Juvenile ALS

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monkey

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PALS
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AR
City
Dover
Does anyone here know about Juvenile ALS? Is it genetic or sporadic .. Or both? I have read that is it extremely rare and occurs between 18-25. I also read that is tends to degenerate slower than normal ALS. If anyone has any other info please share, thank you.
 

Omar

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Apr 13, 2007
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08/2006
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BE
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Belgium
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Brussels
hey,

I was told by my Neurologist that the clinical presentation is strongly suggestive of ALS and considering my relative young age one can think of a juvenile form of ALS. The onset however for jALS tend to be earlier and has a different clinical phenotype. For this reason they did not do further analysis for the ALSIN gene. The analysis for Hereditary Spastic Paraplegia genes (SPG) is still in progress.

Omar
 

Al

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On
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There isn't a lot of information on this forum about Juvenile ALS I guess because it is so rare.
AL.
 

brooksea

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Monkey,

Don't know if this will help - check it out:

juvenileals.org

CJ
 

sarah

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Jun 11, 2007
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Oregon
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North Bend
My husband was diagnosed with als in september of 2003. He is 26 now. His progression has been slow but steady. About every 6 months or so something new has happened with him. Like he would lose more strength, his speech will get worse, just one thing at a time. He is at the point now where he cannot move unless I move him, his speech is almost gone, he has a feeding tube in, and can only drink sips of water. He is a very strong man, and I think the only thing that keeps him going is our 2 1/2 year old daughter.
I am not sure if it is genetic or not? No one in my husband's family that he knows of has had ALS. Hope this helps you out.
-wife of als patient-
 

brooksea

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d#@*

Sarah,

This pulls at my heart!

Sorry I have to go
 

vmd

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Sarah:

Welcome to the boards. I will keep you and your family in my prayers. Your husband is a strong man, and the fact that he is concerned about his daughter's needs is a symbol of his strength and character.
 

sarah

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City
North Bend
Thanks for the welcome

annmarie-
thank you for your welcome. I have been searching for a chat room like this for a while now. I am glad I found it, there is allot of advice and support here.
thank you, Sarah
 

CindyM

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Hi Sarah- I, too, am glad you found us! You certainly have your hands full with a toddler and a PAL to take care of. Don't forget about Sarah! She needs rest too!:smile: Cindy
 

dana

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Mar 17, 2005
Messages
216
Hi Sarah,
I'm from Oregon too. Where abouts are you from. My family lives in Southern Oregon, and my dad is the one in our fam who has ALS. It is a tough disease. Your husband is so young to be going through this...you too as a caregiver. Anyways, sounds like we have some things in common. I have a 3 year old little boy and a four month old little guy. They both bring so much happiness on hard days. Welcome to the forum. You will find such good support here.
Dana
 

sarah

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Messages
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Country
US
State
Oregon
City
North Bend
dana said:
Hi Sarah,
I'm from Oregon too. Where abouts are you from. My family lives in Southern Oregon, and my dad is the one in our fam who has ALS. It is a tough disease. Your husband is so young to be going through this...you too as a caregiver. Anyways, sounds like we have some things in common. I have a 3 year old little boy and a four month old little guy. They both bring so much happiness on hard days. Welcome to the forum. You will find such good support here.
Dana
Dana-
I live on the Coast in North Bend Oregon.
Yes, It is hard being my husbands caregiver, but If I were in his shoes I would want him to do the same. We have good and bad days, but who doesn't!?!
Our daugher is our pride and joy! She is what keeps chris going. She loves to help out with her daddy. If there is something she can do for her daddy than she is on top of it. She is very protective over her dad, I love it, and so does he!
Thanks for the welcome.
Sarah
 

sarah

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Joined
Jun 11, 2007
Messages
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US
State
Oregon
City
North Bend
CindyM said:
Hi Sarah- I, too, am glad you found us! You certainly have your hands full with a toddler and a PAL to take care of. Don't forget about Sarah! She needs rest too!:smile: Cindy
Cindy- Thank you for the welcome. There is alot of friendly people on this site!
It is very hard to find time for myself. I don't get much at all. A hospice nurse comes once a week, but I spend that 3 hours doing my shopping and other things. My free time is when chris and my daughter (amber) are taking a nap. I try and lay her down when chris is starting to dose off. Naps are out of the question for me. We usually go to bed around 11pm-12pm and I get up with amber around 8pm. Sounds like a good night sleep, but its really not. I have to roll chris over every hour and a half because his shoulders get sore. It sucks, but there is nothing we can do about it. I just drink lots of coffee :) Need to go!
Sarah
 

dana

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216
Hey Sarah,
If you like coffee, one of my dad's franchises is in the North Bend area I believe. It's called Dutch Bros. Coffee. You will have to give it a try and let me know what you think.
 

sarah

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Joined
Jun 11, 2007
Messages
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US
State
Oregon
City
North Bend
dana-
I love Dutch Bros. Coffee! I used to get their coffee all the time. Now when I am out and about, All I do is get my shopping done and come back home. It has been a while since I have had a dutch bros. coffee. Sounds good! Are they still collecting $ for the ALS cause? If they are let me know and I will find time to stop by and donate. Tell your father, they make great coffee, it is the most popular coffee joint here in North Bend.
Sarah
 
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