Need your help on talking and breathing

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Filmmaker

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Joined
Nov 24, 2011
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76
Reason
PALS
Country
CA
State
Québec
City
Montreal
Hi everyone
Up until few weeks ago, my breathing was ok, but now i think my abdominal muscles are so week that i can only breath when I am laying flat. I have also noticed to my big despair that I am very short of breath when I start talking and even worse when i start laughing...
Now, what is the next step? I have an appointment scheduled with the pneumologist net Thursday but what am I suppose to request? Should i enquire about bipap, tracheotomy...?
I would like a way to e ale to speak and not be gasping for air, is there a way to get that or am I just dreaming?
I used to be a funny person and always laughing now i have to watch myself, that is absolutely terrible!
 
we talked about vents at the last support group meeting. because of the legalities in my state, combined with the very effective non-invasive tools, i will not do a vent, just a bi-pap. are you already getting help with breathing?
 
No, no help yet though i really need it now, that's why i'm asking i have no cue what to ask for and how it works, and to what extend it does help or not... Thanks for the responses!
 
You will want at least a ST Bipap someone mention Avap I don't know anything about this one but it may be better than the ST but the ST if you don't take a breath in 12 it will give you some air the first one they gave me would not do this. At the same time I got the Bipap I got a oxygen machine it is not liquid oxygen and never has to be filled. I was told only to use if and when my oxygen was below 90 I have only use it 3 or 4 times then only for a short period of time.
 
Check the archives for older threads with tags like Bipap, breathing issues, noninvasive ventilation.
 
momap I did check archives for resathing issues but most of them are either technical or don't answer my questions: i'm not sure i want noninvasive ventilation, maye i want invasive help, i don't know what each of those things implies and how much enefit we get from them... simple question: if i had a bipap would i then be ale to talk and breath with no pb?
 
Filmmaker:

My husband uses a full face mask with a bi-pap at night. He is very comfortable and breathes easily. He has been using it for over two years.

During the day, he uses a different non-invasive ventilation, which is portable: the Trilogy. He uses the Swift FX headgear with nasal pillows (ResMed) and has adapted to it successfully (regarding speech). He has also learned to eat with it on (except for soup). Our kids will be with us tomorrow for Father's Day. As always, he will hold his own in the conversations.

Ask your pulmonologist about the benefits of non-invasive vs. invasive ventilation. Also ask which he would choose if he were in your shoes. Finally, ask him to estimate the number of hours of round the clock caregiving that would be required with a trach/ventilation.

Over time, both methods of ventilation prove useless in the face of the relentless progression of this disease. Factor that in as you work toward a decision.

Good luck.

VL
 
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Yes to both questions but with the face mask on the bipap its harder to talk with the mask I sleep in the mask I use a nasal mask in the day and with that you can talk on the phone or you can drink with it. Mine does not cover my nose but goes in my nose it is not uncomfortable.
 
Over time, both methods of ventilation prove useless in the face of the relentless progression of this disease. Factor that in as you work toward a decision.

Please note there are many vent users who would disagree with that statement. Some have been on the vent for many years, and would not consider it useless. True the body will continue to decline, but many vent users I think would say invasive can be sustained indefinitely. I'm not trying to swing anyone either direction.
 
Thank you, BrianD. You are correct, of course. All ventilation is useful. Perhaps a better word would have been futile--in the face of a disease that is defined by the medical community as inevitably fatal.

None of us can walk in another's shoes. And we can agree that there are widely differing perspectives among ALS patients. Filmmaker is performing due diligence and I'm sure would like to hear from many vent users to understand the benefits and drawbacks of both tracheostomy and non-invasive ventilation.

Filmmaker: I can tell you this--my husband is one of those most unfortunate few who presented with respiratory onset. At the time of his diagnosis in March 2010, his FVC was already in the low 60's. However, his forced vital capacity has held steady at 47-48 for months. Our doctors believe it is because he started nighttime bi-pap early and utilizes the Trilogy ventilator for most of the day. He lives a fairly normal life and requires only minimal assistance at this point.

Our hope is that research provides a way to stop the progression of the disease. In the meantime, we focus on quality of life.

I hope others will join the discussion and give you some pros and cons from their points of view.

Regards,
VL
 
VL, My husband uses a Trilogy 100 Ventilator too and he loves it. According to his RT, it's the "new" next step after bi-pap. It's actually a tracheostomy machine with an external vent hose that can be used with a face mask or nose pillows. The bi-pap just blows air into a person but this vent machine actually "breathes" with you and it's gentler. If you hold your breath, it stops too. His doctor thinks it's a wonderful alternative to a trach for someone who does not want one. Of course, eventually, even this machine will not be enough, and it will be a trach or nothing, but it's perfect for my husband right now.
 
Hi, dragonflydi: great to hear your husband is benefitting from the Trilogy. It has made a huge difference in our lives. The portability ensures that we can go to medical appointments, haircut appointments and family events without concern. We have two of the external batteries and I rotate them. I also purchased an extra cord to keep in our media room.

Thanks for weighing in on this thread. It's important for people to understand their options.

VL
 
Hello Filmmaker,

It's nice to see a fellow Canadian on this site although I'm sorry that we have to be here. I can see that the progressive loss of speech has been devestating for my husband as well but he has begun to use the text-to-voice software on his (RIM) Playbook and I-Pad. He is known for his great sense of humour and quick wit so we've had some fun with the I-Pad, in particular, the pronounciation of certain (profane) words that it doesn't recognize. I've started to keep an electronic journal of the witty things that my husband says and will treasure them forever.
 
Filmmaker, Is the pulmonologist you are to see familiar with ALS patients? If you're not sure, it would be good to find out, and if he or she isn't, the ALS clinic you attend will have someone to recommend.

It is unusual that you find it easiest to breath while laying flat, as that is the exact opposite of what is true for most PALS or others with "restrictive" breathing issues. When we are sitting up, gravity works with the diaphragm to expand (downwards). Good luck to you.
 
VL, I'm interested in your external batteries for the Trilogy. Tom's machine has an internal battery that's good for 6 hours. Does the external one extend that or do you have a different machine? Thanks--Diane
 
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