Old 03-15-2016, 10:20 PM #1 (permalink)
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Default New kid on the block...

Howdy y'all. Bob here.

Started slurring just about a year ago. At first we thought it was a side effect to the diabetic medication I was taking. Two of them had been identified as doing such. We tried varring the dosages, stopped some, then others. The slure only got progressively worse.y

By fall, after the usual battery of test, my neurologists gave me the bad news, sent me off to Univ of Miami for a second opinion/confirmation. Bulbar Onset.

We returned from a New England Christmas with a cold. Two nights later, I was in the local hospital with breathing issues for the week. As I was scheduled for a VA evaluation later in January, they had me come to Tampa immediately. After a week's eval they scheduled me for a G-tube the following Monday, but let me out on a weekend pass. On Monday I returned with a case of pneumonia. The G-tube was cancelled for 10/14days until I recovered from the pneumonia. After which they installed the tube and life went on. I spent the entire month in a hospital.

Been on the tube for several weeks now and aside from severely mississing food... It's become away of life. Damn restaurant TV commercials don't help any either.

My primary gripe these days... is trying to get a grip on the proper dosage of (2MG tab) (Robinul). Up to eight 2MG tabs are allowable per day. Currently... I'm at three times. Sometimes it works... Sometimes not. Press on regardless. At it's worst it's like having a mouth full of slime that's difficult to swallow. Thanx for the suction unit, but no sooner is my mouth evacuated and the unit turned off... Another mouthful of heavy saliva, just that quickly. Jeez!

Anyway... That's my story and I'm stickin' to it. Y'all take care.

Bob
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Old 03-15-2016, 11:21 PM #2 (permalink)
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Default Re: New kid on the block...

Welcome Bob - sounds like you've had quite a bit keeping you busy! Theres a valuable lesson in there about vulnerabilities to respiratory infection, so thanks for sharing. I hope you'll stick around
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Old 03-15-2016, 11:41 PM #3 (permalink)
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I'm so sorry to hear this. My mom passed away of ALS and I have seen the devastation. I will pray for you.
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Old 03-16-2016, 09:50 AM #4 (permalink)
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Default Re: New kid on the block...

Welcome Bob,

There are alternatives to Robinul. If you haven't already tried some, you should ask your doctor for a different med and hopefully find one that works for you.

Ells.
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Old 03-16-2016, 10:11 AM #5 (permalink)
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Default Re: New kid on the block...

Sorry for your diagnosis and for having to spend a entire month in hospital. There are lots of lovely and knowledgeable people here!
Have you considered a flu shot? If you already haven't had one that is
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Old 03-16-2016, 10:31 AM #6 (permalink)
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Hey folks, thanx for the warm welcome... yeah, I'm hoping to be here for awhile longer.

I'll be baaaack!!
Later,
Bob
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Old 03-16-2016, 01:53 PM #7 (permalink)
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Default Re: New kid on the block...

Hi Bob sorry to welcome you but look forward to getting to know you!
Yes, respiratory infections are to be dreaded. Glad you came out the other side. Hope you find a good answer to the secretions problem.
Keep in touch
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Old 03-16-2016, 02:28 PM #8 (permalink)
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Default Re: New kid on the block...

Welcome, bob. Best of luck in your journey. Avoid sick people.
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Old 03-16-2016, 03:10 PM #9 (permalink)
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Welcome to the family Bob.
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Old 03-16-2016, 08:31 PM #10 (permalink)
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Default Re: New kid on the block...

I am sorry to welcome you here, but welcome nonetheless.

As I am sure you have already discovered, there is a wonderful set of folks here that can provide an amazing amount of support and advice.

Welcome!

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Old 03-16-2016, 08:37 PM #11 (permalink)
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Default Re: New kid on the block...

Hi Bob,

Sorry to welcome you here, but welcome. I am bulbar onset also.
You will find knowledgeable, caring and supportive folks here
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Old 03-16-2016, 09:32 PM #12 (permalink)
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Welcome, Bob. We're practically neighbors. Enjoy the 80 degree weather we're having.
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Old 03-16-2016, 10:27 PM #13 (permalink)
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Default Re: New kid on the block...

Hi Bob. Welcome to the forum. You will find many knowledgeable people frequent here. I am relatively new here myself so I know nothing about Robinul. Here's hoping you get some sold advice and alternatives.
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Old 03-16-2016, 10:34 PM #14 (permalink)
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WELCOME TO MY NIGHTMARE.....we are all the same, yet so different.
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Old 03-20-2016, 04:34 PM #15 (permalink)
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Default Re: New kid on the block...

Hi Bob,
Like the others, so sorry to welcome you here, but welcomed you are. I, too, was recently diagnosed with Bulbar Onset and am in Florida. Go figure. Anyway, you'll find great people and good answers here. Wish I could help on the Robinul. It dried everything out but the saliva, on me too well and gave me nose bleeds. Haven't tried anything new yet. Waiting on next appointment.
Sending you good wishes and hoping you have more good days than bad.

Katy
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