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dana

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I went to dinner with my husband, son, and parents tonight, and my dad choked while trying to eat a spring roll. This was the first time I had seen him choke, and it scared the living crap out of me. He is fine now, but I got to see first hand of what happens when the choking occurs. He was coughing trying to get the spring roll down, so I knew that he was breathing. But, I could tell that his breathing was weird because something was lodged in his throat. He stood up and started to walk away (I think he was embarrassed and panicked), and I followed him thinking I was going to need to do the some CPR. He ended up getting the food down, but I know it scared us all. He said he took to big of a bite, but I doubt that. I asked him if he has ever choked when he was alone, and he said no. My question is what should he do if he is alone and he chokes? Some of you had given me some suggestions about putting his chin towards his chest when he swallows, and I passed that along to him. I also was told that drinking thicker liquids helps too. For those of you with the Bulbar symptoms, does this choking thing get worse? I know that a feeding tube will probably be in the future. My dad has not lost any weight yet because he is able to eat pretty much anything he wants, but if he continues to choke, we will have to make some changes in his diet. My mom also told me that his breathing seems irratic. He is going in for a sleep apnea test next week. She said that he holds his breath for a few seconds while he is asleep, but she said that he is starting to do it during the day too while he is awake. My dad is aware of it. Is this normal with ALS? I know that people wear masks while they sleep, but is this something people do during the day too? I'm just curious what is going on with his choking and now the breathing too. Are the two connected somehow? I will take any suggestions and helpful hints. THANKS!
Dana
 

Danni

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Choking:

Dear Dana,

Yes, when they choke or strangle on liquid, it is scarey as anything. We have found that for Doug, he just had to start thinking about what he was doing, just being very deliberate with each part of chewing & swallowing. Tucking the chin does help.

Take courage. And this is IMPORTANT: If he is NOT using a BiPAP with nasal mask at night, his CO2 levels are probably way too high. In the U.S., an ALS patient does NOT have to have a sleep study to qualify for a BiPAP. The doctor and respiratory suppliers should know this.

Respiratory insufficiency caused by muscle weakness from ALS is VERY different from apnea and respiratory diseases. His lungs are not affected. only his muscles. Please check out www.doctorbach.com, the website of Dr. John Bach, head of the Jerry Lewis MDA center at the medical school in New Jersey. He is the leader in noninvasive ventilation. He has written 2 very good books about noninvasive ventilation and managing patients with MNDs. They helped me tremendously, because out here in the boon docks of the SW, most medical professionals don't know zip about ALS, or lyme either, but that's another thread.

Our neuro thought my husband needed a peg asap because he was choking/strangling. As it turned out, his FVC had dropped to 47%, and no one ever Rxd a Bipap. He was falling asleep in his chair, nodding off almost in the middle of conversations, startling to drool, lips were dark. He was having headaches, but he didn't tell me because he didn't want to complain. When the RT asked me about Doug's bipap and i said he didn't have one, the blood literally drained from his face. Once Doug got it, his headaches went away, his color improved dramatically, his speech got noticably better, and he very rarely choked on anything.

Don't waste time and money on a sleep study. It is not required with ALS. I've got the paperwork that says so somewhere, but your docs should have it. Call the MDA. They ought to know. an overnight oximetry will tell you a lot, but with a diagnosed of ALS, you don't even need that.

You may have to insist and be persistent to get them to do it NOW>

Doug uses the Respironics Gel mask. it is more comfortable for him than the others. Not as many pressure points. He didn't like any of them at first, but when he began to wake up in the morning feeling better, and he wasn't inhaling water when swallowing, he learned to live with it. If you want to talk further about this, email me and i'll give you my number.

I hope this helps.

Danni
 

Timshelper

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I will never forget the first time Tim started chocking we were also in a restaraunt and then all of a sudden he was at least I thought choking I asked him if he was alright and he kept nodding to me he was ok and told me after it was a spice that had caught him in the throat. We were eating Tia food and he wanted me to experience this with him since I had never had it before it was the longest meal I have ever sat through he choked a few more times until he finally said lets leave and we have not been back since. He cannot tolerate any spices at all now and he loved pepper. If he starts to choke I just ask him if hes ok and if he nods yes we just wait till the episode is over and dont make a big deal about it. Phlegm is also a problem now too.As caregivers we just live and learn like Pals learn to adapt to their new symptoms. Its all we can do.
Kim
ALS About Loving Someone
FYI- Tim is still living on his own but figures maybe he will need me next month. Totally unblievable talk about being independant and not giving up.
 

Patsy

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Messages
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Diagnosis
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Country
CA
State
Ontario
City
Kapuskasing
Hi Dana
I still choke occasionally but I try to be very careful. I usually scare the hell out of everyone, especially my boys 10 & 13. I have a feeding tube but I occasionally drink and eat the pureed stuff. However I don't eat or drink if I am weak/tired, nervous, in public, if I am watching a funny or sad TV show or with my brother-in-law because he is always making me laugh.
When I choke, I get stridor which sounds like a high pitched inspiratory squeal. It is usually because of the food or fluids that has trickled down my throat and irritated my vocal cords and causes them to spasm shut. I have learned from experience that I have to consciously try to calm down in order to relax my vocal cords and allow it to pass; otherwise if I get upset/scared it only lasts longer and gets worse. Hard to do, mind you!
I have been using a BIPAP for 5 years because I had read research that this started early could prolong life for someone with ALS. There is a good easy to understand slide presentations website that explains the respiratory stuff for ALS. I will include that internet links in a separate message.
Patsy
 

Danni

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Hi Patsy,

Do you have any problems with pressure points on your NIV mask?

How do you manage to keep your skin healthy?

Do you have to cope with losing air thru your lips?

THanks,

Danni
 

Al

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Joined
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Messages
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Reason
PALS
Diagnosis
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Country
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State
On
City
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Hi Patsy. I've been on Bipap since late January. Couildn't live without it. If I lie dwn or even recline I start to gasp like fish out of water. It has helped me quite a bit for sure. I use an Ultra Mirage full face mask. Every once in a while I seem to get a lot of leaks. Mask farts I call them. Does the head gear need to be adjusted and how often do you do yours> I think I have lost muscle structure in my face and this may be contributing to mask leak.
Also do you seem to swallow a lot of air. Sometimes when I roll to my other side during the night I burp long and loud. Ocassionally when I get up the gas goes the other way. Have you noticed this problem or talked to others with similar experiences?
I probably breathe through my nose and mouth about 50/50%.
I'll check out your links too. Thanks. Al.
 

Patsy

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Messages
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PALS
Diagnosis
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Country
CA
State
Ontario
City
Kapuskasing
hi Danni and Al;
I will respond tomorrow as I was in the process of answering your questions but I lost everything just as I was finishing. So I will try again tomorrow because I am too frustrated with my computer right now! :oops:
Patsy
 

Patsy

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Joined
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Messages
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Reason
PALS
Diagnosis
09/1998
Country
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State
Ontario
City
Kapuskasing
Hi Danni and Al;
I had years of skin breakdown on the bridge of the nose from the Mirage nasal mask. But I had been using the the Activa Mirage nasal mask since last fall and those problems are a thing of the past. My RT (respiratory therapist) vendor knew of this problem of mine and had me try out this new product. http://www.resmed.com.au/Shared/Sta...-activa-nm-brochure-clinician-english-row.pdf
Be sure to inform them of all your respiratory equipment problems because they can help with this and can get you to try out different equipment to see what is better for you before the formal purchase. Also did you know that, through the ADP in Ontario you're entitled to get financial assistance for a new mask every 4 months, a new tubings circuit every year or 6 months (not sure); here is a a generalized description of the ADP respiratory program but people with a ALS diagnosis get a specific amount equipment/year http://www.health.gov.on.ca/english/public/program/adp/adp_mn.html . You have to get the ALS clinic or your respirologist to complete the ADP forms for you to be eligible, and make sure that when your needs for equipment change to make sure to get a revised ADP forms to have this equipment covered, if the old one doesn't cover the new equipment. The RT vendor is supposed to take care of this for you. It is always a good idea to have a double of everything, just in case of a breakdown of equipment.
Here is the chin strap that I personally prefer:
http://store.noahsarkhomecare.com/rechre.htm
Check out this site for different types of chin straps available commercially:
http://www.cpapman.com/chnstrps.html
I have to wear the chin strap, otherwise the BIPAP is useless in its intended purpose. Besides it would give me severe dry mouth and during my nursing career, I have never seen a nasal mask used without a chin strap ? However it could be something new that I am unaware of !
Al, I use a full face mask when I have a bad/flu, when my nose is congested. It leaks a lots on me too ! I don't really a like it that much because it makes my mouth so dry. I have to readjust the headgear every week when I get it washed. Sometimes you have to get the headgear replaced because it gets too out of shape with time.
With time I too have lost fat pads and muscles in my face, this can require the adjustment of the headgear or a different type of mask.
Al if you swallowing Air then You sound like the pressures on your BIPAP are too high, speak to your RT and/or your respirologist about it. This is why you are swallowing air. It has happened to me also and it was because the settings of the IPAP and/or EPAP were too high.
Al, you should try the nasal masks with a chin strap, may be you will find it more comfortable in; you never know?
Patsy
 

Al

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City
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Thanks for the info Patsy. I was going to get a replacement full face mask. Maybe I'll try the nasal one. Guess I should have kept the ones I had with my CPAP. Oh well. I'm not getting any skin breakdown as yet. When I got the Bipap they told me that ADP didn't do anything for the masks. I had to go through my private carrier and I don't know what they'll allow. Something else to check into. Even with the humidifier set high enough that there is condensation in the mask it can make my mouth terribly dry. So I think I'll experiment a bit more. Thanks for the advice.
 

Patsy

Distinguished member
Joined
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Messages
149
Reason
PALS
Diagnosis
09/1998
Country
CA
State
Ontario
City
Kapuskasing
Hi Al;
I am very glad to be of some help, whenever I can. The nurse in me still enjoys doing the sharing of information. Do you go to the Sunnybrook Clinic? If so, phone Myrna and she will have Dr Webster fill the ADP forms for you.
ADP does cover masks and then some. Phone this person to inquire; Maureen Williams (416) 327-7368 Senior program coordinator or the Program Coordinator for Medical Supplies, Ian Lowe. Ian can be reached at (416) 327-8150. They can provide you with information about the program.
I had been told that my Bard Ponsky feeding tube wouldn't be covered by the ADP program but I knew that it was like ostomy supplies and I am trying to find out and will let every person with ALS in Ontario know. This disease is expensive enough without having to pay stuff when we don't have to!
I just found the email information from the ADP respiratory supplies/equipment program that I had inquired about what was covered or not, because my RT vendor had issued us a inaccurate bill once. Bear in mind that these particulars change yearly price wise.
Here it is;


"Hello Ms. Seguin-Tremblay

Unfortunately I do not have the information you require on a disc or my hard
drive, but I can provide you with the information manually.

The following are the ventilator supplies that can be funded by the ADP. I
have included the ADP catalogue number, the ADP price, a description of the
device or supply and the quantity.


Catalogue # ADP price Quantity Description

REVND086P 2.74 48 water trap

REVND087P 1.79 12 Ventilator
swivel adapters

REVND100P 4.73 48 patient
bacterial filters

REVND101P 2.13 48 inlet
filters

REVND104P 2.88 6 multi access
adapter

REVND105P 2.88 6 multi access
adapter for oxygen addition

REVND107P 39.24 4 exhalation
mushroom valve assembly

REVND108P 6.73 360 swedish
nose/24 hr ventilation/disposable

REVND109P 32.80 4 proximal
airway pressure tubing

REVND110P 20.53 4 exhalation
drive line

REVND111P 6.73 180 swedish
nose/nocturnal ventilation only

REVND200P 72.61 4 mask or
nasal seals or pillows

REVND201P 44.17 4 headstraps

REVND202P 19.83 4 chin straps

REVND203P 17.75 2 mask swivel
connector

REVND204P 16.74 4 flextube
(for swivel connector)

REVND2051 20.48 6 corrugated
tubing/100ft roll

REVND2061 1.39 100 corrugated
tubing/precut 6 ft lengths

REVND3005 145.00 2 non-invasive circuit
(includes replacement
tubing, tubing coupler, disposable filters
and valve or
whisper swivel)


The quantity of each device refers to the amount you are allowed per year.
Therefore you are allowed 4 mask per year. Over the duration of the claim
period, you would be allowed to invoice the government for 12 masks.

I will also place our product catalogue in the mail for your use.

According to our records you have been approved for the following ventilator
supplies:REVND2009 (masks), REVND2019 (headstraps), REVND202P (chin straps),
REVND2051 (corrugated tubing/100 ft roll), REVND100P (patient bacterial
filter). As well you have a claim currently in process. This claim is to
renew your funding for your ventilator supplies. The supplies listed on the
new claim are the same as the supplies listed above with the following
change: the 100 ft roll of corrugated tubing has been replaced with
REVND3005 (non-invasive circuit). Please keep in mind that the prices listed
are the prices the ADP will pay if the client is approved at 100% of the
cost. According to our records you (she is referring to me) have been approved at 75% of the ADP
fixed price.

If you require any additional information please contact me and I will
gladly do my best to answer any of your questions."

I hope that the information can help someone.
Patsy
 

Granny

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Joined
May 18, 2005
Messages
205
Hi Al and Patsy,
Just a question: What does ADP stand for. I am not familiar with that term. We do not have coverage for tube feeding supplies, from this province or from our private insurance carrier. Interesting information. Thanks.
 

Patsy

Distinguished member
Joined
Feb 16, 2005
Messages
149
Reason
PALS
Diagnosis
09/1998
Country
CA
State
Ontario
City
Kapuskasing
ADP = Assistive Devices Program in Ontario
i found this for New Brunswick; http://www.gnb.ca/0383/ProvincialInitiatives/RehabEquipment-e.asp
"A detailed description of the sources of funding assistance and/or rehabilitation equipment loan programs for persons with disabilities in New Brunswick is available from the Premier's Council on the Status of Disabled Persons in New Brunswick: "
Patsy
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Thanks again Patsy. Boy it must have taken you a while to type that all. I'll check that out with Myrna. I do go to the Sunnybrook Clinic.
 

Patsy

Distinguished member
Joined
Feb 16, 2005
Messages
149
Reason
PALS
Diagnosis
09/1998
Country
CA
State
Ontario
City
Kapuskasing
Al;
I very good with copy and paste, plus I usually save old email messages with important information; so I don't type much if I don't have to.
Patsy
 
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