rafiksq

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My wife sometimes at night or day depends on the position of complaining about breathing problems, always helps open the window, today I arranged for a oxygen concentrator. We don't know anout any result becouse she has stared use from 30min. Are there any other methods to improve breathing? I do not know if it's an infection or it's really attacking the respiratory. My wife also complains with problems with stuffy nose, mainly caused by crying/cried and not being able to blow. Any pear/idea? Sorry for my english but not have time to looking for a corect words. Please help me!
 

Nikki J

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Oxygen is usually very bad for people with ALS and contributes to CO2 build up which is very dangerous.
Unless there is a solid reason for it through medical tests please stop it
I gather she does not/ you can not get bipap?

Position for comfort keep her well hydrated. If you can get a saline nasal spray and a steroid nasal spray it might help congestion a bulb syringe as you would use for a baby.
 

rafiksq

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In Poland for bipap you mas waiting a lot of time - year. The cost of equipment it's about $3000.

Which bipap it's the best ?
 
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beauty4everyone

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I'm curious. If she breaths better at night with the window open, is the incoming air cold or warm; dry or humid?

Since I was a teenager, I discovered I breathe better when air is cool and dry. Conversely, heat and high humidity makes breathing difficult when congested.

You could adjust the room temperature to suit her needs. A small fan blowing over a small bowl of ice for cooler, or dry heat.

If not allergic, a decongestant can help dry up sinuses. As mentioned, a salt spray and steroid spray can help, too. Check with your doctor first.

May blessings abound. B.
 

lgelb

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Rafik, you can get a used BiPAP shipped to Poland. I recommend SecondWind CPAP. Their inventory changes, but any of the BiPAP machines marked "backup rate capable" or with an "ST" in the name would work. Let me know if you need help if you look at their site. They have new and used sections, and also open box specials that can be good deals.

I would try a nasal steroid first for congestion (and the baby nasal aspirator) because decongestants can leave dried secretions in the sinuses. Keeping the furnace filter clean and avoiding dust near her may also help, and warm liquids. And a fan to blow air near her.

Drinking enough is always important, and some people find that pineapple or papaya juice can be helpful if there is much mucus.

As you have just read, oxygen is a bad idea for her.

Best,
Laurie
 

rafiksq

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What's the price of used bipap? What's a differences between bipap and non-invasive respirator ?
 
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Diane H

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BiPAP is one brand of non-invasive (uses a mask, not a trach) ventilator. It is confusing because people use the brand name BiPAP to refer to any brand of Bilevel ventilator.
Do not get a CPAP machine. It is not for ALS patients because it makes it hard to exhale.
She should not need oxygen when she is on the BiPAP machine. Her lungs are fine and can absorb all the oxygen she needs from the air. The problem is that her chest muscles are weak so she cannot breathe deeply enough to get enough air in. The BiPAP will push enough air in to give her lungs plenty of oxygen. If she is using oxygen already, she may be afraid to go without it. Once she is used to the BiPAP, try to reduce the oxygen gradually to simplify things. If she does want the oxygen on, it should NOT be used without having the BiPAP on at the same time! Oxygen without the BiPAP can reduce the rate and depth of each breath and can be dangerous.
Do you have a doctor or respiratory therapist who can help with the settings for inspiration and expiration on the BiPAP? Many doctors are not familiar enough with BiPAP to know the best settings to begin at. Laurie (lgelb) is very knowledgeable about that and I am sure she can help you.
 

rafiksq

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ok thank you, but can you recommended me a good bipap to buy in Europe avaliable ?
 

lgelb

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Here are some possible resources for buying a used or new BiPAP in Poland. I know nothing about them but got them from Dotmed. As Diane points out, make sure you say that your wife has ALS and needs a BiPAP with a humidifier and backup rate. They may have some that are portable and can go out with her when she is in a wheelchair, and others that are only for home because they do not have a battery. You can decide what is best.

Arkadiusz Stotko, Arestomed
Pomyslna 3
Opole, 45-920 Poland
Phone: +48 48512917669

Richard M. Szkocny, Medical Equipment
Rzemieślnicza 54
Przezmierowo, Wielkopolskie 62-081 Poland
Phone: +48 601333666

Lukas Prais, CEO
Gorowska 32
Leszno, Wielkopolska 64-100 Poland
Phone: +48 665345001

Greg Kozluk, Mgr. inz
Sp. z o.o. Sw.Wojciecha 19
Lublin, Poland 20-830 Tel. Poland
Phone: +48 791107292

Rafal Pizon, Medsystems
ul. Inżynierska 8G
Lublin, 20-484 Poland
Phone: +48 0048535156650
 

rafiksq

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You have als and your husband died too on als ?

My wife breathes perfect outside, sha just has a problem in home. All depends how she lies or sits.
 

lgelb

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No, I do not have ALS. The "diagnosed date" is for people to understand my context; you will see other present and former caregivers who have one also.

She may be fine outside now but as she progresses, that will likely become hard as well. So I would take that into account.

Best,
Laurie
 

KateEmerson

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I don't know what positions your wife has trouble breathing but lying flat in a bed is usually a problem. It helps to raise the head of the bed or put a wedge or pillows behind the head and upper body. Kate
 

rafiksq

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You know how to check what it's couse to problem with breating? The muscule or any infection in lungs ?
 

lgelb

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Yes, we recently had a thread discussing having a foam overlay for comfort in a hospital bed, with feet slightly elevated as well as head, for better breathing as well as reducing muscle pain.

Does your wife have a hospital bed? The dealers I listed could perhaps help with that as well.
 

rafiksq

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No, she hasn't becouse just mattress is important. We have very good mattress on our double bed. It's so comfortable.
 
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