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t34gib

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Jan 2, 2009
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234
Diagnosis
12/2008
Country
US
State
FL
City
Fort Pierce
Hi everyone. I am back from the Mayo Clinic in Jacksonville with a Dx of Bulbar Palsy and technically or clinically ALS. The Dr. said it seems to be in the Bulbar region only and all other test came out good. I think I am in the gray area. He feels it is slow progression and we will look at the next 6 months to see what happens. He also said that someone who has slow progression does not usually change progression rate. I am going back on Monday to get enrolled in the research trial for the Avanir drug. It is still pretty confusing to me. But I am going to take this one day at a time and do the best I can to just go on living.
I do not have any other symptoms except bulbar and then it is only slurred speech or speech problems with some swallowing issues, very mild. The tongue has changed. I am not sure what to expect in the future or how fast things will change. The Dr. told me some people stay this way for years and some never really get any of the limb involvement. I really don't know how to interpret the info except to accept what he is saying. I saw the speech pathologist and the pulmonologist. I have very good scores in pulmonology. My speech is the biggest problem. I was told not to overdo it as it will cause me to lose the ability quicker. So I am doing a lot of email and instant texting to family and friends.
Any advise is greatly appreciated.
NancyS
 
Hey Nancy,
So sorry for your diagnosis, but it sounds like you have a great attitude! Give yourself a couple of weeks to settle in to your new normal, and you'll find you have more "oomp" than you ever dreamed.

Some things to ponder-have you registered with your local ALS Assn (or the one with your clinic I think) and your local MDA people too. They both can be a big help with questions about "stuff".

I also am bulbar onset- diagnosed on 6/3/08-speech is my only problem, I don't really look at it as a problem though. I talk very, very slow and slurred, but it's funny, our teenagers can understand every single word I say. So can most of the people I work with. Your dr is right though-the more tired you make yourself, the worse the speech is. At least I think that's pretty much with a lot of folks.

We're all a bunch of snowflakes, no 2 of us are alike. So do what makes you happy-enjoy life, family, hobbies,etc
If I can help you in any way, I will certainly give it my best shot!
take care,
brenda
 
Brenda, Thanks so much for the reply. We go on and do what we have to do until we can't do it anymore. Sounds like normal life. I am a believer in it is what it is. Our only choice is to accept it and deal with the now. That is what I will do until the now ceases to exist. All any of us really has is this moment, and this moment is pretty good for me. I am glad to have found this forum and look forward to getting to know everyone. Again, Thanks
NancyS
 
Hi, Nancy ... welcome to the forum. You will find all kinds of support here, plus lots of helpful information.

I was told by one speech pathologist to just slow down my speech, and emphasize the consonants at the end of each syllable ... these will help people understand you without wearing you out on endless word drills. It's great that you have good scoes in pulmonology. That is very encouraging. And you're very wise to accept your neuro's advice! Listen to the experts, take it easy, and get good nutrition, and you will discover that it's possible to live a very rewarding life with Bulbar Palsy and/or ALS.

Take care.
 
Hi Nancy;

From one newcomer to another, welcome. I was diagnosed with Bulbar ALS in Jan 08 and have trouble speaking and swallowing but so far the people who are important to me can still understand me. As my wife says "Just because you can't talk doesn't mean you get to not communicate". Many people have told me that my speech is better in the morning than at the end of the day (and here I always thought of myself as a night owl) so the advice of lots of rest and not straining to talk is good. One thing I know for sure is that I am very glad that if this has to happen to me it is happening at a time when there are things like email, text messaging, electronic speech devices, and this forum that make it possible for me to "talk" to friends and family easily. All the best to you and let us know how the Avanir trial goes.

Barry
 
Hi Nancy,

Glad you found the forum. It is such a warm, inspirational place and everyone has such good advice and comments!
I have had slurred speech since Nov 2008 and mild trouble swallowing. My family can usually understand me, but there are times when I cannot even understand myself :-D The speech doctor at Mayo gave me a very helpful tip. I speak slowly and any word with more than one syllable, I say fast with no pause between the syllables. My family was surprised with how this makes me much more understandable. It takes practice and is tiring if done for too long. But it really works!

Vicki
 
Hi Nancy- I see you found some great friends already. Brenda is right- give yourself time to settle in. You will find a lot of great role models around here! Cindy
 
Who said Cindy quit? Not a chance. LOL.

al.
 
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