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phil-jr

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Sep 18, 2007
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I am using this site for the first time and i'm not too clever with computers so I hope I manage this ok. My father is 82 years old and has been diagnosed with progresive bulbar palsy. His speech is almost gone and he chokes on his food and drink. I have heard there is no cure but I am not sure if people sometimes revover from bulbar palsy. I don't really know what to expect and would appriciate the truth.
 

CindyM

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Hello Phil and welcome to the forum. I am sorry to hear about your Dad. It is tough to give the bad news but motor neuron disorders have no specific treatment or cure. THat is why people find this site to be helpful in providing support and encouragment for what is basically untreatable. I am sorry. Cindy
 

Icanmanz

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Phil, sorry to hear about your dad's diagnosed. Cindy's post said it all, unfortunately. All I can say is God bless. If you remain on this forum you will encounter all kinds of support from these wonderful members. Like Cindy said, there is no cure for als or any other kind of MND's of that sort.

Irma
 

allysonsmith

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Phil,
I too am using this site for the first time. My father is 58 and has been diagnosed with bulbar ALS. It was a long process (almost two years) to reach this diagnosis. My father has not been able to speak for over a year, and relies on a computer with text to speech software. He too chokes on food and drink. What I understand about this disease is that it will no go away, but sometimes the progression will slow.
:confused: Recently, my father was told he needs a feeding tube, and he has chosen not to go through the procedure.
 

phil-jr

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Harrow
Thankyou

Hello Cindy and Icanmanz

Thanyou for your honesty and warmth. Some people say that at 82 my dad is pretty old. My Dad was 80 going on 30 only two years ago. He was a professional saxaphone player and at 80 he was still playing, even going out to other countries. Just before his symtoms began he made his first album (CD) a collection of Jazz classics. At least we will always have that as a fitting memory of his work. I hope and pray his age is not against him living for some time yet. He is a wonderful man and father to six children & has many grandchildren and great grandchildren. It helps to write this down and share my thoughts with people that understand what this is and how people are feeling. I know a lot of other people on this site share my feeling for their loved one's and my heart goes out to you all. I will hold you in my prayers. God Bless.
 

wewillbeatthis

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Messages
185
Phil,

I am so sorry that you and your family are going through this. As the others have said although there is no cure there are several medications and treatments that can be done with a doctor and streaching and other exercises on your own that can make your dad more comfortable and help him to remain in the stage he is in at this time for as long as possilbe. It's great that you found this site. Ask your questions, come and vent or just to say hello and let us know how your dad is doing. We are all hear for you and want to help in whatever way we can.

God Bless and remain positive...

Jennifer
 

phil-jr

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Hi Allyson, at least I can say with honest that I know how you are feeling. I'm sorry to hear that you are going through this too. If you are feeling like me you must feel helpless at times with anxiety that is almost ovewhelming, but we have to stay strong, for our Dad's are still with us today and hopefully for some time to come. I understand your Dad not wanting a feeding tube, my Dad is not quite at that stage yet. I have read on this site, some people that were not keen on the idea at first, later went with the tube and found relief that they were no longer choking. It is of course your Dad's life and choice, I'm sure you will support him what ever may be. Best and warmest wishes to you.
 

allysonsmith

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ca
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Phil,
Thanks for the condolences. The choking is very bad with my Father and all his meals are prepared pureed (which he still has trouble getting down). He thinks if he gets the feeding tube he will end up "locked in". From what I have read on this site, the feeding tube doesn't necessarily extend life, rather improves the quality. This is what I have been trying to explain to my Dad. It is really hard to watch someone who has always been strong and healthy end up this way. This disease is BAD!
Thanks again,
Allyson
 

phil-jr

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Joined
Sep 18, 2007
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Loved one DX
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n/a
Country
England
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Middlesex
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Harrow
Hi Allyson

From what I know you are right about the tube not extending life and it instead is to improve the quality of life. My Dad is not ready for the tube just yet and I'm sure he will be reluctent when the time comes, as anyone would be. I tollaly understand your frustrating feelings with regard to how healthy your Dad used to be, My Dad was harldy ever sick, you will see from one of my previous entry's that he was a professional Saxaphone player and played music all aroung the world. It's so frustrating because you know that the exact same person it still inside but they can no longer express themselves as before. Keep telling him you love him. You are in my thoughts.
 

nsmith555

Active member
Joined
Feb 27, 2007
Messages
67
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03/2007
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OK
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Guthrie
Allyson and Phil,
Welcome.
I'm also in your boat - my mother, 75 years old, has bulbar ALS. She cannot talk, eat or drink. She has a peg tube. At first she did not want it - I think mainly because it meant this disease was progressing - but she started choking so badly that it scared her and so she got it and is glad she did. Before she felt hungry a lot - because she couldn't swallow enough food to fill her up. Now she says she never has hunger pains. I think it does improve quality, and possibly quantity as a person would surely die sooner if they weren't getting proper nutrition and hydration.
There is a lot of support here. If I can be of any help to you, please don't hesitate to message me.
God bless you!
Nicki
 

phil-jr

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Joined
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Messages
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England
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Harrow
Thankyou to all who have contacted me, My heart goes out to you. I have been given information that I did'nt want to hear but needed to know.

I will keep you and all who suffer in my thoughts and prayers. God bless
 

CindyM

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Hi phil-jr, You are very welcome. Glad we could be of some measure of support in this difficult time. write back and tell us anything that is on your mind. Peopel are always willing to share and answer questions. Cindy
 

Al

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10/2003
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On
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Phil and allyson. I'm not sure where you read on here that a PEG tube won't prolong your life. Without it you will either choke on food or starve yourself to death. Taking food through a tube will definately prolong your life and greatly improve the quality. It takes away the fear and anxiety of choking. It won't keep you locked in unless you let it. My friend that had one went everywhere and even used to come here for dinner. We'd hang his bag of Ensure and he'd sit and talk to us as we ate. Getting it sooner is better than later.
AL.
 

allysonsmith

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family
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san diego
Thanks everyone for all of your feedback. Although, I have a few more questions to burden you with.
Do most people with ALS get the peg tube? Will it get to a point where my father can no loner swallow at all, and at this point is it too late for the tube?
Sorry for all the questions, and thanks in advance to all.
Allyson
 

hboyajian

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It can get to the point where your father can no longer swallow at all. Before that point it becomes increasingly laborious and difficult to eat (even the pureed diet), and the amount of weight lost can negatively affect a person's health and vitality. Keeping hydrated sufficiently is also a problem, as liquids might be more difficult to swallow than solid foods. Liquids need to be thickened, and it is difficult to get enough this way without a PEG tube to supplement at first and later become the sole source of both nutrition and hydration. A major factor in the success of the PEG tube surgery is having it done before the lungs are so compromised by the illness that you do not tolerate the anesthesia well. It can get to be too late in the stages of ALS to have surgery done as safely. Holly
 
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