re 32 yr old son

[Guest guest]

Joanie,

Just to let you know I am thinking of you and to let you know just how important

parents are in the chiari scenario. My mother and my husband were there for me

every step of my chiari journey three years ago and still today. They spoke up

for me when I needed it and was unable to do so myself. Don't ever let a dr

make you feel like you don't have a right to ask on your son's behalf.

For his gait problems, possibly a walker would make it easier for him to get

around. I have gait problems too, and used a walker for many months. For

longer trips a wheelchair can make it easier to get around, I walk as much as I

can, then ride a while, then walk...its important to do as much as you can but

quality of life is a big issue too. The wheelchair allows me to do and go many

places I couldn't otherwise.

There are several onboard here that have KF in addition to chiari, hopefully

they will respond. In fact I will send this response to my friend Sam as she

has dealt with it a lot. Check with your dr. about the MRI, perhaps due to the

location of the metal rod, it might work, I don't know.

Keep in contact and let us know what you learn and ask us any questions you may

have. Due to the complications of his condition, it might be good to see one of

the experts on WACMA, someone who deals continually with the disorder and its

complications.

Most of all, hang in there. It can be a long and bumpy road, but somehow we

make it through...with a little help from our friends

Luv & irises, from MT