The sun always shines in Florida, Liz!! I am so happy you are confident in your choices – I can hear it in your voice,eh,typing! Let us know how you like the new place!

I would love for it to be so close to home but Chicago is not great at accommodating those with disabilities. Flying in will put you at either O’Hare or Midway neither of which neither is close to the more commonly used convention centers. Parking if you can find it is outrageous – even the hotel charge nearly $18/day to use their lot. The public transportation is bankrupt and there have been many ‘doomsday’ reports that the CTA will be non-exsistent after the beginning of the year…

If they plan right, there is a convention center with nearby hotels in the burbs of Chicago like Rosemont or even in St. Charles at the Pheasant Run Resort (not to mention, they have like 3 pools!).

Don’t get me wrong – Chicago is a lot of fun but not what I consider handicapp-friendly. Downtown Indy would work better with the nearby airport and the skywalks that connect all of it – mall, hotels, centers, etc.

I guess we’ll have to wait and see what they pick!

Oops, the AFOs I use are [B]Swedish AFO [/B]not Swiss. If anyone is interested in the learning more about them, please contact me and I can put you in touch with the owner. Each one only cost $24.10 plus a minimul amount of shipping so even if they hadn’t worked, I still wouldn’t have been out much.

Stacey, it’s going to be okay. I hate my AFOs but I hate not getting around, tripping, and being more tired (from trying to walk without them) even more.

I have a total of 5 pairs of AFOs and each time I was slapped into them, I cried. Each morning, I still dread having to put them on – I feel claustophobic in them. But then when the kids ask if we can go outside (uneven ground) or talk a walk on the prairie path, I am glad that I have the means to do it.

Hang in there and take the hubby up on the offer of new pants. Being a stay-at-home mom, I normally wear a lot of ‘active wear’ which luckily are either straight leg or wide near the foot. The super-flexible Swiss ones are so small compared with some of my first AFOs that they even fit with my slim cut jeans. You do have options!!

Let us know what you end up with!! And make sure you let them know that you are the one that has to wear these. I too have little sensory feeling left but I do just fine with the plastic. Like I said, you can see wear the sore points are and a good orthotist can fix that problem.

Jason, if you feel they are working for you, I say go for it.
I know people who have tried other means to help their illnesses such as religion, acupuncture, etc and they too swear that those things are what works for them. If you feel it works, continue on!

Jodylynn – glad to hear you educated another doctor on CIDP. I know quite a few doctors/nurses who have heard of GBS but unless neuropathy is their field, they are not familar enough with GBS let alone CIDP. In fact, my doc said I had a better chance winning the lottery than getting CIDP, LOL! Figures with my luck. But on the plus side, you have enlightened another person on this illness which may benefit another individual in the future!! Welcome to the boards.

Should anyone want to make this and need a place to stay, you would be more than welcome. And anytime there is 2 or more at this place, it feels like a party, LOL!

That is so cool that the kids’ each had their wish come true. I know the little girl in our church with a brain tumor spent 10 days in Greece with her mom and grandparents. She had rooms fit for a princess to sleep in and there was also a credit card for her to use. Just unbelievable!

Remember that Make-A-Wish and Give Kids the World rely on donations. These donations can be time, money, flyer miles, etc. Take a moment and visit their home page to see if there is anything one can do to make another child have a magical trip.

I hope the vacations were not too hard on the moms and dads:) You all deserve to see your kids being kids so I hope you got your wish too!

The ‘specialist’ told my neuro that I should definetly go on steriods in favor of IVIG. She threw in somewhere that IVIG is very costly.

However, my PT rehab specialist said absolutely not to go on steriods. She said that steriods have never proven to stop how far an illness (such as MS or CIDP) will progress. It has only shown to slow down the rate but the overall outcome is not affected. In the meantime, she said that falls are more dangerous, eye sight is affected, and for a small boned person such as my self, osteoperosis would be a guarentee. And that the cost of a treatment that is proven affective is irrelevent.

Finally, a doc that understands the practical patient side of it.:D

The specialist in Chicago had only 3 other CIDP patients to make her judgement call while the PT specialist has seen dozens of GBS/CIDP patients.

I’m going to convince my neuro to stay with the IVIG. I have enough going on that I don’t need to throw steriods into all of it.