Bachelors Dream, no not that
- Status
Zaphoon
Extremely helpful member
- Joined
- Aug 2, 2008
- Messages
- 2,857
- Reason
- DX UMND/PLS
- Diagnosis
- 08/2011
- Country
- US
- State
- Missouri
- City
- Springfield
You might try using the exhaust end of the vacuum to bow the stuff through. I'd try experimenting with powdered sugar first. Cheaper if you blow it a few times. Ha, ha!
handinhand
Senior member
- Joined
- Mar 28, 2009
- Messages
- 908
- Diagnosis
- 02/2009
- Country
- US
- State
- Colorado
- City
- Pagosa Springs
ok I am blond but I have to ask this question anyway? What difference does it make what kind of liquid goes in the tube? If you don't see what is going in how would you know what it is? I went to play cards with the gals on the Ranch today and have lunch. I ate a litle egg salad out of the bread and some jello... Watching everyone eating homemade breads all kinda of chips and dips, apple pie.... I still wasn't done eating my jello when everyone was done. I felt REALLY REALLY sorry for myself. I took my apple ipod to try it out with my friends. I didn't even take it out. I am way too slow to try and keep up with conversation. Feeling really sad and depressed tonight.
BarryG
Extremely helpful member
- Joined
- Nov 19, 2008
- Messages
- 3,000
- Diagnosis
- 02/2008
- Country
- CA
- State
- Alberta
- City
- Hinton
Linda, I really, really know what you mean and I am so sorry that we have to go through this. Yesterday I was feeling exactly the same as you felt today, I couldn't bear the thought of not being able to eat again and it got me very depressed. I don't get depressed very often but yesterday I was tired as I hadn't had a good night's sleep the night before and so for a while I hid away feeling very sorry for myself.
It is awful not being able to eat especially when you are socializing but that is the way it is and there is not much that we can do about it. At least with a peg tube we don't have to be hungry, not the same as actually eating I know, but it's not that bad.
Today was a better day and this evening I made some bran muffins for my wife and a friend and even though I can't eat them they smell good and it made the others happy.
I hope that your friends can learn to give you time to be part of the conversation because we are not the only ones who have to make adjustments. Keep practicing with your new "voice" and your friends will appreciate your contributions to the conversation. I have been speechless for a while now and am only now having somewhat normal conversations but one thing that I can say is that it is harder in a group and especially in a loud group.
In September I had the pleasure of visiting with Joel and his wife Christine at their home and we spent all evening talking, him with his real voice punctuated by the sound of his ventilator and me through my fingers to my artificial voice from my netbook. We talked until my fingers hurt but we talked just like normal people so when there is a will there is a way.
Do you have a speech therapist that you work with? My speech language pathologist is the most important person at my clinic as far as I'm concerned and we talk often with both of us learning.
I hope that you have a better day tomorrow and I know that you will stay strong to give all of us here your help.
Barry
It is awful not being able to eat especially when you are socializing but that is the way it is and there is not much that we can do about it. At least with a peg tube we don't have to be hungry, not the same as actually eating I know, but it's not that bad.
Today was a better day and this evening I made some bran muffins for my wife and a friend and even though I can't eat them they smell good and it made the others happy.
I hope that your friends can learn to give you time to be part of the conversation because we are not the only ones who have to make adjustments. Keep practicing with your new "voice" and your friends will appreciate your contributions to the conversation. I have been speechless for a while now and am only now having somewhat normal conversations but one thing that I can say is that it is harder in a group and especially in a loud group.
In September I had the pleasure of visiting with Joel and his wife Christine at their home and we spent all evening talking, him with his real voice punctuated by the sound of his ventilator and me through my fingers to my artificial voice from my netbook. We talked until my fingers hurt but we talked just like normal people so when there is a will there is a way.
Do you have a speech therapist that you work with? My speech language pathologist is the most important person at my clinic as far as I'm concerned and we talk often with both of us learning.
I hope that you have a better day tomorrow and I know that you will stay strong to give all of us here your help.
Barry
KeeKer
Senior member
- Joined
- Nov 17, 2008
- Messages
- 834
- Reason
- Loved one DX
- Diagnosis
- 08/2007
- Country
- CA
- State
- SK
- City
- Theodore
I'm so sorry that you two had crappy days!
But Barry is right! We will wait because we really want to hear what you have to say! We are happy you are sitting in the room with us!Sorry that you can't eat, but we understand and will wait for you. Any conversation, no matter how slow is better than none!
But Barry is right! We will wait because we really want to hear what you have to say! We are happy you are sitting in the room with us!Sorry that you can't eat, but we understand and will wait for you. Any conversation, no matter how slow is better than none!
joelc
Moderator emeritus
- Joined
- Jul 15, 2006
- Messages
- 2,835
- Reason
- PALS
- Diagnosis
- 09/2005
- Country
- CA
- State
- BC
- City
- Abbotsford
Sorry you guys had a crappy day, but I am glad things seem to be better today. It is quite natural for these times to happen, the trick is to get over them and not have them every day. These short periods of time are actually a healthy thing, and part of the grieving process. They help us adjust to the new reality of our disease.
Barry, Andrew, Christine and I had a wonderful time, I just wish more of that could happen.
I was reminded, yesterday at our support group meeting, how important it is to be considerate of others that can't talk as fast. We had a new person there and although she has ALS, bulbar onset, she absolutely monopolized the conversation and constantly interrupted others when they tried to talk. I can still talk but it is a bit choppy because of the vent. She would ask me a question and then interrupt me with a different question before the first was answered. She was doing that to everyone. I felt particularly sorry for another person using a light writer to talk because he would try to respond and by the time he did the conversation was 3 topics past where he was. We eventually gave up trying to respond. It was the longest 2 hours I can remember. We were exhausted by the time we left.
It is very important for people to be patient and considerate of others and wait for them to respond. What's the hurry anyway? LOL.
Barry, Andrew, Christine and I had a wonderful time, I just wish more of that could happen.
I was reminded, yesterday at our support group meeting, how important it is to be considerate of others that can't talk as fast. We had a new person there and although she has ALS, bulbar onset, she absolutely monopolized the conversation and constantly interrupted others when they tried to talk. I can still talk but it is a bit choppy because of the vent. She would ask me a question and then interrupt me with a different question before the first was answered. She was doing that to everyone. I felt particularly sorry for another person using a light writer to talk because he would try to respond and by the time he did the conversation was 3 topics past where he was. We eventually gave up trying to respond. It was the longest 2 hours I can remember. We were exhausted by the time we left.
It is very important for people to be patient and considerate of others and wait for them to respond. What's the hurry anyway? LOL.
BarryG
Extremely helpful member
- Joined
- Nov 19, 2008
- Messages
- 3,000
- Diagnosis
- 02/2008
- Country
- CA
- State
- Alberta
- City
- Hinton
Joel, I hope that "Chatty Cathy" can come to terms with what is going to happen to her. It must be very hard for a normally talkative person to adjust, maybe she is just trying to say everything while she still can.
One thing I have started to do is put the context or the topic into my replies so instead of saying "he did this", I say "Bob did this". The same goes for objects too, instead of "it", I say the name of what I am talking about. It takes a little longer but if the conversation has moved off of the topic then everyone knows what you are talking about and you are reminding them to not change the subject until you are done talking.
In E-triloquist www.[B]etriloquist[/B].com/ there is a preprogrammed noise that sounds like an elephant trumpeting which can be used as an attention getter, a conversation stopper or just for for fun. I have used it!
One thing I have started to do is put the context or the topic into my replies so instead of saying "he did this", I say "Bob did this". The same goes for objects too, instead of "it", I say the name of what I am talking about. It takes a little longer but if the conversation has moved off of the topic then everyone knows what you are talking about and you are reminding them to not change the subject until you are done talking.
In E-triloquist www.[B]etriloquist[/B].com/ there is a preprogrammed noise that sounds like an elephant trumpeting which can be used as an attention getter, a conversation stopper or just for for fun. I have used it!
handinhand
Senior member
- Joined
- Mar 28, 2009
- Messages
- 908
- Diagnosis
- 02/2009
- Country
- US
- State
- Colorado
- City
- Pagosa Springs
Hi Friends...smile! Today is a much better day for me. I have kept myself so busy this week that I think I was just worn out. Not a good thing to do... Finding out the hard way. We need to pamper ourselves and deserve to ..... My friends and family try really hard to stop and listen to me when I talk. They are really trying hard to adjust to this also. I just need to buck up and get a little stronger about the loss of my voice. Like that sweet little five year old boy said, { the machine wouldn't talk if grandpa wasn't making the words come out of the machine.] How true. Children are soooooooooooooooooo wise..... Thanks for all the good responses. appreciated more than you can know. Big Hugs, Linda
joelc
Moderator emeritus
- Joined
- Jul 15, 2006
- Messages
- 2,835
- Reason
- PALS
- Diagnosis
- 09/2005
- Country
- CA
- State
- BC
- City
- Abbotsford
Linda, it is good to hear today is better! I am finding that my biggest enemy is being tired so I try to make sure I have a minimum of 10 hours a night. If I don't that is when problems happen. Thankfully they are few.
GlenBrittle
Very helpful member
- Joined
- Oct 9, 2008
- Messages
- 1,540
- Reason
- PALS
- Diagnosis
- 10/2008
- Country
- CA
- State
- Ontario
- City
- Alexandria
Today has been a good day. I went grocery shopping for the first time in 8 months.
There were many people saying "Good to see you out" "Looking good" "Keep going".
People will back off when they see the chair coming.
But now I am tired. Need to do it more to build up some stamina.
Glen
There were many people saying "Good to see you out" "Looking good" "Keep going".
People will back off when they see the chair coming.
But now I am tired. Need to do it more to build up some stamina.
Glen
GlenBrittle
Very helpful member
- Joined
- Oct 9, 2008
- Messages
- 1,540
- Reason
- PALS
- Diagnosis
- 10/2008
- Country
- CA
- State
- Ontario
- City
- Alexandria
Ya , I know , its just the freedom is clouding better judgement. For now
Thanks for the reminder my friend.
Glen
Thanks for the reminder my friend.
Glen
- Status
