I am 25 with familial ALS- "Sayin Hi"

[Meggers]

Ok here is my story,

11/12/2008 I was diagnosed with ALS. I am 25 years old as of two weeks ago. My father died when I was 6 at the age of 35. He was diagnosed and gone within 6 months. I vividly remember what this disease did to him and I am in no way looking forward to it. 7 years later in 1998, my uncle passed away at 50 something. In 2003 , my other uncle passed away. Both cases were diagnosed and they had passed in under a year. So I a bit stressed that I too will progress as quickly as my family. My grandfather, great aunt, and great grandmother also died from ALS.

I am ready to do whatever I can. Not to survive, but prolong mylife. There are still things I want to experience and I am determined to do them. I can't move from the knee down and have weakness and atrophy in my thigh and gleut, all on my left leg. I twitch all over, which is annoying. I am on Rilutek and might start taking lithium.

So if there is anyone out there who has lived with this for a long period, let me know. Also if there is anyone my age.

Thanks so much,

Megan :shock:

 

[4rhl1981]

I'm sorry to hear about your DX and the loss so many of your family member. I notice you are from Lake Forest, I bring it up because I have seen allot of ALS patient on different forum including this forum from that location. Just wondering if you knew others from that location with ALS?

 

[SMillheiser]

Greetings from San Juan Capistrano

Megan,

I'm right down the freeway from you in San Juan Capistrano. There is a guy in San Clemente that has lived with ALS for 15 years. I also know a young lady not much older than yourself. Check out my website at ALSGuardianAngels.com and let me know if I can do anything to make your life a bit better.

Stu (949)488-9894
[email protected]



QUOTE=Meggers;63782]Ok here is my story,

11/12/2008 I was diagnosed with ALS. I am 25 years old as of two weeks ago. My father died when I was 6 at the age of 35. He was diagnosed and gone within 6 months. I vividly remember what this disease did to him and I am in no way looking forward to it. 7 years later in 1998, my uncle passed away at 50 something. In 2003 , my other uncle passed away. Both cases were diagnosed and they had passed in under a year. So I a bit stressed that I too will progress as quickly as my family. My grandfather, great aunt, and great grandmother also died from ALS.

I am ready to do whatever I can. Not to survive, but prolong mylife. There are still things I want to experience and I am determined to do them. I can't move from the knee down and have weakness and atrophy in my thigh and gleut, all on my left leg. I twitch all over, which is annoying. I am on Rilutek and might start taking lithium.

So if there is anyone out there who has lived with this for a long period, let me know. Also if there is anyone my age.

Thanks so much,

Megan :shock:[/QUOTE]

 

[tmasters]

Megan,

Welcome, but sorry you have to be here.

I'm in Anaheim. We have our ALS support group meeting the 2nd Monday of every month at 7PM in Tustin. Come join us on Jan 12 if you like. Really great group of people. Ask me or look it up on the ALS Association web site alsaoc.org .

-Tom

 

[kylisa]

Hello. Sorry to meet this way of course. You are dealing with the worst type of AlS,
the inherited kind. All I can say is to take advantage of whatever the doctors and/or clinic offers. Do not linger on the thought of time you have left, make the most of right now. Get signed up on disability, if you haven't already. Do whatever you are able to do and savor it.

Lisa

 

[jonsjr40]

Hi Megan
My name is John I have had ALS for17 years. I have never taking anything for it but I did work out a lot and did as much walking as I could. I'm no Doctor but I think it help me out. I don't know anything about Rilutek I took it for about a month it made me fell worst. Well if you ever want to talk you can email me at ( [email protected] ) Well take care and I am very sorry for your diagnosed.
GOD BLESS YOU
John

 

[Meggers]

Tom-

I will be at the support group in January. I missed it in December because I had too much going on. It is nice to know there is someone else in my area. My family all lives in the bay area and my friends don't really know how to react. I'll be moving to Orange next month , I can't do stairs anymore. I'll study your picture and I'll keep a lookout for you on the 12th. Happy Holidays. Thank you.

-Megan

 

[CindyM]

Hi Megan- glad you found some friends already. I just wanted to welcome you to the forum. Cordially, Cindy

 

[tmasters]

Hi Megan,

That's great! I'll try to keep an eye out.

-Tom

 

[viviana]

I am 21 and diagnosed with ALS

hello Megan,

I have just been diagnosed with ALS and I am 21 with no family member history. do you have facebo? my id is viviana, we are going to beat this disease

 

[Al]

Hi Viviana. Welcome but I am very sorry that you had to come here at such a young age. Feel free to ask questions or use the search above to find information.

AL.

 

[rose]

Hi Viviana,

What a pretty name you have. Welcome to the forum. Please feel free to ask as many questions as you need, and to make yourself at home here.

 

[sharonca]

For all in So Calif - there is a seminar regarding the latest research put on by ALS TDI on March 28 in Brea. For info look at the ALS.net web site.

Sharonca

 

[SMillheiser]

Reminder

Meg,

ALS Guardian Angels is also in Orange County,CA I'm in San Juan Capistrano. If there is ANYTHING I can do for you, just let me know. There are members in these forums that can assure you that I'm for real.

Stu O) 949-488-9894 C) 949-233-3045

 

[viviana]

scared to death

Hello everyone,

I have just been diagnosed and I am very scared...only 21 and it seems like my ALS is progressing fast - 3 months ago i was fine...now i can barely walk..speak
If anyone wants to share their stories with me...I would appreciate it...I feel very anxious about the next months...