Dad has ALS - Page 2 - The DIS Discussion Forums

Cruella 66 · 08-06-2007, 06:45 PM

Wow...can't believe I found this thread. My mom was just diagnosed with ALS in April. She's determined to be as independent for as long as possible but is having speech difficulty, swallowing difficulty and is getting weaker and more tired by the day per my sister. It's very difficult too as our grandfather also died of the disease in 1985 when he was 54. My mom is currently 57. I feel like I'm staring my future in the face as it's probably FALS and I, my siblings and children have a 50/50 chance of getting it. I'm going to hook up with the local ALS support group when I finish with our Disney trip. I'm also taking Prozac, trying to stay positive and accepting that my future is up to a higher power. My heart really goes out to the young man, 35, with the disease. Cindy

bethifoody · 08-06-2007, 06:53 PM

Hi. I'm very sorry to hear of all your loved ones' diagnoses. My mom was diagnosed with ALS in April of this year - a very scary fact when you consider that her father died of it over 20 years ago. She's doing ok so far, I guess, although I can see changes every time I see her. She's still walking, driving & going to work. Her speech has been slurred for many months now, and she's beginning to have trouble walking. She is being seen at a local ALS clinic through the Univ. of Michigan, so I've no doubt that she's receiving the best care possible.

Someone mentioned the Walk to d'Feet ALS; I'm walking this year in a local Walk (Howell), and my sister will be walking in the Walk in her area. I feel like it's the least I can do.

Sending

to everyone. I want to thank my sister, Cruella66, for sending me the link to this thread.

Thanks for posting, everyone. It's good to know we're not alone!

Beth in MI,
CR, 8/18-23

jacksonsmom · 08-07-2007, 08:13 AM

Wow I am surprised to have found this thread. I never come on this board, didn't really know about it.

First I am very sorry to hear all of those that are dealing with ALS. It really is a nasty disease. I only pray one day someone finds a cure!

My dad currently is battling ALS. He started having some muscle weakness in his right hand in August 2005. By January of 2006 the doctors diagnosed him with ALS

My dad is only 50 yrs old. Currently he is doing "OK". He just recently took a trip of a lifetime to Alaska. He really had the time of his life there. I am so happy for him that he was able to go there.

My dad can still walk but recently he is expereincing weakness in his right leg. His right hand/arm is pretty much useless. His left one has lost a lot of muscle too. In fact my DH was just over at his house this weekend changing the door handles because my dad can not turn a doorknob anymore. He now has doorhandles that you push down and then push the door out (kind of hard to explain). Since the beginning he has lost a total of around 40 pounds. He is very thin. His speech is very affected, he slurs heavily. He recently went to the Courage Center here and he will be getting a machine that he can talk through and will allows others to hopefully understand him better.
He has a hard time swallowing and coughs/chokes when he eats.

It is a VERY frustrating disease for all those invovled. My dad can not bathe himself or even help himself when he uses the tiolet

I will say although the future is bleak my dad is living life as much as he can. He CAN still walk and although it is a struggle at times, he CAN still talk! We don't know how long he will be able to walk on his own but we are thankful for whatever we get.

One thing I want to say is ALS is a HORRIBLE disease. As family supporters and caregivers we HAVE to support the person with the disease wishes! My dad will NOT go on a breathing tube. Of course knowing that I know his life may not last as long then if he did have a breathing tube

But those around him have to support HIS decision. We are not the ones living with the diease.
My dad's doctors have recommended a feeding tube but again my dad just is not ready for that. He may never be ready. Again us supporters have to support his decision, no matter how hard it may be.

It has been about 1 1/2 since the official diagnosis, 2 years since the first symptom. My dad has progressed quite a bit since then. I don't know what the next year or so will bring but one thing we learned about this disease is just one day at a time and love one another.

Again I am sorry to hear those that are battling this disease.

Cruella 66 · 08-07-2007, 05:45 PM

I am sorry to hear of everyone's encounter with ALS but I totally agree that it is the person suffering with disease that needs to call the shots and the loved ones that need to support his/her decisions; regardless of their own personal beliefs. I, unfortunately, am in Virginia and the rest of my family in Michigan. I don't see the day to day changes, falls, swelling, lack of eating, etc. Being a RN I can tell everyone the "right thing" to do according to my training but ultimately, it's up to my parents as to what they do. I can't get them to do it any more than if I were there, you know? So, honor them, put your faith in a higher power, and try to smile. Hugs to all, Cindy

catsrule · 09-09-2007, 01:25 PM

Wow. I haven't been back to this thread in awhile.

This is a horrible, fatal disease and I wish it would get more attention from the media. The walk to d'feet was here today. I hope it did well. My nephew, Michael, continues to struggle each day from this disease. As I have said, no one in our families has ever had it that we are aware of so it was quite a shock for us.

Cruella 66 · 09-09-2007, 06:41 PM

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 · 09-10-2007, 10:59 AM

Sorry Artoo, I'm wishing you

hentob · 02-12-2008, 05:22 AM

Quote:

Originally Posted by barb/nl

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 · 02-12-2008, 09:59 AM

Quote:

Originally Posted by hentob

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 · 02-12-2008, 04:16 PM

Quote:

Originally Posted by LuvOrlando

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 · 02-12-2008, 04:35 PM

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

Cindy

Fiver · 02-12-2008, 08:15 PM

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 · 02-12-2008, 11:25 PM

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 · 02-13-2008, 05:36 AM

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 · 02-13-2008, 01:14 PM

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.

08-06-2007, 06:53 PM	#17
bethifoody Mouseketeer Join Date: Feb 2007 Location: Michigan Posts: 227	Sadly, joining in the conversation... Hi. I'm very sorry to hear of all your loved ones' diagnoses. My mom was diagnosed with ALS in April of this year - a very scary fact when you consider that her father died of it over 20 years ago. She's doing ok so far, I guess, although I can see changes every time I see her. She's still walking, driving & going to work. Her speech has been slurred for many months now, and she's beginning to have trouble walking. She is being seen at a local ALS clinic through the Univ. of Michigan, so I've no doubt that she's receiving the best care possible. Someone mentioned the Walk to d'Feet ALS; I'm walking this year in a local Walk (Howell), and my sister will be walking in the Walk in her area. I feel like it's the least I can do. Sending to everyone. I want to thank my sister, Cruella66, for sending me the link to this thread. Thanks for posting, everyone. It's good to know we're not alone! Beth in MI, CR, 8/18-23

09-09-2007, 01:25 PM	#20
catsrule Mary Jo Join Date: Jan 2001 Location: Cincinnati, Ohio Posts: 29,347	Wow. I haven't been back to this thread in awhile. This is a horrible, fatal disease and I wish it would get more attention from the media. The walk to d'feet was here today. I hope it did well. My nephew, Michael, continues to struggle each day from this disease. As I have said, no one in our families has ever had it that we are aware of so it was quite a shock for us. __________________ WDW vacation pictures MAY 2011 For Dear Nephew Michael Mary Jo

02-12-2008, 08:15 PM	#27
Fiver Mouseketeer Join Date: Jul 2000 Location: The Sticks,GA Posts: 150	I Have ALS 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 __________________ Former Aviator of If You Had Wings

02-12-2008, 11:25 PM	#28
SillyGirl30 Earning My Ears Join Date: Oct 2007 Location: Montgomery, AL Posts: 34	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. __________________ Me DH Sept. 2007 Carribean Beach 4 other times with family off-site.

02-13-2008, 01:14 PM	#30
SillyGirl30 Earning My Ears Join Date: Oct 2007 Location: Montgomery, AL Posts: 34	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. __________________ Me DH Sept. 2007 Carribean Beach 4 other times with family off-site.

08-06-2007, 06:45 PM	#16
Cruella 66 DIS Veteran Join Date: Jun 2007 Location: Two stars to the right and straight on until morning Posts: 771	Wow...can't believe I found this thread. My mom was just diagnosed with ALS in April. She's determined to be as independent for as long as possible but is having speech difficulty, swallowing difficulty and is getting weaker and more tired by the day per my sister. It's very difficult too as our grandfather also died of the disease in 1985 when he was 54. My mom is currently 57. I feel like I'm staring my future in the face as it's probably FALS and I, my siblings and children have a 50/50 chance of getting it. I'm going to hook up with the local ALS support group when I finish with our Disney trip. I'm also taking Prozac, trying to stay positive and accepting that my future is up to a higher power. My heart really goes out to the young man, 35, with the disease. Cindy

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08-07-2007, 08:13 AM	#18
jacksonsmom Can you guess who I am a mom for? Come on, I'll give you three guesses! Join Date: Feb 2003 Location: Minnesota Posts: 3,351	Wow I am surprised to have found this thread. I never come on this board, didn't really know about it. First I am very sorry to hear all of those that are dealing with ALS. It really is a nasty disease. I only pray one day someone finds a cure! My dad currently is battling ALS. He started having some muscle weakness in his right hand in August 2005. By January of 2006 the doctors diagnosed him with ALS My dad is only 50 yrs old. Currently he is doing "OK". He just recently took a trip of a lifetime to Alaska. He really had the time of his life there. I am so happy for him that he was able to go there. My dad can still walk but recently he is expereincing weakness in his right leg. His right hand/arm is pretty much useless. His left one has lost a lot of muscle too. In fact my DH was just over at his house this weekend changing the door handles because my dad can not turn a doorknob anymore. He now has doorhandles that you push down and then push the door out (kind of hard to explain). Since the beginning he has lost a total of around 40 pounds. He is very thin. His speech is very affected, he slurs heavily. He recently went to the Courage Center here and he will be getting a machine that he can talk through and will allows others to hopefully understand him better. He has a hard time swallowing and coughs/chokes when he eats. It is a VERY frustrating disease for all those invovled. My dad can not bathe himself or even help himself when he uses the tiolet I will say although the future is bleak my dad is living life as much as he can. He CAN still walk and although it is a struggle at times, he CAN still talk! We don't know how long he will be able to walk on his own but we are thankful for whatever we get. One thing I want to say is ALS is a HORRIBLE disease. As family supporters and caregivers we HAVE to support the person with the disease wishes! My dad will NOT go on a breathing tube. Of course knowing that I know his life may not last as long then if he did have a breathing tube But those around him have to support HIS decision. We are not the ones living with the diease. My dad's doctors have recommended a feeding tube but again my dad just is not ready for that. He may never be ready. Again us supporters have to support his decision, no matter how hard it may be. It has been about 1 1/2 since the official diagnosis, 2 years since the first symptom. My dad has progressed quite a bit since then. I don't know what the next year or so will bring but one thing we learned about this disease is just one day at a time and love one another. Again I am sorry to hear those that are battling this disease.

08-07-2007, 05:45 PM	#19
Cruella 66 DIS Veteran Join Date: Jun 2007 Location: Two stars to the right and straight on until morning Posts: 771	I am sorry to hear of everyone's encounter with ALS but I totally agree that it is the person suffering with disease that needs to call the shots and the loved ones that need to support his/her decisions; regardless of their own personal beliefs. I, unfortunately, am in Virginia and the rest of my family in Michigan. I don't see the day to day changes, falls, swelling, lack of eating, etc. Being a RN I can tell everyone the "right thing" to do according to my training but ultimately, it's up to my parents as to what they do. I can't get them to do it any more than if I were there, you know? So, honor them, put your faith in a higher power, and try to smile. Hugs to all, Cindy

09-09-2007, 06:41 PM	#21
Cruella 66 DIS Veteran Join Date: Jun 2007 Location: Two stars to the right and straight on until morning Posts: 771	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

09-10-2007, 10:59 AM	#22
LuvOrlando DIS Veteran Join Date: Jun 2006 Location: Every day I'm shufflin' ; ) Posts: 9,287	Sorry Artoo, I'm wishing you

02-12-2008, 04:35 PM	#26
Cruella 66 DIS Veteran Join Date: Jun 2007 Location: Two stars to the right and straight on until morning Posts: 771	Wow, that's incredible. I sent this onto my family! Thank you for sharing. Cindy

02-13-2008, 05:36 AM	#29
Cruella 66 DIS Veteran Join Date: Jun 2007 Location: Two stars to the right and straight on until morning Posts: 771	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

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