Working to breath

[zoohouse]

At this point Tim does not have bulbar involvement, so is able to speak clearly, and swallow with no problem. But over the last week I have noticed that he is starting to use his neck and shoulder muscles to take a breath to talk. He sleeps on pillows to make his breathing easier, and asks for his bipap first thing when I get him into bed, and to take it off last when he gets up. I have offered to set it up in the living room so he can wear it when he is up, but he doesn't want to, as he can't speak when he has it on. I have looked into getting him a sip&puff or insufflator in BC but haven't been able to locate one.

I called the VA hospital in Seattle, and they will see him Nov. 2nd, for respiratory work up, and look at increasing the pressures on his bipap. I would really appreciate any advise you guys could give me. I am worried that he will poop out, and get into distress.

I was also wondering if any of you have a diaphragm pacemaker, and whether Tim might be a candidate. It doesn't make sense that it would work, since they tried electric stim on his right calf early on and they couldn't even get it to twitch. I am trying to do anything to postpone him needing a ventilator.

I hate this disease, every time things start feeling a bit normal, something else goes.
Paulette

 

[lgelb]

Re not being able to speak w/ the BiPAP on, it sounds like he uses a full face mask at night, but some people switch to a nasal mask during the day for that reason.
I advise everyone to learn how to adjust BiPAP pressures themselves since there is no guarantee of stable breathing between medical visits. Meanwhile, as I'm sure you are, prepare to bring the machine into the living room on a moment's notice.
It sounds like maybe a little late for the DPS but not sure what his numbers are.
For sure, the VA in Seattle will have access to the equipment you mention, if he is eligible to receive equipment through them.

 

[zoohouse]

Tim uses the nose pillows on his Bipap, but when he opens his mouth to speak it becomes a wind tunnel. The last time his pulmonary functions were done he was at 75%.

 

[patrick123]

I just got a DPS PUT ON SEPT 25th the window to get a DSP is pretty small. My FVC was 68 and you need to have an active phrenic nerve and have a X-ray sniff test. When my Doctor did the EMG for the phrenic nerve he couldn't detect it but the sniff test showed good diaphragm motion. So we went ahead with the procedure. During surgery the stimulate the phrenic nerve directly before placing the DPS. At night I'm on my BiPap all night. And during the few months I use the DPS during the day. I will be monitored every three months at the ALS clinic here in Denver or sooner if I feel I need it to make any adjustments as needed. And just let you know the DPS is timed the same as your BiPap. I also use a the nose pillows during the for the BiPap if I feel I need it. Right now I am the only person at the University of Colo. medical that has a DPS. And I'm part of a ten person study.
I hope this was helpful. I know I had so many questions and still do.

Patrick

 

[Jeff Long]

Zoohouse,
I'm sorry for your & for Tim's troubles. I know that the breathing difficulty is the hardest/scariest thing for me.
Concerning the DPS, I had mine put in this summer after it was determined that my pulmonary function and phrenic nerve were both 'within spec.'
The pre-DPS EMG (OMG, that's alphabet soup!) is on the phrenic nerve only. Very quick, very specific and very painless.
You should ask your neuro about the possibility of testing to see if Tim is a good candidate for the DPS. I would do this before the Nov trip to the VA, so any testing could be completed the same day.
Best of luck to you!

 

[zoohouse]

So to the people who have had the DPS inserted, did the doctors tell you how long it would prevent you from going onto a ventilator? I just spoke to our physiatrist here in Canada, and she said that it is only used for people with quadriplegia. So I guess we will have to see if the VA in Seattle is familiar with them, and if he qualifies, if they can put one in.
His pulse oximeter is showing that his blood oxygen is running around 93-95%, and his heart rate is up around 101-112. She suggested that he wear his bipap at night and put it on a couple of times a day.
It is all so confusing, as his voice, speech, and swallowing are perfectly normal, but now he is so short of breath. I am still trying to get a sip&puff for him. Does anyone else have one, and how long have they been using it?

 

[lgelb]

If the nasal pillows' moving around are keeping Tim from speaking, I would consider a non-pillow nasal mask. It is likely to be more stable. Also consider that during the day, he may well need less pressure to support his breathing, so less "wind tunnel." That's another reason to be able to adjust the settings on the fly so you can have the lowest pressure that maintains his comfort.
If you are interested in the DPS and meet the criteria, agree w/ Jeff to try to coordinate beforehand --might have to go beyond the VA for that. The mfr should have the site list on its Web site.
Re 75% FVC, my guess it is now lower and/or there is more behind the discomfort. Maybe try some mindful slow deep breaths, or, paradoxically, some people do better w/ shallow breathing (less distance between IPAP/EPAP). Play around and see what works best. Also, depending on your machine, adjusting Ti min/max and/or trigger/cycle settings may help.

 

[patrick123]

My doctors told me that it is hoped that being on a DPS would extend the need for a full trach vent by 16 months.i know that in Canada you can't get the DPS for PALS. the doctor who did my DPS was Dr. Onnders he invented the DPS.

 

[lgelb]

Some other potential respiratory helps: herbal nasal inhaler, personal steam inhaler w/w/o essential oil(s), nasal aspirator as is used for kids, room humidifier, upping temp/humidification setting on BiPAP

 

[zoohouse]

So I have applied for a LOA from work for a year, as I am finding work and coming home to care for Tim overwhelming. Now when we go to the VA in Seattle we can stay as long as it takes to get things done. So far they have been extremely accommodating about the equipment that Tim needs, so I am really going to push for the DPS if he qualifies. Otherwise we will work on me learning to manage his bipap better and getting a cough assist machine. I have been reading a lot about respiratory hygiene, and encouraging good expansion, and expulsion of the lungs.

What the doctor told me about ventilators with ALS patients really hit me hard. Other than not being able to move his legs and arms, his weight is excellent, his mental state is better than mine, and he rarely naps during the day. We would like to use NIV for as long as possible, and neither he or I are interested in him going into a care facility.

 

[lgelb]

A pulse in the 100's on a regular basis also suggests more going on than the reduced FVC. I'd make sure he gets a cardiovascular evaluation when he is in Seattle.

 

[FightingAttorney10]

A trilogy 100 or an top of the line LTV 1200 has an excellent sip and puff mode. Furthermore, both vents can be used for invasive ventilation if necessary. I currently use LTV 1200 in sip and puff mode and its precision is amazing. If he is having bad bulbar impairment, invasive ventilation is the best bet in my opinion.

 

[zoohouse]

Thank you FA for the suggestion of ventilators. I had seen the sip & puff ventilator on some program but was unable to find out more in Canada. These discussions have been very timely for Tim and I, as I was going to set some time aside to research different vents, so that when we go to the VA we will have the information with us. It is funny that many hospitals in both the US & Canada are not up to date with equipment that is available. My husband is a computer nerd and is working with the speech therapist on the best tablet to set up for his use. They were still using what is now obsolete equipment. But they were very receptive when Tim showed them his research, and actually ordered what he suggested. The same thing with his motorized wheelchair. Because we live in the mountains, and love the outdoors it was very important to us to get a chair that could stand the rigors of some hiking trails. We ended up getting a Century 21st chair with an outdoor package. We have had many adventures since and Tim loves it. I will be looking into the vents you suggested.
Paulette