Anyone here have (or know someone with) neuropathy?

[Simba's Mom]

If so, how do you manage it? Does it get progressively worse with time? My mother says her arthritis doctor referred her to a Neurologist because he thinks that's probably what she has. She's had a lot of pain in her legs and balance issues for years. Epidural injections used to work, but not anymore. Does it get worse in hot/cold weather? And how do you manage your Disney experience?

 

[Mickeefan]

Hi!

My Dad has neuropathy (well, at least one doctor has told him that, now they're saying it may not be neuropathy...). I believe my Dad's has gotten worse over time. He's still able to just use a cane around the house & going out while at home. He's found that using a shopping cart helps, too, if he's at the grocery. I'm sure he'll get to the point of needing a walker. He says it's worse in the cold, too. He stopped going to the IU football games because if he got too cold in the stands his legs wouldn't work at all.

Anyway, we rent him a wheelchair or scooter when at Disney and he can transfer out of it for rides. He does great. We rent from an outside company so that he has it available to him from when we arrive at the resort until we check out to head home. If you rent from Disney, you won't have access to it at your resort, and it can be a LONG walk from the parking or bus stop into the parks where you can get the rental. We also request a ground floor room at the resort, so that he doesn't have to maneuver the elevator & hallways. They won't guarantee it, but we've gotten it every time we've asked when we've had the scooter.

If your mother is willing to use a wheelchair or scooter, she'll enjoy her trip to Disney more (& you will, too). I know that if my Dad refused, my Mom & I both would worry that he would fall & really hurt himself.

Hope all this helps you. If you have any other questions, you can PM me. Have a great trip!

 

[Pooh2]

I suffer from neuropathy, it is a very frustrating thing to deal with. Being hot or tired makes it much worse and more likely to trip.
Extremely comfortable footwear is a must, I alternate sneakers with Teva sandals.
Select a time of year that the weather will be not get to warm, take a rest midday and rent a chair in the evening if need be.
Enjoy your trip!

 

[Mickey527]

I have neuropathy and it is really a wait and see disease.
I have more trouble in the winter but when I overdo I get numb too. I just came back from a week at WDW and had no problems except for a few episodes that lasted no more than 10-15 minutes.
I went to Myrtle Beach for a few days and had a few problems whil;e mini golfing with my grandson.
We drove to Washington and stopped for a few days there and my neuropathy was terrible there. It was over 100 degrees and I think going in and out of the AC caused most of my problems there.
At Disney there were a few times while standing in line for a ride when my leg would go numb and if I wasn't aware I would fall over. I sometimes thought people might have thought I was drinking because it looks like that,all of a sudden I can't stand up on one leg.
My neuropathy seems to concentrate itself on my right leg, I have only had numbness in my left leg a few times but my right leg is weekly or more.

 

[SmallWorld71]

My mom (60) has had diabetic neuropathy for many years. Hers has definitely worsened over time. Initially, she was in a little pain then a lot of pain. It progressed to the point where she actually has NO feeling in her feet/ ankles, none at all.

The plus side to this, is the pain greatly diminished.

The down sides are: she really has to watch her feet. Recently, a small cut on a toe wouldn't heal and turned into an infection (diabetic ulcer) in her leg and landed her in the hospital for 5 days.

And, her balance is off a bit, but that doesn't stop her. She does need support for things that aren't so steady - think Peter Pan walkway or similar. Walking has always made her feel better, not worse. So, WDW has not been a problem. Though if she were to go right now, she would need a wheelchair due to the ulcer.

As far as managing, I know she's been on pretty strong meds. ( I think neurontin? for the neuropathy, but don't quote me on that) She's also had cortisone? shots in her wrists.

 

[Ms_Butterfly]

I have neuropathy in my feet/toes (can't bend my toes when walking - have to lift the whole foot up - without the icepick pain, for instance). The best sandals I've found (can only wear toe-ring or thong/flip-flop straps that are not positioned over the toes [my big toes don't have the pain problem]) are by Reef brand and called "Dreams" - they're so cushiony and massage your feet! I've done a week at Disney in them and only had the bottoms of my feet hurt from the walking on the one day (in the middle) that I wore a different sandal (same brand, but not the cushiony "Dreams" line). I pretty much only wear this sandal now (except in the winter weather, when big boots tall enough not to touch my toes is my footwear)!

http://www.zappos.com/reef-reef-dreams-black-black?zlfid=191&reftag=pd_sims_p_ab_1 They also now come in other strap choices under "Dreams Prints", "Star Dreams", and "Playa Dreams", but I have only tried the padded strap in the link I gave.

 

[niftywench]

Hi!
I have neuropathy in my feet and i have found two big things that have helped me a lot: good footwear and a chiropractor. I know chiro does not work for everyone, but i have been going for a few weeks now and found my foot issues getting better a little at a time. but also, i bought myself a really good pair of walking sneakers - New Balance, and i can't wait to wear them on my trip to WDW in September!! it's like WALKING ON PILLOWS!!! GOOD LUCK and have a great trip

 

[Simba's Mom]

Hi!
I have neuropathy in my feet and i have found two big things that have helped me a lot: good footwear and a chiropractor. I know chiro does not work for everyone, but i have been going for a few weeks now and found my foot issues getting better a little at a time. but also, i bought myself a really good pair of walking sneakers - New Balance, and i can't wait to wear them on my trip to WDW in September!! it's like WALKING ON PILLOWS!!! GOOD LUCK and have a great trip

It's interesting that you mention a chiropractor. That's something that's been considered, but we're not sure about insurance. But I think the bigger issue is that chirpractors have gotten a lot of negative press. However, they seem more accepted, and helpful, now.

 

[niftywench]

It's interesting that you mention a chiropractor. That's something that's been considered, but we're not sure about insurance. But I think the bigger issue is that chirpractors have gotten a lot of negative press. However, they seem more accepted, and helpful, now.

I had been afraid to go to one especially after I had my spinal fusion 2 years ago, but my 65 year old father started going and within 6 months he was off of all his pain meds and his neuropathy has seemed to disappear. it is different for everyone so i am told but i was inspired to try after seeing how much it helped him. I also know a lot of people who think it's baloney. I am at my wits end with my chronic pain and neuropathy so i'm willing to try anything! our insurance covers the chiro visits but i have to pay a co pay. So far so good
Good luck to your Mom!

 

[SmallWorld71]

It's interesting that you mention a chiropractor. That's something that's been considered, but we're not sure about insurance. But I think the bigger issue is that chirpractors have gotten a lot of negative press. However, they seem more accepted, and helpful, now.

This reminded me that my mom actually went to a chiropractor for a while for her neuropathy and her arthritis and found it quite helpful. She no longer goes as her disease progressed beyond where it was helping.

 

[Wynnebee]

I have neuropathy in my neck. I can get frequent headaches and I tire easily. I think the big thing is just to rest frequently and know when you are at your limit.

 

[Bellestreak]

Whether or not the neuropathy gets worse can depend on the reason for it. I have diabetic neuropathy in my feet. They are numb, probably forever. But since I was diagnosed last year and have changed to get my sugars under control (this took about a month) the pain has diminished a lot. It took almost a year to go down to being nearly pain free, but it has gotten better. I also do better when I walk. As long as I don't allow my feet to get cold, weather doesn't affect me. I was on Neurontin for most of the year but had to go off it when I became pregnant. I worried at first but have not had any problems.
I visited a chiropractor as well and am planning to try it. We are doing a seven session trial to see if it will help, and will continue if there is improvement.
I also wear comfortable sandals at WDW and don't have any issues.
Again, I think the reason for the neuropathy changes people's experiences.