Old 03-10-2018, 08:24 PM #1 (permalink)
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Default Trouble breathing?

I was diagnosed with progressive bulbar palsy in January. My speech has been increasingly difficult to understand but I expected that. I am noticing difficulty with breathing in the last two weeks. If I cook, it is hard to breathe. If the house is too warm, hard to breathe. I canít seem to breathe well around candles and tonight we spent the night at a casino and the smoking nearly choked me. It seems to be if the air has an odor to it that causes the most problems. Anyone else have this issue?
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Old 03-10-2018, 09:27 PM #2 (permalink)
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Default Re: Trouble breathing?

We have discussed this before and it seems true (have you tried the Search link at the top right?). Try a fan, esp. at night, and I believe there are non-smoking casinos. It seems only logical that as the muscles that control the cough reflex weaken, irritants such as odors and "heavy air" trigger a respiratory response. And there is flat-out airway collapse and spasms, where you are having to work harder to maintain air flow even if you are not yet on BiPAP.
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Old 03-17-2018, 08:58 PM #3 (permalink)
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Default Re: Trouble breathing?

Itís been a week since I last posted. Unfortunately I decided to treat my husband and son to an Italian duck dinner. The heavy smell of garlic and sage and olive oil in a hot oven threw me over the top! By 10:00 I couldnít breathe and spent 4hours at the ER for a breathing treatment and chest X-ray. I have a nebulizer from several years ago. Do ALS doctors agree with albuteral and a nebulizer for help with heavy air? Also wondered if maybe a humidifier helps this situation. Scary evening since it has never been that hard to breathe. Iím looking for something we can do at home since we are in a college town and the ER at our hospital on a Friday night isnít something Iím crazy about dealing with again,
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Old 03-18-2018, 01:22 AM #4 (permalink)
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Default Re: Trouble breathing?

Most PALS will not benefit from a nebulizer/albuterol since asthma has different causes/effects than the breathing restrictions and obstructions that PALS experience. It does not really treat the problem in ALS, since it makes the airways bigger but does not make the muscles that move the air any stronger. So you are increasing the diameter of the pipe but not providing any extra air (as, for example, the BiPAP does -- where do things stand on that, Idaho?)

Also, relaxing the lung muscles as albuterol does, may actually make it harder for a PALS to push air -- because the muscles around the chest/throat are already increasingly floppy anyway.

Additionally, inhaled beta agonists can raise heart rate, cause nausea and tremors, among other side effects, which are often uncomfortable for PALS.

I'm glad the breathing treatment in ER helped, but, as you point out, it's not a long-term solution. I would really consider the BiPAP, even if you only use it at times like these, for a start. As for prevention, maybe next time season the duck later in the cooking process or let each diner season to taste? And get a new/better fan for your kitchen/crack the windows?

A BiPAP will have a humidifier built in. But if your indoor air is dry (your skin cracks, you get static shocks, etc.), a humidifer is a great idea to try. To avoid the ultrasonic dust that some humidifiers create, try the evaporative type.

Best,
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Old 03-18-2018, 12:57 PM #5 (permalink)
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Default Re: Trouble breathing?

Thanks, Laurie, for all the information. That really does help. I have only had one appointment at the ALS Clinic at UCSF and that was more to complete a diagnosis and have the EMG and information for a starting point really. I am scheduled again for April 6th and wonder if I should notify them of the breathing issues so that perhaps they can schedule some breathing tests. UCSF is 3 1/2 hours drive from our home in California so it is difficult to just drop in for tests. I haven't had any lung or breathing tests. My oxygen level at the hospital was 99 so don't know that a BiPap would be something they would order. I'm so new at this that I don't know what to ask or what to expect. The fact that we live part time in Idaho and part in California just makes it even more difficult.
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Old 03-18-2018, 04:01 PM #6 (permalink)
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Default Re: Trouble breathing?

Yes, you should notify them about the breathing/ER visit and get the ER records to send them a copy (we recommend everyone keep a copy of all medical visits/tests). There are no guarantees but they may have a cancellation and be able to move you up. Either way, you should have breathing tests at the clinic visit, which I would have expected at the first and all later visits pre-BiPAP.

You might also want to consider how you can ensure access to appropriate expertise near where you live, when you live there. As you know, travel will only get more difficult. A good internist can monitor/prescribe for you, including BiPAP.

Your oxygen level isn't going to reflect your breathing at this point, so 99 doesn't mean you don't have a breathing problem.
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Old 03-18-2018, 05:01 PM #7 (permalink)
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Default Re: Trouble breathing?

Thanks for the advice. I sent a note to UCSF and told them when my appointment was and that we would also be in SF the day before and the day after my appointment. Didnt know about the oxygen level and any relativity. Will go to the hospital tomorrow and ask for copies. Sure appreciate your help. I don't know just how long we will be able to stay in Idaho. We are 50 miles to a grocery store, let alone a doctor! At 6200 foot elevation, this may not be practical after awhile.
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Old 03-19-2018, 01:01 PM #8 (permalink)
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Default Re: Trouble breathing?

Not sure what direction you come from to SF, but there are 2 clinics in Sacramento. There UC Davis and Forbes Norris satellite clinic there also. If you contact the ALS Assn. Sac, they can help you getting in touch. Forbes Norris is out of SF and it is just a part staff crew. I attend Forbes Norris.
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