why so young

[Ontario caregiver]

When my husband was diagnoised in 1999, he was 44 years old. He was considered young to get this disease, now reading the stories on the forum, people are in their 20's,
how sad is this, why the governments in all our countries do not repond for more research do we have to wait till a politcian or president or a queen to get this disease to get their attention.
I know we all here do our parts to help raise funds for research, but we neeed more goverment help.

Just venting, I am just sick to here young one's having ALS with small children, at least in our case our sons where all grown up, when Gary got the disease. I am sure my stress level would have been so high if my kids where young. For all the real young caregivers please hang in there for your love ones. Vent or get lots of knowlege from the group here, as you learn, and you can see steps of the disease you have went through, or will go through.

 

[brooksea]

Thank you Ontario!

I am not that young (50) but I do have a young son. My husband is 48.

Perhaps it is a blessing that my son does not understand and takes all this in stride. On the other hand I do know that our hopes and dreams have changed dramatically. But this is our life and we will make the most of it.

How is your husband?

 

[Omar]

Hey Ontario,
WHAT A POST..
It really touched me not because I am young but because I have been also thinking about our politicians and how cold they are. Yes it seems that as long as they are healthy and wealthy they wont even look at us. I was trying to get a visa to the States, was thinking about traveling as long as I am still mobile, and because it is too complicated to get it from my city Beirut, my father went to see the Minister showing her the report from my Neurologist and asking her for getting us the visa but she was too busy to respond and help. She simply said yes he can apply just like anyone else and she knows that without her help I may not even get it. So I was disappointed, left the country and got it from The Netherlands in one week
And I am afraid cause now that I am over 25, I am neither allowed to get benefits from the social security in my country, nor insured.

Omar

 

[brooksea]

So Omar are you going to come to the states? Do you have anyone to take you in?

Yes, the politicians will never help unless they are touched by ALS in some way.

 

[Omar]

Hey Jimercat, yes finally I am going to the States this Thursday and I will be visiting my aunt in New Jersey. I am excited and preparing my camera

 

[Sammantha]

Your reply reminded me about what my son says about my back, he says "Mommy you have a river down your back with a hole at the end." The left side of my back has significant muscle loss and makes it look funny. My kids have no idea about my disease yet, i am not sure what to say just yet. They just think i like to rest and sleep a lot! Which i do! I grew up in N.Y. only an hour from Ottawa and you are right, there is no reason why this disease has been able to last this long without any scientific breakthroughs. My deepest sympathies to you and your husband because this disease is devestating at any age. The one good thing about it is i do not sweat the small stuff and my senses notice things like when i was a child. The world is brighter and much more precious now, and that is an amazing gift.