Dad has ALS

[Cruella 66]

We have our walk October 27th. When I was up at my parent's over the summer I contacted family members we haven't talked to in DECADES. My grandfather died of ALS in 1985 and I was curious to find out if anyone before or since him had had the disease. They were all surprised to hear my mom had it and my grandfather has been the only other person; they'd never even heard of the disease until he was diagnosed. And longevity runs on that side of the family...if you can avoid car accidents. It's so insane...to go for how long...who knows...then to all of a sudden have two first degree relatives, father and daughter, develope the disease. Cindy

 

[LuvOrlando]

Sorry Artoo, I'm wishing you

 

[hentob]

And who knows--there is a lot of ALS research being done and a cure may come at any time!!

LITHIUM!!! Yes--the drug that is used in bipolar disorder is now slowing ALS

 

[LuvOrlando]

LITHIUM!!! Yes--the drug that is used in bipolar disorder is now slowing ALS

Really, I have some friends whose parents are struggling with ALS and will be sure to spread the info. Thank you for posting

 

[hentob]

Really, I have some friends whose parents are struggling with ALS and will be sure to spread the info. Thank you for posting

http://www.news-medical.net/?id=34906

 

[Cruella 66]

Wow, that's incredible. I sent this onto my family! Thank you for sharing. Cindy

 

[Fiver]

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've been having symptoms for a year. I was diagnosed in December. I walk with a cane(very sloooooooow), arm/hand weakness more on right side(can't write), and lots of spasticity. I feel as though I'm progressing not too quickly.

~Mel

 

[SillyGirl30]

I just found this thread today, and I'm glad I did. Sometimes you feel all alone when someone you love has ALS. My Dad (53) has ALS. He was diagnosed a little over 2 years ago, but had showed signs of it about a year before that. He has the Famila kind. My grandfather and a great uncle also had it, but out my Dad's 27 cousins that could be affected he is the only one. My dad's ALS affected his foot first and now he wears a brace. He has also has a lost of use of his fingers on his right hand. He also loses his balance and falls a good bit. He keeps going with the a positive attitude and a frustration mixed in.

 

[Cruella 66]

SillyGirl30; My grandfather also died of ALS in 1985 and he was about 53 at the time and now my Mom has it and she's 58. We have a small family on that side and my grandfather was the first for anyone to know of having it. They were VERY surprised to hear my mom has it now. She's pretty advanced. Just keep the faith and live your life fully. Wishes, Cindy

 

[SillyGirl30]

Cruella 66 - I'm sorry to hear about your mother. Coping with ALS is hard. I actually went to counseling when my dad was first diagnosed. It turns out that I was grieving.

 

[Cruella 66]

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.

 

[DisOrBust]

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!!

 

[hentob]

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/

 

[Cruella 66]

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

 

[chickie]

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

 

[SillyGirl30]

Chickie: I'm sorry to hear about your father in law.

 

[Mackey Mouse]

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.

 

[jacksonsmom]

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!

 

[Cruella 66]

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

 

[jacksonsmom]

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.