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dartman

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I was told by doctors and neurologists that I have bulbar palsy, restrictive bulbar palsy, als onset bulbar palsy and progressive bulbar palsy. I wish they could get together and call it one thing. Is there a difference? The neurologist that specializes in MND called it PBP so I guess I'll go with that.
I have been told to get a living directive, check your life insurance and medical insurance, have a will, call the VA and fill out the forms since I'm a veteran, get in touch with the SSA about long term disability, medicare, Medicaid, look into SLP for speech ASAP, be proactive with the doctors and anything regarding my care, blah blah blah.
I'm overwhelmed, depressed, worried about my family (especially my 13 year old daughter) and worried I will lead my family into bankruptcy if I lose my job (or the ability to do my job).
So far my speech is getting worse by the day, along with swallowing. Today my breathing got very labored without any exertion. I had an EMG in September and it was OK. Everyone seemed surprised and I was urged to do a follow up EMG in early December. So far no signs of it progressing to full blown ALS, so I am still working. They say they will work with me on the speech to keep me at work for as long as possible, but I work in sales and project management so its getting tough.
I'm sorry if I'm in the wrong place. Is it OK to post here if I have PBP? Some say its the start of ALS and some say its separate but can lead to ALS.
As I said, IT'S ALL NEW TO ME!
 

lgelb

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Dartman,

You're in the right place, and there's a PBP Support Group link at the top of your page but lots of posts on any of the threads will help you, and we welcome your questions first and your answers later. PBP pretty much covers all the labels you've heard. Honestly, even ahead of the repeat EMG, It could be time for a BiPAP now or soon to support your breathing at night, so I'd see a pulmonologist and get your lung function tested. The ALS clinic at the HSC can set that up.

All the advice you've gotten is valid, but it's less overwhelming when you go one step at a time. Once you're "in" with the VA, you'll have access to equipment and other benefits. You may want to add any disability benefit available at your job to your "look into" list. But don't be overwhelmed because of the idea of losing your job. Since your management seems receptive, you/they might want to think about ways you could work for the company using a computer, at home, since you may have mobility for years to come. And there are apps that can help you still "talk" on the phone, using the computer's voice. You can also live chat and use virtual workspaces to sell/get your projects done.

But if none of this works out, you will still have some income replacement. And I'll bet there are family and friends standing ready to help.

As far as progressing to ALS, opinions differ as to whether PBP is a precursor, variant or sometimes-precursor to ALS. It is possible that you will retain mobility for some or all time. In the end, it's a similar disease and like ALS, no one can predict what abilities you will have for how long.

So all the advice you see here about preparing for the future while living for the present applies just as well either way. Be with your family, enjoy what you have as we approach the holidays and just keep ticking items off the "prepare for the uncertain future" list. I won't tell you not to stress or worry -- we all have some reason to. Yours is just better-defined. Ultimately, this will put your other worries into perspective and you will just keep living in another key. Or, as the Eagles said, "Don't stop thinking about tomorrow," while knowing also that tomorrow is not promised to anyone.

Best,
Laurie
 

dartman

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Iglb

Thanks for the reply. I have read (spied on) forums of all kinds for a long time and that was the first thread I ever started or replied to. I have been looking at the PBP site for a while. I just thought I should start in the "Newly Diagnosed" area first.
I appreciate the kind words of advice. I know it's one step at a time.
Question: Whats the difference between a BiPAP and a CPAP? I have apnea and have a CPAP. I can ask at HSC as thats where I am leaning to go for all my care. I wanted to go to Yale but after the first visit and subsequent visit to HSC I think I'll change.
As for "Don't stop thinking about tomorrow" the plans are in the works for Disneyworld as my daughter really wants to go. My choice was England and Ireland but finances dictate Disney. Europe will be next year.

Thank You

John
 

Grateful

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Hi dartman

If your breathing has suddenly deteriorated you should see a doctor as a matter of urgency; don't view it as an MND matter but as something potentially life threatening now. Otherwise the tomorrow may not happen, which would be a pity.

After that one thing you should do now is to set up your voice bank so that the computer speaks with your voice rather than the computer voice; that's important for a lot of reasons, including your job...
 

notme

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Iglb

Thanks for the reply. I have read (spied on) forums of all kinds for a long time and that was the first thread I ever started or replied to. I have been looking at the PBP site for a while. I just thought I should start in the "Newly Diagnosed" area first.
I appreciate the kind words of advice. I know it's one step at a time.
Question: Whats the difference between a BiPAP and a CPAP? I have apnea and have a CPAP. I can ask at HSC as thats where I am leaning to go for all my care. I wanted to go to Yale but after the first visit and subsequent visit to HSC I think I'll change.
As for "Don't stop thinking about tomorrow" the plans are in the works for Disneyworld as my daughter really wants to go. My choice was England and Ireland but finances dictate Disney. Europe will be next year.

Thank You

John


The main diff. Between bipap and cpap is that Cpap is only opening your airway...think of a bipap as a non invasive vent. It helps get air in and out, though the machines look identical. Those with PSP or ALS are on bipap normally...cpap isn't enough to get air in and out, and can lead to co2 buildup, which causes tiredness, headaches, the same symptoms you had with apnea.


Def. contact the VA, there are very good benefits for you if you were active duty, 90 days, I believe, but don't quote me on that.

Be careful when seeing a pulm. Doc...as mine just ordered cpap based off a sleep study. My neuro is the one that told me I needed bipap instead.

There are various masks, that aren't all as cumbersome as the cpap masks. Whatever the name, if you're having trouble sleeping, it needs investigated and treated. There can be other causes that must be ruled out. Blood clots and pneumonia for two.

I know it's overwhelming.
 

lgelb

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John,
Like you, my husband had apnea before ALS. HSC will likely suggest you switch to a BiPAP now. The CPAP uses the same air pressure for breathing in and out. But in MND (the blanket term we can use for PBP, ALS and all their cousins), it's hard to breathe against high pressure and so a BiPAP, which can be set to have a much lower pressure during exhalation, is advised.
Since you have apnea already, your settings may differ from most cases of ALS and you may need to go through some trial and error to get the settings right. They will need changing, too, as you go. You will need a machine with an "ST" mode at minimum, preferably an AVAPS or iVAPS, to give your breathing a nudge when ALS weakens your ability to inhale. The choice of machine requires careful consideration to address your pre-NMD and post-NMD breathing problems. Let us know what model HSC suggests.

DisneyWorld sounds like fun! I am sure others know more than I but there is info on accessibility should you need a mobility device by then.
 

lgelb

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Re voice banking: I have heard the results of the ultimately synthesized voice in several cases and I am not sure it will be "worth it" for everyone, even for work. People are pretty hip to computer-generated voices, which are much better than they used to be, and a lot can be done via text. So that is why for me it is not an automatic recommendation for all, but something to consider and explore.
 

dartman

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PALS
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09/2012
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US
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CT
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West Hartford
Thanks for the advice. I see HSC Tuesday for SLP. I'll ask about a pulmonologist and BiPAP and let you know Laurie. As for voice banking, I was looking into it. Mixed results so far. The voice I have now is not my voice anymore so its probably too late to do that, especially with the amount of work, banking etc. thats involved. I've been told that the computer voices can be modified to your liking so thats what I'm going to pursue.
I'm going to be checked to see if a device that is worn on the head and amplifies my voice and supposedly makes it more clear would benefit me. If it does what they say it will be a benefit. Does anyone know of this or are familiar with this?

Thanks for the support!
 

dartman

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Sep 27, 2012
Messages
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Reason
PALS
Diagnosis
09/2012
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US
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CT
City
West Hartford
Thanks Notme. I'll keep your advice in mind. My problem with sleep is I can't seem to get there because of an overactive mind. Once asleep I wake up 3 or 4 times a night but go right back to sleep. I have noticed that I clench my teeth ALOT! Day, night, sleep or awake I always have a tense clench. I think that may be why I wake up alot.
 

ltbeauti

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PALS
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Chester
Dartman,
I have a bulbar form of ALS. It affected my speech for years before it started affecting my balance and muscle tone. Have a lot of the same PBP symptoms.
<p>Just recently I realized how often I clench my teeth especially when sleeping. I am grinding my molars down. Breathing is ok, right now. I use an iPad and Speak it app to talk. I even use it with a small Bluetooth at meetings for church or around a group of people. It is great because everyone can hear me at the same time. Whereas if I were writing it one person would read and then relay my messages to othere's. <p> I am using a walkers and scooters to get around. Don't know if I was any help, but the people on here are a great wealth of information and support.
 
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