RA suggestions please

[DVCjj]

I’m so glad your trip wasn’t ruined! Steroids can be a life saver with RA. They may talk with you about biologics next. They can keep it in good check. Did you walk the parks? If so, that may have triggered the flare in part. When I was first diagnosed, I still walked the parks. Then I progressed to a cane. Finally, I started renting scooters. A little while after that, I needed the scooter for the Riverwalk and anything else that required much walking. (I also have MS, so it’s not just RA). Hang in there, but if it gets harder to keep up, don’t hesitate to use a device - wheelchair, scooter, etc. It will make the trip easier and more enjoyable.

Thank you for the kind thoughts and suggestions. Yes, thus far this I was able to walk around the park. Certainly not commando style like all past trips but thankful I didn't ruin the vacation for (adult) daughter. I do think I overdid it and paid the price for sure. I have serious migraines and know very well what pain is but the RA even exceeds big-time.

I definitely would be willing to rent an ECV. (Adult) daughter is already planning on running alongside it. (though getting up and down a bus ramp scares me to death when I watch others).

 

[MS_Warrior]

When you do it the first time, ignore the people watching you, and if you have issues, the bus drivers are always kind enough to help. Some of them even prefer to parallel park for you. The first time I rented, I rented from Buena Vista. The ECV they brought me was a huge 4-wheeled boat. I never could park it. After that, I made sure I got a 3-wheel (not as stable, but much easier to handle) and even after many years of doing it, some bus drivers still prefer to park it for me.

Also, if you are uncomfortable, you can drive straight up the ramp and ask the driver if he/she would park it for you. I’ve never seen one refuse.

You’ll do great, and the trip will be so much more enjoyable when you don’t kill yourself. Just practice driving at the hotel before you go to the park and take it slow. The biggest complaints I’ve seen about ECV drivers are the ones who crank it up fly through the parks. I usually keep mine a notch above turtle mode or in turtle mode depending on the crowd level.

 

[Pridemom]

1/2 way in the trip both feet, ankles, knees and hips were burning up and throbbing. My daughter back home called RA Dr and she immediately called TURNER DRUGS near Disney World and literally within 50 minutes the lobby CM's were calling me to pick up a Turner Drug delivery. It was a steroid pak and I felt better in hours. I was so thankful the trip wasn't ruined and I'm not sure if everyone knows what a blessing Turner Drugs can be for any drug needed illness but in my case, RA. (the Methotrexate and ibuprofen did not cut it and I'm sure other drugs will be added).

PS: I'm sending the drug receipts Turner gave me into Medicare and Supplement.

I have juvenile RA. I always travel with a prednisone pack. As much as I hate taking it, it can make the difference between a ruined vacation and feeling good enough to enjoy it.

 

[musicmom3331]

I have RA and used to walk the parks. Dr. prescribed prednisone for the trips. My feet were in such agony every evening, so the last trip I rented a 3-wheeled ECV from Buena Vista. I had the best trip! I brought a towel for the seat, and a shower cap to cover the front basket. BV gave me a couple of disposable ponchos, and they were great to cover the ECV during rain. You want to keep the controls (tiller) dry. I found the lights on the tiller to be annoying in the dark, so I tied a Minnie bandana to the handle so I could drape it over the tiller lights. The bandana also helped me to quickly identify my ECV after being on a ride.

I practiced with the ECVs at Target and Walmart. Their controls work by pushing with your thumb. That was not comfortable. Check with whatever company you rent one for the type of controls. You pull back the lever on Buena Vista's controls. There are threads on this forum for the different rental companies. Another perk of having an ECV is being able to explore the resort. I wasn't able to do that walking.

 

[Simba's Mom]

Their controls work by pushing with your thumb. That was not comfortable. Check with whatever company you rent one for the type of controls. You pull back the lever on Buena Vista's controls. There are threads on this forum for the different rental companies. Another perk of having an ECV is being able to explore the resort. I wasn't able to do that walking.

I know exactly what music mom's referring to regarding your thumb and controls. I have arthritis in my thumbs and hated that with the Walker scooters (maybe they've changed-it's been a few years). Gold Mobility had the lever controls AND the levers are curved. I prefer that so much that I made sure the scooter I bought had that kind of handle.

 

[HappyDisneyWife]

Thanks everyone for the suggestions. I’m hoping to be able to do a combination of being pushed, self propelling and walking while pushing the empty chair.

I know I’m late to the game here, but I just want to say that after reading through replies here & considering my own experience- pushing it hard at Disney can (sadly) be a quick way into a rough flare-up, or potentially even progressing your disease. Please realize how hugely different it is from normal life and allow yourself to be taken care of properly.

Disney is a big part of how I was finally diagnosed! I took 4 trips in 4 months. The first trip I power-walked, carrying a small backpack (like I always did). After getting home, I started having new pain & problems, so I went to PT. The next trip I walked just a touch slower (still faster than most park guests), carried nothing, began using pain med’s daily (just to get through the trip), and started having horrible flares (without knowing what the heck was going on!). The third trip was excruciating. Some days, nothing worked & I couldn’t even sleep due to full-body inflammation. Before the fourth trip, I was finally diagnosed with RA (& lots of other things!)! I rented a motorized wheelchair (bc my husband insisted) and I’m so thankful that I did!! Rolling over bumps was problematic & I still needed medication to enjoy it, but I could actually enjoy it!!!

I wholeheartedly believe I should push myself to do all that I can do, but I also know that Disney is a different beast & I respect it. It’s just not worth it to me if it can make my disease progress. I will do all that I can do at home. I will enjoy Disney. I will still get up and walk around in the parks when possible, but I will not let myself push it too far (literally or figuratively). It took me awhile after the diagnosis to figure out how much “muscling through” I can do, and what the repercussions might be if I don’t listen to my body... I still get surprised at times, but much less often (& they’re not as bad either ).

I have since purchased my own chair - a Fold & Go Magshock (I had a lot of specific requirements for a chair that would work for all my needs ...& with a little modification, it’s pretty near perfect for me!). I certainly don’t need it all the time, but I do need it for more than just traveling at this point. Hopefully after a few surgeries, I won’t need it anymore!

I use my Fold and Go, which has the maneuverability of a manual, in addition to the convenience of having power of a scooter. (Warning, once you try this, you’ll never wanna go back to a manual wheelchair ever again.)

1,000 times, yes!!! It is the best! (& btw- it can get wet without issue- so no draping ponchos ️).