get what I need from Carnation Instant breakfast thru my PEG and can eat for pleasure. I can still eat ice cream and love evey bite. Any time I eat chunky foods I can easily choke so I mash or puree them. I take my pills thru the tube with water. I put off that tube for as long as I could and now I don't know why. It has helped give me peace of mind. I feel fortunate that I live in the time of Modern Medicine. They don't have a cure yet but at least I can be fed without swallowing and I can talk with the help of a machine. I am still alive. I can still see the sun come up and hear the birds sing. So life is good, better since I don't have to worry about choking over the water I know I need to drink.
 
Thanks for your support on this. His disease is progressing, now he is felling stiff muscles, and more slurred speech, difficulty in eating food. Earlier he was able to eat hard food, now he can’t eat at all. Hope, he will at least have a still time, where it won’t progress for a while.
 
I know what you mean. I see that your diagnosed was in March. My mother's was in Feb. This past weekend was so hard. She can hardly take anything in by mouth, so we didn't want to plan any major get togethers. We did have some ice cream, she could only take a few bites. She had written to me yesterday that she wishes she could eat something good. It just breaks my heart.
 
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