how fast does pbp set in

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zac111

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with pbp does it come on in a couple of months are does it take years to show signs and can it start with just the diffucult swallowing?
 

Saubier

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I had no signs in October 06; by January it was noticeable; now it is conspicuous.

Pappy.
 

munozg

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Onset time

My Dads PBP (diagnosed 26-3-07) started with slurred speech. But only some days, then normal for weeks. This has been going on for a few years, 2+ years. Later came swallowing problems, these were about 1-2 years, a few more recent chocking episodes.
MRI/CT scan did not show anything much, but some 'pressure' in the brain area.
EMG showed atrophy, hence the diagnosis. And he has lost weight in the last 12 months. Down about 9-10kgs in two years. He was given 2 years by the first nuero, then onto an MND expert, who has given him 3-4 years.
Dad is still walking talking, getting a little aching in musles, his speech can be clear some time of the day, then slurred later, or the other way around. But it is always understandable at the moment. The speed of the onset seems to be quite individual.
Cheers, Mel
 

LeoC

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Dear all,

My Dad, has the onset for PBP since Jan 2004 (at that moment we have no ideas of MND, and PBP), we thought he had a stroke.

From what we have been through, with his swallowing difficutly, he should have "got" the feeding tube eariler, so that he kept up with body mass.

Only 3 days ago, that he have got his feed tube, but only when he reach 44KG of body weight.

Best wishes.
 

Rachel

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Hi

My mum was diagnosed with Bulbar onset in Jan 2007 having had slurred speech initially since 2005 which was thought to be a series of strokes.

At diagnosis she was on pureed diet due to swallowing difficulties and by March 2007 she had got a PEG.

Since then she has had stable periods and periods of rapid deterioration. A car accident in June whne she broke her sternum didn't help and by then she was using her lightwriter for all communication.

She has had numerous choking episodes over the past year and was admitted to hospice in October where we were told the muscles to her lungs were failing.

She has fought this all the way and the hospice are amazed she is still with us. She decided not to vent or resuscitate and is now so heavily sedated as she gets very distressed if conscious.

Obviously every case is individual but this is my mum's story.

Thanks for reading. :cry:
 

Amanda529

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My dad was diagnosed in 8/07 with the Bulbar form. We thought like many others on here that he had a stroke because of the slurred speech. But before August he was having the problem of swallowing. In October he started choking on his food. Now he has a walking cane he must use. Within the next six months he will be getting the PEG tube. God Bless you!
 

Tammy Maddox

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Newcomer to PBP

My Mother has recently been diagnosed with PBP, and the doctors imediatly put in the feeding tube. PEG I believe is the term. All of this is new to me. Besides trying to get her leagle issues in order, so that it is not a worry, and she can go ahead and live her life as well as possible, my brothers and I want to learn all we can to be prepare for what's ahead. Only one brother lives in her area, which is Alabama, I am in Florida, and the other brother is in Arizona. I'm sure most of the future responsibilities will lie on the family there, and me. She does have a sister in the area.
I have several questions that maybe some of you could help me with, and I will try to relay the info to her as she doesn't type well. Now that she has had her two favorite pass-times either taken away or made difficult. Eating (preferably out), and talking.
I know the time may be short or up to a few years, and no one can say how long, but what seems to be the avrage? She is in the stage of difficulty swallowing and speech is better in the morning and really bad by evening if she's had a busy day. She has lost about 12 lbs. but is a large women now. Not sure of her exact weight, but will be of some benifit to loose some, so long as she doesn't loose too much too fast.
Should she be allowed to have soft food, such as pudding or ice cream or soup if she has to go to a resteraunt. She wants to travel more since she recently retired, but is a little concerned about sitting at a table not eating, and how it will look.
She claims she only choked once in a while on saliva. The doctors took away all food.
Is it safe as long as she still has some swallowing abilities?
These are just a few for now. I would appreciate your comments. Mom is 69 yrs. of age.
Faffy in Florida
 

CindyM

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Hi Tammy- welcome to the forum. I am sorry to hear about your mom. This is a big adjustment on everybody!

We have a few members with pegs and i expect you will be getting some good tips soon. I have heard of a few PALS with pegs who try "recreational eating" when in a social occasion. Try doing a search on this site on peg tubes, maybe one of ourolder threads will help. Cindy
 

Tammy Maddox

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Thanks CindyM

I appreciate your response. I will look into it. She is suppose to go see the nueroligist on Monday. I've told her to right down questions, and my brother is going with her, as she tends to not pay attention if it's something she doesn't understand. I think she's also been eating a little on the side. She let it slip the other day. I believe she could still have soft foods. They just didn't give her much info on the whole thing. And if they did, she just didn't listen. I don't think they told her though. Just put in the peg and started her happy juice. She's not very happy with it though.
From what I'm reading, and from her input, it seems that as long as she's not choking, or getting strangled, she should be able to have regular food. Seems like everything went kind of fast for us. No time to really absorb what was happening.
I will check out the PEG section. I have other questions on that one anyway. So thanks again for the tip. Tammy
 

The Sass

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stay ahead of the game

As you know PBP is a quick mover once diagnosised. My mom passed away at age 77 only 19 months being diagnosed. I would say they best thing we did for her is to always stay one step ahead of anticipating her needs and with getting the right equipment just before she needed it. Laughter, Love and Family are the best medicine for PALS and CALS. God Bless you on this journey. I believe God sometimes gives these challenges for what we as CALS need to learn not the PALS.
 

MRS E TOMLINSON

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Pbs

Very new to this. My brother is very ill with PBS. He refuses pain relief and is very depressed. He has a very young family and a wobderful wife that cares for him. He has refused medical help from the onset - about 18months ago. He is suffering greatly. What can we do?
 

Jennifer51

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Mrs E Tomlinson, where are you in London

Newly diagnosed March 31st 08...first symptoms Jan 08, but I did not go to the doctor, thought my symptoms were silly and I would be wasting the doctors time......how wrong was that!
I live in Woodford Green, just inside the M25
jennifer51
 

Rock

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My Dad

My Dad was diagnosed with ALS this past week. His symptoms started in February of this year and have been rapidly progressing. Started with slurred speech, swallowing, numbness in mouth and tongue and now muscle spasms in twitching. My Mom mentioned he has a few bouts of uncontrollable laughter (something funny would pop into his head and he would not be able to let it go), but I have not noticed it when I am around him. He sleeps all the time and night time is worse for him. He complains that when he puffs his cheeks out the air comes out his mouth.

The doctor told him in the first visit that he is in the early stages, but everything I read this looks like the end. Next week he has another EMG and it will show more. His EMGs in the past showed nothing. Does anyone know if maybe he is just protecting me and not telling me what is really down the road? I am scared but I want to know the truth. My Mom mentioned he is thinking about retirement because his job required a lot of commounication and right now that is not possible because his speech is declining.
How can I help him? My Mom is being strong, but I know she is sad. I just keep giving him love and staying positive. I live in NY and he is a 4 hour drive away. Should I consider moving home to be close to my family?

Any answers or thoughts are appreciated.
 

rose

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Rock...

I'm sorry for your dad's diagnosis. People progress at very different rates from one another. The fact that your father's previous EMG's were clean is a good indication that much of what is going on with him right now is upper motor neuron, rather than lower. This is a positive thing.

By him not being able to hold air in his mouth, I'd think he has some weakness in his lips. I have lip weakness, but so far it has only impacted me by making drinking without dribbling down the front of me even more of a challenge than it was before. I also can no longer whistle, which isn't a great loss. :cool:

If he decides to leave work, he may feel better. I know that people in general, and men in specific do equate a lot of their own self image with what they do for an occupation. If he still feels like working, then he should if he wants until his speech gets to be more of a hindrance. From a personal stance, I did leave work, and I feel much healthier since, although it is still difficult for me to accept that I won't be going back. When people ask me what I do for a living, I don't know if I should say I "am" or "was" a flight attendant.

The laughing episodes you referred to is a condition called emotional lability, and it also is an upper motor neuron affect. Socially it may be awkward in some situations. There is a new drug in trial right now to help control this, and several members on the forum are participating in it. BethU and Brendapals are two. I was invited to begin it as well, but have not started yet, mainly because of the extra clinic visits needed if one participates, and I live several hours from there.

There are members on the forum that have been living with bulbar ALS for quite a while. Patricia1 was diagnosed 10 years ago.

A decision about relocating is a personal one. I do know that I wish I'd lived closer to my dad and spent more time with him before he passed away (not from anything remotely related to ALS). Four hours, although its a drive, isn't like a ten hour drive though, it can be done in a day without too much misery. So, maybe give it some time, see what they find with your dad's next appointment, and let the newness of the situation have a chance to sink in.

This particular forum, the PBP one, isn't as active as some of the others. You will benefit from reading on the other forums I think.

Good luck to you and your family. :smile:
 

grantst44

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PBP question

Hi Rose~ When you said you thought "upper motor neuron" problems might be better than lower. I'm very new at all this terminology. If you've seen my posts, my husband was diagnosed about a month ago. Also, I noticed you said something about drooling? My husband describes his face (mostly left side) as being numb, his lips do not feel anything and he says his tongue feels like it has fuzz on it when he touches with his teeth. He drools all the time. He says he feels pressure behind the nose area as if a hand has grabbed and squeezed as hard as they can. His left eye is now blood shot as if irritated but he is using eye drops. He says it feels like there is water in his left eye all the time. The doctor wasn't sure if this was from a dental problem he had about a year and a half ago. It is spreading and getting worse.
As far as his extremities (although he's lost a lot of weight), he is still working a physical job and says he feels ok.
You said a person had the bulbar onset and it's been 10 years. (He's had his symptoms for about a year and a half).
Thank you and I hope you have a comfortable and happy day today.
Karen
 
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