>Max don't forget to add the new rule to that hot key
actually I keep it in a text file of stuff. here it is, needs a cleanup
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having to be 'washed and shampooed' in the pool by Sandy :-(
Default Re: I can't breath
Max, the suction machine is similar to the ones used at the dentists office. It has a wand that you put in your mouth and move around to suck out fluids. Its fairly long so you can get it to the back of your mouth. It'll pick up some pretty thick stuff. Simply turn it on and move the wand around. Has a small hole in the side of the wand you put your finger over so it'll suck, a safety feature in case you have it adjusted too high and connect with something you want to keep, move your finger and the wand loses its suction. Kind of hard to explain but when you see it in action you'll understand. Call your pcp at the va and they should order one for you. Took about a week to get mine
>Call your pcp at the va and they should order one for you. Took about a week to get mine
thanks, Dalvin!
Default Re: I can't breath
Yes, it's very handy. Imo, they should always be prescribed together. Spitting is a lot of work, and with the suction machine, you can get it farther back and suck out of your throat.
Default Re: I can't breath
My husband has cough assist and suction. Cough assist is supposed to get air into the deep recesses of the lungs where mucous collects, and break it up. The suction machine is a Godsend - he sucks away excess saliva and mucous all the time, it is such a problem (although better since getting Botox every 3 months). Not sure how either machine would actually help with breathing (his Trilogy helps with that).
thank you all -- I've just passed the conversation to Sandy ...
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Well -- Several of us have tried to share our experience with you and your fears.
The consensus seems to be that you need to resolve your issues with medical professionals and/or do not have ALS.
We do empathize with your fears, but there is no more we can help you with at this time.
This note is not to deter you from your investigations, but just not on this forum.
You asked, we answered, so please move on.
If you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro,
note: most are NOT ALS/MND (Motor Neuron Disease) experienced!
Anxiety can be a real problem that can endanger your physical health. Make sure you tell your medical practioner what you are feeling as well as how you are feeling.
No need to reply. Goodbye and best regards.
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Max
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...
.
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Stacked breathing, also known as breath stacking, is a specialized type of exercise that typically caters to people who have respiratory difficulties, but also benefits athletes and virtually anyone looking to improve their lung capacity and breath control during exercise. Practiced regularly, breath stacking produces numerous benefits for athletes.
Technique
To perform stacked breathing exercises, simply sit on the edge of a chair or bed, keeping your back straight and shoulders relaxed. Take a small breath, focusing on filling the base of your lungs, and hold for a second. Without exhaling, take in a larger breath and hold for one more second. Finally, take a big breath that fills your lungs as much as possible and hold for three to 10 seconds. Purse your lips and exhale slowly.
In Your Regimen
For improved breathing during your workout, perform stacked breathing techniques up to four times daily. Ben Peterson, author of "Triphasic Training: A Systematic Approach to Elite Speed and Explosive Strength Performance," recommends following your regular workout with five to 10 minutes of breathing exercises such as stacked breathing and deep belly breathing to improve exercise recovery.
Core Benefits
The process of stacked breathing exercises the muscles of the chest and stretches out the lungs, which helps improve lung capacity and increase oxygen intake. Breath stacking also results in improved airway clearance.
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Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ...
Here are some first considerations that may help:
#1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.
#2 We are not doctors or diagnosticians, but people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading/replying to the anxiety-ridden can be very tiring.
#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro,
note: most are NOT ALS/MND (Motor Neuron Disease) experienced!
#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.
#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.
#6 ALS is about failing, not feeling, so forget the "feeling" symptoms
#7 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.
#8 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.
#9 Many of us cough/gag/choke and/or can no longer speak. It is difficult to have anxious people constantly chasing this disease, when we can't escape it. There seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?
#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum --
it is a self-fueling fire. Try to avoid using google and/or this forum if you can --
if you cannot stay away and off this forum it should tell you something important!
Lastly, if you are still interested, go to alsa dot org or mda dot org ...
We sincerely hope you do not need to be here! But find out first. If you do need to be here let me say "Welcome, sorry you are here!"
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Max - Monday, August 18, 2014 12:03:01 PM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...
.
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#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
ALS is about living, not dying!
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like all the others, sorry to meet you here but welcome!
The next weeks, months will be an emotional roller coaster. Try to go with the flow, expect fear, anger, bitterness, and a new awareness of life. I have found that being active here on these forums has helped me in way I cannot explain, but you will see.
before trying miracle cures, etc., ask here, go to alsuntangled dot com.
Lastly, anxiety can be debilitating so beware.
Lastly, lastly DON'T FALL, take vitamins, keep your calorie intake up, and stay away from sick people, especially w/ respiratory problems.
Kind regards and warm welcome,
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> I do know it is healthier to be thankful for what still works than to resent what doesn't (easier said than done
)
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Fruit smoothie 350 cals 2x / day = 700 cals
chocolate milk/banana/2 tbls peanut butter 700 cals 2x /day = 1400
gazpacho 150 cals 2x /day = 300 cals plus the fiber to keep the plumbing going
total ~ 2,400 cals/day, have lost 4 lbs since not being able to eat Feb/2014
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>I've learned is that no two ALS cases are alike. Here is a question anyway. Do Bulbar victims (pick one) always/sometimes/rarely/never or eventually graduate to muscular atrophy of the limbs?
I think your 1st point is right, no way to guess. I do know it is healthier to be thankful for what still works than to resent what doesn't (easier said than done
) -- there is one fellow on here today in his 8th year. Me, I'm hoping to make it to one more season, as Michigan has blown it to hell again this year - they are playing worse than I'm talking :-(
>Smoothies that have lots of protein and calories can be a great way to get what you need into you without much effort.
Fruit smoothie 350 cals 2x / day = 700 cals
chocolate milk/banana/2 tbls peanut butter 700 cals 2x /day = 1400
gazpacho 150 cals 2x /day = 300 cals plus the fiber to keep the plumbing going
I've lost 4 lbs since I had to give up eating last Feb. -- btw, if you wouldn't mind, have a liverwurst & jack cheese on rye for me when you have a chance (just say "this is for Max" before the first bite)
also remember the rules:
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#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
#4 stay warm
#5 take vitamins
ALS is about living, not dying!
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ok well, we take what we get and be glad for what we have
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If you have not yet, go to youtube and search "ALS ABC" and watch all 3. I sent those to friends and family, too.
like all the others, sorry to meet you here but welcome!
The next weeks, months will be an emotional roller coaster. Try to go with the flow, expect
fear, anger, bitterness, and a new awareness of life. I have found that being active here on
these forums has helped me in way I cannot explain, but you will see.
before trying miracle cures, etc., ask here, go to alsuntangled dot com.
Lastly, anxiety can be debilitating so beware.
Max
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from Greg:
OK, to attach files (if your profile allows):
Below the Quick Reply box, click Go Advanced.
Scroll down below the Reply to Thread window, click Manage Attachments.
In the Manage Attachments window, select one of the Choose File buttons, browse to your file(s), select it/them.
Back in the Manage Attachments window, click Upload to pull your file in. Now scroll down to the bottom and click Close this Window.
Put your text into the Message: box and hit Submit Reply.
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you might consider donating it for the tax benefit ...
