just can't be understood

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handinhand

Senior member
Joined
Mar 28, 2009
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908
Diagnosis
02/2009
Country
US
State
Colorado
City
Pagosa Springs
I am making sounds that don't come out like what i am trying to say..sigh... Going to Clinic on thursday this week.I have progressed enough this last three months where i think Dr. will see a big difference. Can I say that I am scared. Sad tonight and thinking that I will need to take my voice machine for the first time around my kids and Gr. kids and the Dr.
Rich will be there with me.. Thank God for him....I have lost 15 ib sence last visit. The last two weeks can't eat hardly anything.Smoothies are good still. I still don't want the peg yet,hoping I can put that off another 3 months.. So I am wondering do you write down all the things that are progressing and hand them to the Dr. ? I guess that is the way it's done now? I will be back on Monday evening... I'll let you know the out come.. HUgs, L:cry:
 
Dear Linda, please get a peg tube now before you lose any more weight! It is way harder to regain than it is to lose and you need to start trying now, not in 3 months. Please, please do it as soon as you can, I can't emphasize it enough that it will make a huge difference in your energy level and in your life. It is not that hard to get one and feeding by tube is so easy, no choking and no struggle. I even sat in a busy departure lounge in the Phoenix airport and had a feed and no one batted an eye. I am no longer able to even swallow my smoothies so I am totally peg now and while I miss food it is ok and I am not hungry and not losing weight.

As far as communication goes, I know how hard it is. No one can understand anything from my mouth now so I have given up trying. Practice with your IPod, get a small notebook and carry it and a pencil, get a small whiteboard, and even a netbook computer and free speech software. If I can help you in any of these things just let me know and I will do anything I can to help you decide what will work best for you.

Your doctors will ask you questions at the clinic and if you can answer with yes or no then that will be easier for you. My wife does a lot of talking for me but even so I answer a lot of the questions with my netbook. Anything more in depth and you will need to write notes or use your IPod.

Good luck and remember PEG ASAP and use your technology cause it is the only voice you have now. I know it sucks but what can you do?

A big hug from your speechless rocky mountain buddy,
Barry
 
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I can not begin to imagine what you must be going through at this moment. I only hope it brings comforts to you in some way to know that people you know or may never meet pray for your well being. May GOD Bless.
 
Linda, my dear friend, I think I am following in your train so thank you for raising this and thank you Barry for your loving reply. So so sorry tha this has had to happen. Feel so close to you all though so far away
 
Hey Linda,

I echo Barry's recommendation about getting the PEG. If you have been losing weight , that is the warning sign that it is time to get one. Please consider it , as we enjoy your company.

As for the speech, I am just behind you in the squeak and grunt line. Even Wanda is having problems understanding me.

Glen
 
My sweet Chickadee, SCHEDULE the PEG asap! We need and want you here for a L_O_N_G time! It will truly make your life and Rich's soooo much easier. Web's speech is going so quickly...I have to ask him to repeat repeat repeat and he refuses to write and has not even considered trying to learn how to do artifical speech...I miss his sweet Charleston drawl and the long conversations that we use to have..hugs to you Kay Marie
 
Good morning friends, Thanks so much for your up lifting voices[no pun intended] Rich is loading up the car and I just need to get myself ready. I wanted to tell all of you how much I appreciate you. You are my lifeline..... today will be great traveling the mountains of Colorado. We go up over Wolf Creek to get to Denver. Beautiful Ride. I get to see 4 of my kids and 6 Gr.kids. It will be a great week end.... Irismarie,i just fed the Chickadees, 5 of them now. They are all eating from my hand. Just love that and it starts my day out good. Well guys I'm going to have my Tea and crumpets and be on my way . Hope you all have a wonderful week end. Hugs, linda
 
Have a wonderFULL time and enjoy every second! xoxox
 
if you check in over the weekend, know i am praying for a decent clinic visit with hopeful helps...and for some really awesome family time. lots of love to you
 
Wanted to chime in and tell you good luck on your visit. Sorry about your speech. My husband has the same problem. There are good days and then bad regarding speech. Please get the PEG before you really NEED it! Sending you HUGS!
 
Oh Linda, so sorry to hear about your voice going. I have been busy and was not able to look at the friends threads. So sorry for my late response to you. My dad isnt at the peg stage yet, but listening to our friends I would take their advice, that way you can get the extra nutrition that you need and hang around for a lot longer! I hope you have a good weekend luv, and I hope your doctor visit turns out well. Please let us know how it goes! Oh yea, and if you want to still talk about the cruise, you can just PM me your email address, or have your hubby call me. You need to live it up girl! Lets see if we can make that happen! I will move mountains for you!
Big Bear Hugs, Kari
 
Linda GET THE PEG NOW It doesnt need to be used right away, but the fact that it is there will make Rich feel so much better. My husband hates his, even though we dont use it yet, but knowing that he already has it, and we do not have to do the surgery later, when there might be complications, helps me rest better. HUGS Lori
 
Linda, I am so sorry I came to find this thread too late. I would have liked to have wished you well before your visit with the neurologist. Predictably I am going to repeat what everyone else has said and recommend you get that PEG sooner rather than later. When I was researching the PEG for my dad, it was Beth who said that a big factor in slowing progression is keeping your weight up. Her neuro at the clinic she attends said it has proved to be even more successful than Rilutek at slowing progression down. That was all my dad and I needed to hear. I don't want you to lose any more weight! I know it's not easy to accept even needing a PEG but it's discreet and such a minor procedure. I hope that you get it very soon. You are very important to us!
 
Linda, you'll be home by the time you read this....I'm praying you have a great trip. I agree w/ everyone else, get the PEG now..

You'll have to tell us all about those grandbabies!

Don't think abot the loss of your voice just think of all the new gadgets you get to play with. And all the fun the kids will have helping you learn!
 
I'm gonna say it too...Please get your PEG! It is not a big deal at all. I darn near starved myself before I got mine. I had never been in the hospital for anything in my life. It just feels like you did a few too many crunches, and pulled a muscle in your tummy...thats it! Spending a day laying around in a hospital room is the worst part, so that doesnt sound bad does it? You will feel "SO" much better when you start getting nourished again, and if your like me, you won't have to buy groceries anymore. Saves me some trouble, and money.
 
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