6 replies to this topic

[wildfire1638]

I am not sure if I belong but I wanted to say hello and hopefully be welcome here. I have enjoyed reading the posts at this website. I have a disease known as syringomyelia, and eventually I will be completely disabled. I have central pain in my left arm/hand that can be severe. The cyst (syringomyelia) is in the c6/7 area and I have known about this disease for four year. The cause of the syringomyelia is unknown. I am becoming progressively worse, my doctor says that payalysis can be expected and I wish I didn't know, because now I am waiting for it. I feel like I am still young at 39 years old, and the future has left me feeling scared. Thank you

[hockeydahc]

you're always welcome here.

I can't speak intelligently on Quad situations, but worry equals stress, and stress is not good for your health.

get out there and live it up. If it is going to degenerate, why waste the time before it happens?

[cate]

wildfire1638, on Jul 18 2007, 02:23 PM, said:

I am not sure if I belong but I wanted to say hello and hopefully be welcome here. I have enjoyed reading the posts at this website. I have a disease known as syringomyelia, and eventually I will be completely disabled. I have central pain in my left arm/hand that can be severe. The cyst (syringomyelia) is in the c6/7 area and I have known about this disease for four year. The cause of the syringomyelia is unknown. I am becoming progressively worse, my doctor says that payalysis can be expected and I wish I didn't know, because now I am waiting for it. I feel like I am still young at 39 years old, and the future has left me feeling scared. Thank you

Hi
You are welcome. I hope you can get help and information on here, But agree with poster, enjoy things while you can and do all that you can. and hope things do not move fast for yhou. Think also stress will not help, So try to not fret too much. Easy to say but not do.
Cate

[nomis]

Hi wildfire1638
You're right to be scared. It's an uncertain future. I guess if any of us look to our future we can find things to freak out about.
The future is going to happen, whatever.
I'm with hockeydahc on this - lap up life now like there's no tomorrow. Minimise any future regrets by doing and seeing what is important to you.
Have fun doing it. Let tomorrow take care of itself.

[wheeliebear75]

You know I think that if we knew we were going to become paras or quads we may have done a few things that we'd wanted to do. You do at least have that. It may not make it easier, but if you do everything you want now while you can at least you'll have happy memories to look back on rather than a bunch of "I wish I had"s. And you most certainly are welcome here.

[miss piggy]

welcome

[wildfire1638]

thank you for your kind replies. you have helped make me feel welcome.