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lakelover

Active member
Joined
Sep 5, 2011
Messages
54
Reason
CALS
Diagnosis
08/2011
Country
US
State
NC
City
Greensboro
Ralph's progression started in his left arm. He can still walk, very limited use of his hands and arms. still able to swallow and speak although his voice is getting weaker by the day. His breathing is what is going so fast. So fast that in 4 months his FVC went from 84% to 52% and his MIP went from 76% to 40%. He wakes up in the middle of the night unable to breathe so now I get very little sleep. The doctor just wrote us a prescription for a BiPap three weeks ago but his breathing is declining on a daily basis. He can barely say two words without taking a breath, barely able to cough, unable to blow his nose. He is having a difficult time using the BiPap because of the settings so we had to go back to the ALS Clinic today to have them reset. I am having a very difficult time dealing with this. Here I am waiting on him to lose his ability to walk, to swallow and all of the use of his hands and arms and just never thought his breathing would be the next to go. Three weeks ago he was still working but was extremely exhausted at the end of the day. Has not worked since Friday before Christmas. Christmas Eve I spent the night walking the floor stressed out because he was having difficulty in breathing. He has tried to go back to work twice but lasted only an hour because he was so exhausted. How is this happening? This is so scary. I hate this disease!

Wanda
 
Everyone's progression is different. Hmmm...I have and you must have heard this before. I'm so sorry. When my husband started having difficulty breathing, we started him on low doses of morphine which really helped him. This was in addition to his BiPAP which he used at night and when he was napping in the afternoon. We were giving him 1 ml every two or three hours and that worked wonderfully for him. He never gasped for breath but rather felt "air hunger" so the morphine was great. It wasn't enough to cause too much drowsiness or respiratory suppression. Working is probably out of the question now. It's hard to say but anything he does that causes fatigue should be avoided.
I went to a bereavement group after Bob passed and it turned out he was the only one out of 7 or 8 that had lost almost all of his mobility when he passed. Others were still relatively mobile. His started with his left hand. Progression seemed too rapid after diagnosis but he had symptoms for about 2 years or more before that. Sorry Wanda, for you, for Ralph and your family and friends. This disease is relentless. Yasmin.
 
I so empathize with you. My pals lost all use of every limb and lay in the bed for over a year. It was the breathing and swallowing that caused her death. Thank goodness that she did not want to prolong it with artificial means. She was 69 and tired of it all. My little sweetheart fought the good fight against ALS as gallantly as anyone could have. She never complained and was a rock when I was paper machete. I do not think that you will have long to worry,since it seems to be advancing. I had from July of 08 to Aug. of 12 to watch my love go downhill. It is a heartbreaking disease for those with it and their caregiver. You stand to go through the trial of your life. Just be as kind as you can to him and when it seems that you can not take it anymore, step back and thank God for the things you do have. Remember-This Too Shall Pass!
 
Wanda,

I am sorry to hear of Ralph's progression. We have a similar story. My Dad's ALS started in his arms...specifically his right arm. He has been completely unable to use his arms or hands for a while. Though he is still mobile (barely as he tires so quickly and is out of breath) and can eat/swallow, his breathing is becoming so compromised so fast. Once his breathing started to become affected, it just seemed to spiral. He stared using the bipap only a couple of months ago for an hour, twice a day. He is now on the bipap the majority of the day, to include through the night. It is so hard to watch him unable to catch his breath and trying so hard to take a deep breath, which seems impossible. He can't cough or sneeze either. He gets completely winded just walking to the bathroom, which is right next to his recliner he hangs out in.

It is a very tough disease to watch. Some days I accept that it is what it is and thank God for all of the blessings, other days I am so angry at the disease and the situation in general. This is a journey and a tough one. Hugs to you!

Allison
 
Thank You guys for your words of encouragement. Some days I am so angry and other days I feel so helpless. This is such a roller coaster ride. I so wish I could get off this ride but unfortunately there is not a stop button to push and it seems to be picking up speed.

My thoughts and prayers are for everyone having to watch someone they love fight this horrendous disease and having to stand by watching, not able to do anything but love them and make every moment you have count.
 
Lakeover,
Do you have a suction machine? Get the respiratory therapist to get a cough assist machine. Micheal uses it all the time.
 
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