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Sammantha

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I am getting scared...... I always had a bit of a hard time breathing after a full meal, but always thought it was due to gastro stuff, now i know better...... I used to have to walk/swim etc to get short of breathe or after a lot of heavy houswork.. This morning i had half a bowl of cereal and half a cup of coffee and felt real full and decided to do some housework as the laundry is piling up. I put in and took out two loads when i started ironing, as i stood still my abdomen felt like i had just done fifty sit ups and i could barely get breathes in. I tried to let it subside but it did not and sat down and began to cry... See the thing is i am starting a full time job Dec 1. I KNOW i cannot do it but i need the money so bad........ My pulmonary tests are so recent that my disability people will take another 45 days to review this new information. I will lose my house, car if i do not bring in money next month.... My mom is buying presents for the boys because we do not have any money this year, i am very greatful... They still believe in Santa and know that we cannot give them anything. My son wanted to ask Santa for Cable! I said Santa does not work that way..... All of this was rolling around in my head, then i sucked up my tears as i knew that getting a stuffy nose would make breathing harder. I pray everyday that i will be able to do this job i will be starting it is a receptionist/medical assistant literally four blocks from my house. I just pray he does not ask me to lift heavy things or move too quickly..... I am sorry for the downer thread but i cant discuss these feelings and thoughts with my family as they already know them and when they hear me or see me cry it gets them angry and upset..........Having a hard time breathing is one of the scariest thing in the world Sam
 

BethU

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Joined
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Sam, I'm so sorry for your situation, and really worried about your breathing. I wouldn't worry about the new job right now. ... I'm sure that you will be able to handle it, at least until the disability is straightened out. I'm sure they will not expect you to be doing any lifting.

You need help right now. Is there a way to get the disability paperwork speeded up? Can you call them tomorrow and have them mark it urgent?

How about contacting Stu of the Guardian Angels here on the forum? He might be able to work a miracle for you in helping you get through the next couple of weeks.

I know how scary breathing problems are...it's total panic when you can't get any air. If you find you can't breath, get to the ER immediately.

I'm sure others will chime in with suggestions ... we all love you, and are really concerned for your situation.

Hang tight.
 

crystalkk

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Learn about ALS
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pennsylvania
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Sam,

I am sorry that you are going through this, and then have to worry about finances as well.
I noticed when I bend over from the waste down it takes my breath away briefly.
If you were doing laundry most likey you were in this bent over position. In a previous post
you stated the gp increased your klopion how much are you taking, I believe this can relax your breathing
muscles as well.
 

AHands

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Dec 10, 2007
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206
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PALS
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US
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NC
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Carrboro
i hate the breathing problems, but don't despair, my experience has been that they plateau--its not a steady decline, you can stabilize. there are some simple breathing exercises that have helped me. if you're interested, ask, and i'll post.

In April, my FVC measured 67% (was 100% in Nov). I wanted to blame the heavy pollen, but in May the pollen cleared, yet my breathing remained shallow. By then, I was up to 900mg/day Lithium and my blood finally hit the target level, but due to continued shortness of breath I quit Li.

I now use the biPap at night--it helps a LOT. I continue to atrophy in the limbs. Walking, standing and climbing stairs is limited by back and neck weakness, but I can still ride my recumbent bicycle--its done wonders for my mobility and independence.

The breathing difficulties were preceded by cramping in the abdomen whenever I coughed or sneezed. Breathing may have stabilized once I stopped Lithium--hard to say for sure.
 

kearlms

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Nov 9, 2008
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PALS
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US
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ID
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Rexburg
Wife needs breathing tips

My wife was just diagnosed about 2 weeks ago with ASL and her breathing went down hill real fast in the past 3 weeks. Two days ago we had to go into the hospital and her breathing was bad enough they had to do a tracheotomy. She needs to strengthen her lungs and diaphragm now. You said you had some things that may help. Please send me some tips so she can breath well enough to enjoy life with the kids.
 

hopingforcure

Very helpful member
Joined
Feb 14, 2008
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09/2007
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USA
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Any
Sam,
You should be able to get disability immediately, and you should also get a retroactive sum. Anything we can do to help you? I am just heartbroken that you are going through this financial situation with the health problems to boot. Sam I really think although you are a private person, the community would help if they were aware of your situation, what if someone from the site would contact them? what cand I or we do to help, I know we all care about you, and your family, and this should not be happening, of all people you should not even have to think about starting a new job. Sam I remember when you first joined the sight, and you had already been through the ringer, and now all this... I want to help... what can I do?
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Hi, Kearlms ... I'm so sorry about your wife's diagnosed. I'm glad you joined this forum as I'm sure you will hear from people who will be able to give you some insight.

Your neurologist should be able to give you some direction on this. Has he or she mentioned breathing augmentation devices, such as BiPAP ? It sounds to me like this is probably the next step. This is a device the patient wears either during sleep or all the time that keeps the lungs functioning as the internal muscles get weaker.

Let us know more about your wife's situation. We have a lot of caregivers on this forum who can help.

Take care.
 

AHands

Distinguished member
Joined
Dec 10, 2007
Messages
206
Reason
PALS
Country
US
State
NC
City
Carrboro
My wife was just diagnosed about 2 weeks ago with ASL and her breathing went down hill real fast in the past 3 weeks. Two days ago we had to go into the hospital and her breathing was bad enough they had to do a tracheotomy. She needs to strengthen her lungs and diaphragm now. You said you had some things that may help. Please send me some tips so she can breath well enough to enjoy life with the kids.

I apologize for the delay, I just got back from out of town. Here https://www.alsforums.com/forum/showthread.php?t=5168 is the breathing exercises that worked for me. I hope they work for your wife too. The BiPap has done wonders too. Lately I feel like drinking a bottle of cold water when I'm short of breath helps too.

You said she had a tracheotomy, Is she on a ventilator?
 
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