I'd like to introduce myself, I'm Judy.

[Jlight1]

Hi I was diagnosed in July of 2010 with bulbar onset ALS. I began noticing that I was slurring some words in July of 2009 and it progressed. I went to many doctors and had many tests all of which were normal including the EMG. At this point I am unable to speak and have been for several months. I actually gave up trying when there was no one left that could understand me.

I am single and sold my home in October. I moved to be near to my sister. I purchased my own townhouse in order to maintain my independence for as long as possible. This has all been a huge shake up in my life. I moved about 300 miles to be near my sister who has agreed to be my main caregiver. I had to leave all of the friends I had and it is proving to be very difficult for me. I can't make new friends in my new location because I can't talk. Before this talking was my forte, I was a very friendly and outgoing person. That has all changed now. For the most part I try to remain optimistic but it is becoming more and more difficult for me. I don't know what to expect and find myself waiting for the next shoe to drop.

I joined this site because I feel like I'm just out here on my own and don't have anyone who really understands what I am going through. I would love to get any advise that I can. I just need some support. I feel as if I am wasting the time that I have left by being depressed.

Sorry to go on, but if anyone has any advise for me I would really appreciate it. Thanks for reading.

 

[ccurths]

I too have had my speech affected by ALS. It was my first symptom and yes it's hard. I have a iPhone and iPad with the speak it app. It's a great help but for sure docent replace the ability to speak. You are not alone in this I thought I was alone too, but have found people who have the same problem. It's a big adjustment, but what's the alternative?

 

[BarryG]

Hi Judy, welcome to the forum and sorry about your diagnosis. Do you have a speech device? I haven't "talked" in well over a year but with my iPod touch and netbook I talk to lots of people and have made many new friends. You don't have to spend lots of money to have a voice if you can type, each of my devices with speech software cost less than $500.

 

[peter57]

Hi Judy,
Welcome to the forum. All of us here that have been ALS diagnosis with ALS suffer from one thing or the other.
Some cannot walk or move much, others cannot talk, while others cannot eat via the mouth etc.

So this forum is a way of us communicating with like people regardles of our condition or location, I live in Australia.

So consider us all of your friends, all battling this disease together.

P.S. my voice is going too and use an Ipad for long conversations

P.P.S. I will now go and "friend" you so you have a friend "Down Under"

cheers
Peter

 

[Jlight1]

Thank You for such quick and nice replys. I do have an Ipad and its a miracle. I really shouldn't complain I am lucky to be able to have this new technology. I guess I will need to try to stop being so shy about my situation. Happy to have a friend "Down Under" Peter.

 

[KC2U2]

Hi Judy,

I was diagnosed in September, right arm very weak and I can walk some with help of AFOs and a cane for now. I am already looking into voice banking as I know it will go sometime in the future. You will find lots of support, advice, prayers and help here. Unfortunately, you are welcome here, wish it wasn't so.

 

[pumpdoc]

Welcome Judy, like others have said we are all in the same boat so to say, much love here.

 

[abbas child]

Hello Judy, and welcome to becoming a part of a really special group... there is such support and helpfulness within this forum, it's a shame we have to have a disease to bring us together. I have such sympathy for an extrovert and one who loves to talk being hit with bulbar ALS. Mine began at my feet and is messing now with my neck muscles... and speech. I have just an inkling of what you must feel, although I'm not yet feeling isolated. You bulbarians are very special here since we get to be the recipient of your thoughts!

Hugs,
Ann

 

[smwelder]

welcome to the family

 

[Lavender Lady]

Hi Judy, Welcome I am glad you are here with us. I am sorry you cannot speak audibly on your own. I have limb onset but I am starting to lose my voice too. There is so much love, support and understanding on this forum. I know there are people on here to relate and empathize with us. Please keep writing on here you have just found a world wide network of friends and we are here for you each day.

Bless you,

 

[Pat Paine]

Welcome Judy,
You will find answers, support and loving advice here.
blessings, Pat

 

[Jlight1]

It's me again! So nice to be so easily accepted. It feels like a new kind of strength already. KC don't just think about that voice banking, Do it now! I wish I had known that it could be done. I am the only one who will ever hear my voice again and it's only in my head. Time seems to fly with all of this and your voice will become unrecognizable. I lost the ability to be understood way sooner than I had expected. I did not even know that I had ALS yet. I have an IPad with "speak it" but there is no inflection in the voice and she can't even pronounce words with long vowels and short vowels correctly. Don't get me wrong it is a miracle but your own voice and phrases and inflections would be so much better. I feel as if I no longer have a personality.

I have so much trouble with excessive amounts of saliva. I am taking the compound but am wondering if there are any other ideas. My lips not longer function well enough to keep liquids in my mouth so if I even look down saliva runs from my mouth. I go through copious amounts of paper towels in a day. My lips and fingertips are always chapped. Any ideas?

 

[BarryG]

Judy, you can try various things for the saliva. I tried Amytriptiline but it screwed with my blood pressure so am now on Glycopyrrolate and it works well for me.
As far as the speech programs go, I have SpeakIt and it is ok but does not have any pronunciation programming or preprogrammed phrase capability. It is for those two reasons that I use Proloquo2Go on my iPod touch. Much more expensive but better voices and it's nice to be able to say words right.

 

[Marjorie R. Wilcox]

Hi Judy.. We are so happy to meet you, but not in the realm of circumstances, of course.
I must say you are mistaken. You are still very friendly and outgoing, just with different people. US!
You will find family here and love and caring. We can talk about anything we want here and we'll try to help in any way we can.
You are very courageous. Attitude helps you and all those who care for you.
Just remember, you are still the wonderful person you always were. It is your body that is different.
This is the time to make the most of everything and make things count! You are blessed already with a sister and a plan.

 

[joni51]

Hey Judy sorry you are here, but welcome. My husband's speech has went bad so fast that we are going to have to get something soon. You are not alone! Great family on here that really have good info and care!