bad feeling about progression

[Madison1943]

Hi all, for a long time it was just my legs that were deteriorating. But last fall I starting slurring words. Now, of course, that's worse and declining so that probably in 6 months I won't be able to talk. And I'm coughing after I eat or at random. And my arms are starting to twitch in a devious way. I figure everything is going to go south at the same time. Breathing, eating, talking all together. I'm not going to get a peg so what use will bipap be if I can't eat. I'm not going to live all tubed up. I have utter respect for people who do, but I don't want to live with this stinking mess. I'm willing to try a bipap, but not if I can't eat. Anybody else in this pickle?
Thanks,
Carol

 

[irismarie]

I think I am at exactly the same state as you. You describe my condition right now. MAkes you wonder, doesnt it! Keep changing my mind about tubes. Let us see how darling Linda does...

 

[Phil M]

Hi all, for a long time it was just my legs that were deteriorating. But last fall I starting slurring words. Now, of course, that's worse and declining so that probably in 6 months I won't be able to talk. And I'm coughing after I eat or at random. And my arms are starting to twitch in a devious way. I figure everything is going to go south at the same time. Breathing, eating, talking all together. I'm not going to get a peg so what use will bipap be if I can't eat. I'm not going to live all tubed up. I have utter respect for people who do, but I don't want to live with this stinking mess. I'm willing to try a bipap, but not if I can't eat. Anybody else in this pickle?
Thanks,
Carol

What does eating have to do with the bipap? Even if your breathing is still good, theres still 2 good reasons for the bipap.
1. A lot of pals have sleep apnea. Your throat relaxes from weak muscles. It closes up some when you lay down, and obstructs your breathing.
2. Lack of oxygen kills nerves, and can speed up your progression.

My arms have been twitching for 2 1/2 years, and they still work, just a little weak. Twitching doesn't always mean your progressing faster. Some people hardly twitch at all, but they still waste. Some of the people that have had als for a long time have had twitching the whole time.

 

[BarryG]

Carol, not eating is not so bad, sure it is a bit boring but it is ok. Life is all about attitude, having a peg tube but no bipap yet makes me partially "tubed-up" but I don't care what it takes, I want to be here. I went to a very fancy restaurant the other night with my wife, niece, and sisters (visiting from out of town) and yes I was a bit sad that I couldn't partake in the fabulous food but was enjoying their company too much to be depressed at all.

I agree with Phil, having a bipap has nothing to do with having a peg tube. These things are just tools, they don't define me, only I can define me. Like all tools, we can use them or not but please don't discount how much they can help you feel better.

 

[icecreamlady]

Carol-

The bipap will let your muscles rest at night. You may feel like crap during the day because you use so much energy at night trying to breath, that by morning you are fatigued. Getting the right mask to fit can be a pain, and getting used to it can be a ***** as well. I use a full face mask at night, a lot of mornings I wake up and find that I have taken the mask off during the night. There are nights when I need it more than others, depending on how I feel. You feel like an astronaunt or a scuba diver with it on.. LOL This who thing sucks !

As far as feeding tubes and trachs, thats a personal discison... get the bipap and at least feel better during the day..

Lora

 

[tdamess]

i have a bipap and i dont have als but , will not sleep with out it ...if anything just use it at night please then think about ...like food you can not say anything till you try it ... i am only talking about the bipap the rest is how you feel about things but give the bipap a chance to help you sleep better a bipap will not keep you alive anyways that is where the trec and all that other stuff comes in

 

[cukita99]

carol,
i have been without speech, legs and arm use for almost four years. i dont want a peg, or vent because for one i cant afford it and two i dont want to live like that. i still eat but chewing food is difficult. i enjoy food and i can still read, so im happy for now.

 

[hot...dog]

Carol,

I have bulbar and my 1st symtom was my voice (jan/09) Then legs, right hand/arm all very quickly. Then it slowed down. My speech is garbled but 80% legible. I cough and wheeze when I drink wrong. I found a site through this forum that uses electricity to excercise the esophagus, metacare pays for it and its called vitastim.
I have a wife and 2 kids so I will be getting a tube.

Best of luck

 

[serenade]

Carol,
I am all about quality of life and will not go to extreme means when the time comes. A feeding tube will not interfer with that, I have one now because my quality of life is still good and I want to keep it that way. No I do not speak much now. I had vitastim therapy which improved my ability to swallow so I still eat some foods. I have left footdrop a year now but I will not give into it, I make myself live everyday and will not give in to ALS until I have too! I had the same symptoms as you have from the time I began slurring 9/08 till now I spoke and I still eat, try to not focus on giving up you will be better served in trying. If you twitch then get some meds from your neuro they should be able to lessen your symptoms. Try to hang in there. Life can be good.
Hugs
Judy

 

[irismarie]

than k you judy and all you others for those positive inputs.

 

[JeffP]

this is a very difficult decision to make iwasdiagnosed aug.09 with bulbar als my speech sounds like im drunk but in 2007 it relly started i had half my upper teeth pulled they were bad and i thought my speech was due to that. but my nurologist said no it was the onset .i have a wife 5 children and 7 grandkids i dont want to be hooked up with all these gadjets but like barry says he enjoys life and i do to so if it comes down to it i will partake in a pegtube i heard its not so bad never give up my friend i believe a cure is just around the corner

 

[t34gib]

The feeding tube is not bad at all. What is bad is not being able to eat, but considering the alternative, the tube is not bad. Easy to do and keeps you going. But I realize it is a very personal decision as to what any of us are able or willing to do. Every life is different and every person is different. But if you are holding back out of fear, then go ahead. It is not bad at all.

 

[DebbieR]

I know that once my dad got the bipap - he slept better at night so he felt better in the morning. It seemed to give him a new lease on life. He didn't necessarily enjoy having to use it but it was a wonderful tool to help him live his life to the fullest and he really appreciated getting a full nights sleep.

 

[Marjorie R. Wilcox]

It's tough to think of these "machines" to live by, but realize, Dear, you can't just end it without comfort along the way. You may last a very long time and you can still enjoy almost all aspects of life. A bipap is a minor aggrivation if that. It is a tool to give you recooperative sleep. My hubby has had his bipap for years. He still comes and goes during the day, is the Elks treasurer and still does corporate income tax returns this time of year. He drives, is happily married (me) and helps around the house. He runs Bingo twice a week. Yes, he staggers, and he coughs when he laughs or eats, but he is still eating with caution, and loves his life. He comes home in the afternoon and takes a nap w the bipap too.... We KNOW that when the time comes he will get a PEG. No one even knows you have it if you don't tell. You need to rise above this by saying, "Yes, I have it, but it's not my life... it's a sideline. The vent is another story, but we will see when the times comes. The bipap is in our home, just like the vacuum cleaner is... and like the vc, we wouldn't want to live without one. I snuggle up to it and thank God he has it.

 

[hopeful warrior]

Madison 1943~ My hubs has ALS. We've been dealing with the diagnosed for just over four years. He has a PEG tube and a bipap machine. He wasn't going to be hooked up to any tubes but here is the argument his MDA doc gave. Starving yourself (without PEG) is miserable and painful. He says that is a terrible way to die. The bipap helps you breathe. It doesn't breathe for you. So, you can still injest calories and vitamins and have an enjoyable life while you are using a bipap at night and when you need it. He says if you pass in this manner, you simply go to sleep and wake up in heaven. NOW, I'm only repeating what the doc told my hubby. So far he has been right. Hubs is still thinking about an invasive ventilator. That is his decision to make. He is very happy with the PEG tube and assistive bipap.