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Zina Perry

Jan 5, 2008
Loved one DX

I am new to the group. My husband, Mike was diagnosed in December of 2007. The only symptoms that he has are the respiratory. He takes 4 breaths in 5 seconds. They told us he should be thinking about a trach soon. Has anyone else contacted ALS in the respiratory first? The doctor told me he did not think he would live long enough to develop any loss of his arms and legs. He has lost about 25 pounds and we are giving him Resource 2.0 and he is also taking Rilutek. I think the Rilutek has made him worse, but he hasn't been on it for a month. Also, he has hallucinations. It is usually people that he sees, but it is in the daytime and at night. I am planning on retiring so I can be with him because I do not think it is safe to leave him. I am planning on fighting this disease as well as the carcinoid cancer that he has. He is a fighter, but he is really going down fast. Any suggestions?

God Bless,
Zina Akin Perry
Rusk, Texas:(
Zina, I am so sorry for you, and your husband. We get quite a few new members on this forum, almost on a daily basis. That's just to show you, how bad and common this killer disease is. I cannot believe this! Okay, my son was diagnosed'ed on 3-29-06, and passed on 6-03-07, and during that time I have found out so much about this damn disease, and there are so many people with this disease! I never realized there were so many people with Als, and dying from it until I joined this forum.

I will keep you, and your husband in my prayers. I have one question, though. Is Rusk in East Texas?

Hi Zina -

I have heard of respiratory onset - but am told it is the rarest form of onset. I read on a forum about a guy who used a ventilator and was able to mow his lawn. Wore the ventilator in a backpack. His was respiratory onset, aslo.

I am sure the halucinations are a respiratory problem - build-up of CO2. If you are planning to vent call the doctor about this symptom - it is quite serious. Sounds like you have to make your decisions soon. If no vent - please get a hospice involved as soon as possible - for your sake and for his. This sounds like youneed to act quickly.

A forum member has a website about his experiences, including being on a vent - very inspirational - You can also search his posts on this website.

Welcome to this forum, although I am sorry about the reason. You will find plenty of support and concrete help from the members - I sure have.

Good luck - Beth
Hello Zina and welcome to the forum. I hope your Dad is able to get some help soon. Please write back and let us know how things wrok out. Cindy
Thank you so much for your reply. Sorry to hear about the loss of your son. Yes, Rusk is in East Texas. I am getting Mike ready to go to the doctor today. He had hallucinations Friday night and all day Saturdayand kept me up all of Saturday night. He slept most of Sunday morning and seemed to be better Sunday afternoon. I believe he is fighting sleep! He is congested so I am caring him in today and maybe they can give him something for the aniexty. He used to sleep all day and all night, but I think he is afraid he won't wake up if he goes to sleep. Again, thank you for your concern. Got to go and get him out of the shower. Take care and have a blessed week.

God Bless,
Zina Akin Perry
Rusk, Texas
Hello Zina and welcome to the forum. I have had periods of weeks when I would get maybe one hour of sleep a night. After speaking with my doctor and getting on a Bi-Pap machine, he recommended I increase my pain meds so my body could get the rest it needed. Without the Bi-pap I cannot get a really good nights sleep.

If you do not go to a vent soon, at least try to get him on a Bi-pap, it might help. When they do a lung function test they will know which is best for him, hopefully.

It sounds like something needs to be done quickly.

God Bless
Capt AL
Capt. Al

Thank you for your reply. I carried Mike to the doctor yesterday and his blood gases showed his Co2 off the chart. He has a Bi-Pap, but they said his only hope would be to stay on it for 24 hours a day. The doctor said this was what was causing the hallicunations and that he was close to going to sleep and not waking up. His white count was over 30,000, so they gave him IV antibotics and sent him home with a prescription of prednisone and leviquin. I don't know how much longer he has but he has been sinking fast. He was working in the yard and doing everything in June and suddenly became short of breath. He mostly sits and watches a little television and talks a little, but is becoming less respondent each day. I have taken a leave of absence from my job to be with him. I pray for people who have to deal with this awful disease and am thankful that Mike can still walk and use his arms. God be with each of you.

God bless,
Zina Akin Perry
Rusk, Texas
Hi Zina,I am so sorry to hear about your husband.This disease is just such a monster.My husband has had als for 4+ yrs now and also the worst of symptoms are of the resperatory nature.He wears the bi pap at night and the oxygen a lot during the day as well as the bi pap...We were told 14 months ago by the als clinic neuro and also another lung specialist that he had from 2wks-month left.!He also tried rulitek and said it made him feel worse so he stopped taking it.He still has the use of his arms and legs but cannot walk very far without being so out of breath.He has lost 60 lbs over the course of the last 4 years and is becoming very frail and weak.He has chosen not to vent so i cannot help you with that but i just wanted to let you know that the doctors sometimes dont know who they are dealing with when they put a time frame on this illness.!God Bless and prayers your way.......Gina
Thank you for your reply. I feel better after reading it. Mike has chose not to use the vent and the doctor said he would not benefit from it because of the CO2 levels. We are going to take one day at a time and whatever he wants to eat , I cook, and if chooses not to eat I give him Resource 2.0 through his feeding tube. He is beginning to lose muscle. He gets about 3000 calories a day, but the doctor said the way he breathes he probably is burning alot of calories. I know that his heart is in danger also! He overcame carcinoid cancer surgeries in 2004 and we had our doubts then so I will not give up. We have 3 granddaughters that love their Pop so much and they keep him going and give him inspiration when no one else can. I have taken family medical leave but I think I will go ahead and retire. Again, thank you for sharing with me and giving me hope.

God Bless,

Zina Akin Perry
Rusk, Texas
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