The Bulbar Roller Coaster

[thelma313]

That is a great tip BethU, thank you! I just told my Dad about it. He also has a heck of a time with pills and he too loves yogurt.

All the super best best best to you and Wendi too! Warmest wishes, Ladies.

 

[andyvaughn]

Thelma,
I don't know if this will help, but it sounds like my Jim and your father are very similar. Jim would NOT consider taking anti depressants for the emotional lability. Yet, he was suffering so badly from it, to the point that he wouldn't go out of the house due to fear he would cry/laugh uncontrollably. I finally sat down with him, and explained, with the help of the ALS doc, that emotional lability is a symptom of ALS (bulbar ALS) and that is one of the few things about ALS that can actually be treated. That he had a disruption in his brain, (the bulbar area of the brain is responsible for emotional lability) that had NOTHING to do with mental illness. Jim finally relented and began taking very low dose lexapro. (I don't know why he was so scared of it being "depression", it never seemed rational to me, I mean, if you are depressed it is good to treat it if you can, no?) It was almost immediate improvement,and he never again suffered from the feeling of being held captive to his emotional upheavals. He of course still cried, laughed and experienced the entire spectrum of human emotion, but it was all appropriate and proportional to the circumstance. He even looked at me about a week after he started the lexapro, and said with a devilish grin "why did you make me wait so long to start taking this stuff?!".
Maybe if your father is approached in this light, he will see it for what it is, not an emotional disturbance, but a symptom of ALS that can indeed be corrected.
Andrea

 

[BarryG]

mini pc and E-triloquist

Hi Tfisher;

A couple of posts back you said:

My dad and I just bought my mom one of those mini pc's and put the etriloquist software on it and it has a camera so she can gmail with people and see them, she is still getting aquainted with it but I think it might be easier than the lightwriter since that keyboard is not set up like a regular keyboard.

I am considering getting a 10" netbook to use with e-triloquist as a back up to my DynaVox Palmtop3 and I was wondering how your mom is making out with hers. How is the sound quality and volume? Is the keyboard of a reasonable size to be able to use? My speech is difficult for most people to understand so I need all the help I can get and would appreciate knowing how your mom is making out with her new "talker". I use the E-triloquist program on my desktop PC for answering the phone and it works great and I would like to have it on a more portable device.

Thanks

Barry

 

[Jennifer51]

I bought a samsung 10 inch netbook, as it had very good revues, the keyboard is almost full size qwerty, so it is good for people who can actually type, or could pre the beast. I am still managing to touch type fortunately. The sound is reasonably loud but it is a bit of a battle in a room full of people, very good for only 2 or 3 people in a conversation. i have etriloquist and found I needed a british voice to make it more understandable this side of the pond, and you need to get the speed of the speech right for you...we went out today and it was not suitable to use it, went back to paper and pen...get me back to my netbook, it really is my best friend now. I had the litewriter and could not get on with it purely because of the size of the keyboard. Hope this helps.

 

[BarryG]

Thanks Jennifer, I am using the E-triloquist program on my desktop PC and have played around with the voice speed and pitch and I'm quite impressed. it doesn't have the word prediction that my DynaVox has but I find that when I'm typing I'm not looking at the predicted words anyway (ie i"m looking at the keys, not much of a typist). Thanks for your help.:grin:

 

[thelma313]

Andrea, thanks for the advice. I am planning to attend my Dad's next doctor's appointment and prior to that I want to discuss his emotional lability. I know he's embarrassed when he cries although it's never been inappropriate. He does not seem to laugh uncontrollably either. I think he'll be open to it now. I feel like enough time has passed since we last discussed it for him to realize that it would be better for him not to cry so much.

I wish you and Jim all the best!

 

[Wendi]

Very interesting and helpful all the hints and tricks. Also the machines for speech, have yet to work out that, have got my son looking into that for me as he is much more computer/technical literate than I. Need something as I have got to the writing notes stage.

I am going to try taking my meds with yogurt of something similar, I find one lot I can chew up with a soft cookie, sort of melts, and it is fine. But the other - Amitryptiline.... which I have taken for many years to help me sleep (I also have ME/CFS) has a revolting taste, and gets stuck in my throat and is ghastly. Need something real powerful to take that taste away.

I have not experienced emotional liability, maybe because I take the Amitrypt...? I remember when I first took Amitrypt how dry I felt, so it does dry you up. Helps with sleep too.

Thanks everyone for your help and support. You are all amazing!

 

[Tfisher]

BarryG,

My mom hasn't really been using it much, I don't think she realized it was wireless so she could just grab it from where I have it charging for her and take it with. I need to spend more time with her to help with that and using her camera on it to instant message and see people with her little camera. I was most impressed with the sound on the HP compared to any of the others (I think there are a few HP models, 1000 and something else but it is the one that is around $350) but ended up with the Eee pc that was rated around the same as the HP but had more memory space than the HP. The keyboard is very close to normal size, I tried the really small ones at first and thought about buying one for myself because they were so cute but I wouldn't have been able to type very well on them and I have small hands. I guess I shouldn't have said that the lightwriter keyboard isn't set up like a regular one, I just meant that the space bar is offset from a normal keyboard and the typing isn't as fluid. Good luck and let us know if/when you buy one.

Tfisher

 

[BarryG]

Tfisher, thanks for the info, I was looking at a 10" Dell. That size seems to be the best mix of portability and function for the price, I'll let you know.

Thelma313, sorry I didn't mean to hijack your thread. As far as the bulbar roller coaster goes I also have been more emotional since my diagnosis than I was before but not in an (at least in my view) inappropriate manner. I cry or want to cry more than I ever did before but mostly it's out of frustration. I think that emotiional lability in bulbar ALS patients is as variable as every other aspect in this disease seems to be and maybe I'm just lucky that it hasn't affected me. Crying or laughing at inappropriate times or for no reason is emotional lablility, crying because you are sad or frustrated is not. That said, if someone needs medication for depression or because they are crying all of the time then they should have it. There is no point in being gloomy when you have a life to live. All the best to you and say hi to your father for me.

Wendi; go for the PEG tube. I have only had mine for about three weeks and so far use it only for for formula. With the formula and my high protien diet I have gained 3 pounds in a week. It's well worth it.

Barry

 

[thelma313]

Barry, I am thrilled to hear that you have gained 3 pounds! That's so great. I will definitely tell my Dad about that and of course tell him you say hi. He'll be touched.

My Dad definitely does not laugh or cry at inappropriate times. He cries when something makes him sad or touches him. I think he just can't hide his emotions or keep his stiff upper lip the way he used to. He hasn't had any laughing fits either. He still just laughs the way he always did, especially at "Everybody Loves Raymond" reruns (his favourite show.)

I am happy to report that I have made arrangements for my parents to drive back to Canada from Florida with my wonderful and generous cousin who will do all the driving. Also they are coming back 10 days before previously scheduled which makes me happy because I advanced my Dad's appointments so he'll get his PEG even sooner.

Barry, you did not "hijack" my thread! All of the information on this thread is appreciated and important to me. In fact I am glad it's still going. Have a great day!

 

[Tfisher]

BethU,
Have you blended any food and put it in your tube? Do you get a little flavor from it? My mom no longer wants me to blend anything to try to eat by mouth but if there is a little enjoyment through the tube it may be worth a try.

When will you have time to get back to your blog?

Tfisher

 

[[email protected]]

My husband was diagnosed with ALS in July 2008. His started with the bulbar onset. We know this now as hindsight is 20/20. He is on Ritulek. I see him getting thinner and I hope he will opt for the peg feeding tube soon.

 

[Jennifer51]

My husband was diagnosed with ALS in July 2008. His started with the bulbar onset. We know this now as hindsight is 20/20. He is on Ritulek. I see him getting thinner and I hope he will opt for the peg feeding tube soon.

Welcome but sad you are here.. I was diagnosed with bulbar a few months before your husband and as you say, with hindsight. There are quite a few of us here with bulbar, so you are sure to get some help with anything you might need to know. We are here for each other to help in any little way we can.

 

[BethU]

TFisher ... I have taken my mighty milkshake by tube, but get no flavor at all. So I still drink it by mouth when I can get it down that way, cause it tastes pretty good.

Only thing I've gotten a little satisfaction from is Coke, which is to dissolve clogs, but buzzes and fizzes when I pour it in the tube. I have to start getting adventurous, especially with meds. They are becoming a struggle again, even with yogurt.

I've got to get back to the blog again. Lord knows, I've got enough material. :lol: Thanks for asking!

 

[Ellamay]

My husband was diagnosed with ALS in July 2008. His started with the bulbar onset. We know this now as hindsight is 20/20. He is on Ritulek. I see him getting thinner and I hope he will opt for the peg feeding tube soon.

My husband was diagnosed Nov 2008. He finally agreed to go ahead with the feeding tube. It was not an easy thing as he was not inclined. Never spent a day in the hospital that sort of thing. But he has adjusted and it's only been two weeks. I am slowly increasing the feeds. We even used the pump as the syringes were getting "worn out". So it is quieter as he chokes and coughs less when he feeds with the tube. Medication is a breeze as he could no longer swallow pills. I hope that he will feed more and more with his tube.