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Old 02-13-2008, 02:46 PM   #31
Cruella 66
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Yes, I understand totally. My sister and I both have seen our doctors and had to take some meds for awhile. I've come to terms and accepted it.
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Old 02-13-2008, 04:04 PM   #32
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First I am no expert in ALS.

Please make sure your love ones are getting PT/OT/Speech. They will help with any assistive devices needed. Look at the yahoo groups. I am involved with them for Parkinsions and as an RN I can tell you these people are lightyears ahead of most MD's. That is not a rip on MDs but an observation. There is also an Nih.gov website for anyone interested in being a participant in a clinincal trial.

Goog luck and hugs to all!!
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Old 02-13-2008, 04:17 PM   #33
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Quote:
Originally Posted by Fiver View Post
Howdy Folks,

I'm 34, married, and have a 6yr old son. I'm going to be trying Lithium in the next month. I'm staying positive, living life, and trusting God.
I will be thinking of you.

Did you ever see this site?


http://www.focusonals.com/
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Old 02-13-2008, 05:09 PM   #34
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No, I hadn't heard of that web site; I try to keep my head in the sand and not read too much. I know what's coming but I am living for the day and not looking too forward. I'll check that sight out. My parents have been in contact with ALS society of MI and MDA. The MDA is assisting financially with her voice box computer. As an aside, I too am an RN. Hugs and thanks to all, Cindy
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Old 02-15-2008, 11:52 AM   #35
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Hi everyone,
I, too, can't believe I just found this part of Dis. I'm here all the time, lurking, but this is the first time I have been to this section.
Anyway, my prayers go out to all of you. My father-in-law has been suffering with this terrible disease for a couple of years now. In fact, we are now realizing that many of the problems he has had over the past several years or so have probably been caused by the beginnings of this disease. He is 69 years old. He has had back, neck and leg pain and weakness for years, but he was just finally diagnosed with ALS a couple of years ago. He is now totally dependent on my mother-in-law to do everything. He can move from a chair to his hospital bed with help, but cannot walk at all anymore. He can't feed himself very well, but he still tries. He is having more and more trouble breathing and swallowing, and he now has to eat liquids (drinks a lot of milk) and smashed up foods. He sleeps with a breathing machine and is on oxygen all day. They say that people with ALS shouldn't be on oxygen all the time because they cannot expel the carbon dioxide, but he's to the point where his doctors told us to let him do whatever he wants. He does not want a breathing or feeding tube.
This disease is so hard on the patients, but it is also so hard for the caretakers. My DH's mom is losing weight and gets very little sleep.
Thank you for bringing this thread to life. It really helps to see that we are not alone in this disease, but it is also very scary to hear about more and more people getting ALS.
Good luck to everyone, and again, my prayers are with you all!

Jackie
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Old 02-16-2008, 01:03 PM   #36
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Chickie: I'm sorry to hear about your father in law.
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Old 02-17-2008, 05:22 AM   #37
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I am so saddened reading this... you forget there are other horrific diseases out there when you are battling one of your own..

Hugs to you all.. I am so sorry. All I can say is seize the day and live the best you can...until you cannot anymore.
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Old 02-18-2008, 03:54 PM   #38
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haven't been back on this thread in a while. I am sorry to see new people dealing with a loved one that has ALS. Fiver --- I am so sorry to hear you are battling the disease yourself

We had a scare about a month ago with my father. His wife was feeding him, she cut up a banana and fed it to him. He started choking badly on it, so badly his wife told me later that she was scared he was going to die.
He had an appt later that afternoon and it was found that he is terribly aspirating when it eats.
The doctor told him that he recommends a feeding tube or my dad has a good chance of choking to death and probably soon. My dad decided to go ahead with the feeding tube.
It hasn't quite been a month since the feeding tube. It has been hard on him.

He now can not walk without assistance, even a short distance. He can put some weight on his left leg, but his right one is starting to drop more and more.

My dad's speech is getting more and more slurred. He does have a computer voice machine

He goes back to the ALS clinic next month.

I was wondering if anyone has any ideas where to look for a handicap accessible van? They are so expensive and my dad and his wife really can not afford one. I was wondering if anyone knows of an organization that helps with the cost? We are in Minnesota if that matters. THANKS!
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Old 02-18-2008, 07:08 PM   #39
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Try the MDA, they are helping my mom get her voice machine but she doesn't have it yet. Also, if there is an ALS Association in your area they may be able to help or give you ideas. My mom is getting weaker by the day, has had choking episodes but doesn't want a feeding tube. Most days she just doesn't eat. Best wishes, Cindy
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Old 02-18-2008, 07:42 PM   #40
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Quote:
Originally Posted by Cruella 66 View Post
Try the MDA, they are helping my mom get her voice machine but she doesn't have it yet. Also, if there is an ALS Association in your area they may be able to help or give you ideas. My mom is getting weaker by the day, has had choking episodes but doesn't want a feeding tube. Most days she just doesn't eat. Best wishes, Cindy
Thanks! We will try those places.

My dad was just like your mom in he did not want a feeding tube. I think he got really scared when he starting choking and he didn't want to die that way. My dad's wife said she saw total fear in my dad's eyes when he was choking. He was very scared.

Before the feeding tube my dad was not eating very much either. Maybe little things here and there, which was causing him to lose weight fairly quickly and that isn't good either with an ALS.

This disease is just terrible on so many levels.
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Old 02-27-2008, 01:27 PM   #41
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I haven't been back to this thread in awhile either. My nephew cannot move anymore. He can only eat soft food and cannot speak. He does not want a feeding or breathing tube either. His parents and wife are complying with his wishes. I feel like this may be his last year. to all coping with this horrible disease.
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Old 02-27-2008, 03:17 PM   #42
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I am so sorry to hear this about your father. I will keep you all in my prayers. Please feel free to come here and talk. Talking about what you are dealing with really does help.
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Old 03-03-2008, 04:10 PM   #43
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To the original Poster,

My prayers are with you and your Father.

My husband died of ALS in 2005. He was 45 years old. He had a bulbar progression (starting in his voice, throat).

The one thing about this disease is that some seem to have a slower course than others. There is a man named Steven Bishop who has been diagnosed more than 6 years ago and he is progressing very slowly. you can google his name and "ALS" to find his website.

We got involved in our local MDA office, and also into a clinical trial. I would suggest looking into things like that. The MDA is especially good at helping a family prepare for the kind of care an ALS patient might need.


-Marti
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Old 03-26-2008, 12:00 AM   #44
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I am very sorry to hear about personal and family diagnoses and struggles. I personally do not know anyone with ALS but a friend's mother recently died of ALS. As a result a friend of mine, his wife and 2 of his colleagues made a short documentary about ALS and submitted it to the cannes film festival. They won! They then spent a few months touring Canada filming documentary about fundraising and will submit it for again this year. I think it is a great thing they are doing and wanted to share it with you all. they spent a lot of their own money and time to do this great deed for ALS!

http://www.alsacrosscanada.com/
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Old 03-26-2008, 12:40 AM   #45
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I am very sorry to hear about personal and family diagnoses and struggles. I personally do not know anyone with ALS but a friend's mother recently died of ALS. As a result a friend of mine, his wife and 2 of his colleagues made a short documentary about ALS and submitted it to the cannes film festival. They won! They then spent a few months touring Canada filming documentary about fundraising and will submit it for again this year. I think it is a great thing they are doing and wanted to share it with you all. they spent a lot of their own money and time to do this great deed for ALS!

http://www.alsacrosscanada.com/

Cool, disneyfreak. Thank You!
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