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lauretta

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KONG OF PRUSSIA
My husband just got diagnosed with PBP and we are trying to find out as much info as possible. Its very hard to understand how this came about and what caused it. He started slurring his words about 1yr ago but was under a lot of stress taking care of his dying mother. After she passed, we thought it would get better but it did not. We have been to 3 neurologists to finally get this news. He is having problems swallowing with extra saliva and drooling problems. He is working with a speech therapist and we are revisiting an ENT specialist. Is there anything else we can do or try? Does anyone know how long this progresses or is everyone different. By the way, he is 56 and we think that last year he might have taken a spill on the ice and hit his head-is that what could have started all this? Is stress a factory in all this?
Lots of questions, so if anyone can help, I would appreciate any comments about doctors or clinics in the PA area.
Thanks.
 

Al

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Joined
May 25, 2004
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7,960
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PALS
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10/2003
Country
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State
On
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NW of Toronto
Hi Lauretta. If you look back through the forums you will find a surprising number of people with different motor neuron diseases that have suffered different head and body trauma. Others have told of symptoms starting after bouts of extreme stress. I personally think these both might have something to do with it as well as environmental toxins. No researchers have put a definite tie in to it but they are working on it. We are all very different in our time lines for the progression of the disease but bulbar symptoms do usually happen faster. Saying that though with the information that we also have people on the forum that have had bulbar symptoms for 4 and 5 years so don't give up hope. We have a few members form PA so hopefully they will see your post and offer info on clinics there. AL.
 

lauretta

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Nov 29, 2006
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Country
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Al,
Thanks for your words of encouragement and I will go back and read thru some of the other postings, Its just very hard to read about what could happen down the road. i know for sure I'm a not dealing with this very well. I trying to keep face.

Lauretta
 

Al

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Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Without getting into specifics Lauretta, are you getting any help? This disease is sometimes as hard or harder on the caregivers. Have you registered with the ALSA or MDA? They have support groups and they are not just for patients. Everyone needs a little help and support to deal with this. Don't ignore yourself. Keep yourself well. AL.
 

lauretta

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Nov 29, 2006
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Country
US
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KONG OF PRUSSIA
Al,
How do I register on either one of these groups? I really thought this was my support ?
I am confused but willing to try and talk to anyone at this point.

Thanks
Lauretta
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Lauretta. We can be your support if you'd like but if you wanted check the ALSA website for the number of the ALSA or MDA office nearest you and call them and ask to be registered. I have no idea where your county is in PA so can't look up the number for you.
There is an ALSA Chapter in Ambler and one in Philly. Look them up at www.alsa.org and click on the in your community link and then look for PA chapters. Hope this helps. Let us know how you make out. AL.
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Lauretta -

Use both supports. We're informal, nonprofessional, personal. The other is organized, professional, has resources, etc. Don't put all your eggs in one basket.

Liz
 

lauretta

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Nov 29, 2006
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Country
US
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PA
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KONG OF PRUSSIA
Al and Liz,

Thank you. I will look into a local group as well.
The visit to the ENT doctor did not provide us with any more help. He told us he has not seen any cases of PBP for awhile. He told us to continue doing what we are doing and if we need him, call. I guess I was expecting him to suggest some drug or other to help with the swallowing. He said as long as Bill has the gag reflex (which he does), he should be okay for awhile. He wants us to see a nuitritionist which Bill wants nothing to do with right now. I also got some info on Dynovox but have not had the courage to read about it yet. I am just trying to cope with Xmas and all.

Have a great holiday!
Lauretta
 

lovelovelove

Active member
Joined
Feb 4, 2009
Messages
38
Reason
Loved one DX
Diagnosis
08/2008
Country
nl
State
zeeland
City
terneuzen
i think like wat you said: yr father get a hit on his head , maybe a cause of the symtom.but my mother who is 70years old. was diagnosed BPB in 2008. when she was only 37 years old, she had a accident , a big piece of iron hitted her head, and she falled onconscion. but after that she seems no big problem .she started the BPB symtom after she had a extreem stess, a fight with my sisters.
the doctor say the cause of this disease is not known yet.
 

sootylad

New member
Joined
Mar 30, 2009
Messages
3
Reason
CALS
Country
NZ
State
Canterbury
City
Christchurch
hi Lauretta

My husband is 51 and we have been living with this for four years now. We decided not to spend time on the "why" question, but focussed on the what now, I am thrilled that my husband has lived so long and that the children, friends and family have been playing such an important role in his care. It has been over two and half years since he has spoken. He has no mobility left, unable to roll over in bed and he is now barely able to write. We are nearing the the last stage of the journey. When we started this journey we decided it would be with a sense of humour and style, and there is laughter in the house, and those friends who have stuck by us through this have grown better for it, I know I have and I know that whilst the children will loose a father they adore, they will have had the honour of helping someone they love on this journey. Yes there are tears, and melt downs, but we stillrock on and do things that a normal family would do, have sleep overs, go out for pizza..... good luck, my advice is to not focuss ont he why but enjoy the now and involve as many family and friends as you can.
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
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Anytown
sootylad,

What an uplifting post! Thank you for sharing.
 
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