We were at Epcot, Disneyworld, MGM, & Universal in Orlando back in the 90s & had my son who was then 11 & in a wheelchair with us. They were wonderful, as far as not having to wait in lines, etc. I now am disabled with CIDP & wear AFOs & walk very minimally, yet I travel quite a bit. I use my transport chair in the airports & museums, but I could never walk two miles ever. Make sure he gets up often on the plane to prevent blood clots, just a walk to the restroom a few times helps. They do have mobility scooters for rent at all of these places; often worth it, even if he can walk, as it conserves on one’s energy. Have a great trip, just make sure he gets enough sleep or naps as needed.
I sent you a private message which answered your question. According to the words of neurologist Dr. G, I am CURED of CIDP. I have been off all treatments other then PT to maintain for seven years and I just don’t relate to all the sessions. Just didn’t work out to take pictures, tape recorder was broken when I unpacked. I tried not to show on outside, but inside I was pretty well shaken almost losing wheelchair and things just didn’t fall into place for me so I could be a reporter for forum. That happens to me when stress becomes extreme.
Check with administrators to see what foundation will have available. Next communicator should have articles.
OMGosh Laurel -“Dont over do things” is something i am continuously telling myself as I am like a bull in a china shop!!!!!!! (at 200km/hr!!!) wheelchairs and i do not see eye to eye!!! I avoid them like the plague and to even consider using one is almost like admiting defeat to CIDP! (They are definately ranked in my quad status equipment pile – of which i have no intention of dusting off ,again!!!)
I totally understand where you are coming from though, and thank you for your practicle suggestions, I have already had close family members suggest the same – (if it were role reversal i guess i would say the same to my hubby) but even he wouldnt dare suggest it to me for disney land – I guess he understands how traumatic it was for me to go from being so active to becoming fully dependent – and how I am such a stubborn and overly determined (to my own detriment I admit, at times)person. (My biggest current health prob is a stress fracture to pelvis – from a recent half marathon – my 4th one in a year – so have taken heed and did dust off an elbow crutch to allow for proper healing 😉 and have hit the swimming pool instead to keep me sane!!)
The afternoon nap is already on the agenda as kids will need a kip if they want to see Disneyland lite up at night and the fireworks etc.
many thanks again – and looking forward to discovering some of the beauty ofyour country! 🙂
I bought this one from Costco and love it!
Used it in disneyland and several other wheelchair users were asking me where I got it.
It is very easy to put togther and has a bag that everything fits into.
Great for travelling, I would suggest a cushion if you are in it for long periods of time.
It even has a drink holder!
Great for travelling on planes as well.
Rhonda from Canada
UltraLight Freedom Transport Wheelchair by Medline® – Blue Aluminum Frame
Weighs just 14 pounds & includes canvas tote and adjustable cane
Item # 186538
I was diagnosed with CIDP in December 1998 and within a years time I became wheelchair dependent. I cannot stand freely and stay on my feet, I’d be on the floor in seconds. But if I hold onto something sturdy (not a person) like a walker, I can do a very limited amount of walking around my apartment.
I know that I am life dependent on a wheelchair, but I don’t think I am typical of the outcome of a person with CIDP, that’s another story though. I roll to the beat of a different drummer.
I think that you might have a problem getting medicare to pay for one and if you’re approved, they paid 100% for me. Usually a store that works with medicare brings the scooter to you to demonstrate it and it’s going to be obvious that you can walk. And even if you went to a medical supply store to pick one up, again it’s going to be obvious that you can walk.
You could try looking into a used one.
I believe it’s called “Pay it Forward” by some? We sometimes forget that there are so many really wonderful people out there. I can walk, but choose to use my power chair part of the day to save on my energy level as well as my legs. It makes a wonderful computer chair, as well as a chair to read the newspaper. But I got it over 5 years ago when I was at my worst, so the insurance company never questioned it.
I also have a brand new manual wheelchair which was given to me by the same company that I bought my power chair from; they just never charged me for it even though I left messages. Incidentally, years ago they also wrote off one of my son’s wheelchairs when the insurance company was balking at paying for it. Maybe the owner (who knows us well) just couldn’t believe that one family could be hit so hard twice?
I don’t know either how Canada is with insurance, but do find out if a wheelchair is covered. You will need a prescription from the doctor saying a wheelchair is necessary due to a medical condition. Like Pam H. said, a power chair would be best if your mother does not have arm strength. But, a power chair can present problems, are the doors and doorways of your parents home wide enough. Do your parents have a van or SUV or do they only have a car? If your parents only have a car, can a lift be put on the back of it? And again, if they only have a car, you’ll need a power/electric chair that can be dis-assembled and re-assembled. With a van or SUV, you can get ramps, so the power chair can be driven up and into it.
I would only get a manual wheelchair if your mother has the arm strength to wheel herself around, carpets also take alot of arm strength. I use a manual wheelchair and I need to know I can put my feet flat on the floor when I sit in it. I like the “desk top” arms because they make it easier to pull yourself up to a table to sit. I prefer the pnuematic (rubber) tires to the polyurethane. And a smooth wheel rim to place your hands on. Brake extenders also help, makes it easier to put your brakes on and off.
I am mostly dependant on a wheelchair since 1999, around the house and going out. I can do some walking with a walker, short distances and that includes going out, but am quite limited when trying a cane. I use a manual and stay in it more then I should or need to, but I am caregiver to my mother (who I live with) and must remain mobile. Another reason I stay in wheelchair is because there is no-one to fetch and carry for me, so must keep my hands free.
I had one of the worst cases of CIDP my neurologist (who is a specialist in GBS/CIDP) had ever seen. I went from perfectly fit to a power chair in one month’s time, with almost no use of my hands. I would remain this way for over two years, as I was refractory to IVIG, PP & steroid treatments. Anyways, today I walk with AFOs, & use a cane outside the house. If I get 10-11 hours of sleep a night, I think I lead a fairly normal life for someone who is now 53 (5 years out.)
About the wheelchair, by all means use it to conserve your energy. We are given just so much per day & sometimes it is a balancing act on how to use it. If you push yourself, you will only pay dearly later on for it. I also use a wheelchair for long distances, but not for things like grocery shopping or a trip to Target. If I can psh a shopping cart, I find I can walk much farther.