A New Power Chair and a Vacay in Disneyland

We just got back from a week in the Happiest Place on Earth, and NSM delivered Jamey's new chair! It sure is a HUGE improvement over what he's been 'driving.' He sure wishes he had had it in Disneyland--would have made things a little easier.

So, this chair is so much more comfortable for him! It was made to fit him alone (too bad they couldn't put a seat on the back for me!).  The only thing he doesn't have is a way to recline it himself. The recline has to be done by a technician. That means we have to call for service, wait for an appointment, and then hope the change works for him. The good thing is that his doctor can recommend he have an additional recline device put on, so when we go to see the doc in October, we'll have him request it for Jamey. That way he'll be able to recline it whenever he wants to.

I mentioned we spent a week (well, actually 5 days) in Disneyland. While it was very challenging, it was worth the time. All our kids and grandkids (one in person and one on the way) were there to celebrate our 40th anniversary a year early. We felt we better do it when we could because of the uncertainty of life. It was so much fun, even though it was a lot of work. We will have wonderful memories for years to come.

If you are disabled and have an opportunity to go to Disneyland, don't stay home because the thought is too daunting. Here are some tips.

1. Stay at one of the Disneyland Hotels, in an ADA room (it is worth the extra money, I promise you). In order of least expensive to most: Disneyland Hotel, Paradise Pier, Grand Californian. The Grand empties out right into California Adventure Park or Downtown Disney, whichever you prefer on a given day.

Up from his chair and 'caning' it for pic!

2. Have them prep your room ahead of time. We had a hospital bed brought in from one of their suggested supply places and that made ALL the difference. It was already set up when we got there. Whatever other extras you need, Disney is happy to provide them for you. (Well, at a price, that is 😉.

3. Don't be embarrassed to ask for assistance. But, honestly, the cast members are so good at identifying issues, you probably won't even need to ask.

4. Stop in at City Hall when you first enter the park. They will be able to give you a detailed map of all the places that work best for disabled people. There are two places in the park that have Companion Restrooms. These are private restrooms where you and your caregiver can go together. No one else is around--just you, or you and your caregiver.

5. California Adventure rides are all ADA approved. So, you can ride your chair or scooter the entire way up to transferring onto the ride. In many of the rides, they will take you out of line and load you before you are all the way up to the front which shortens your wait. The nice thing is your entire party can go with you.

6. ADA requirements were not an issue when Disneyland was first built in 1955. However, they are working on getting all the rides handicap accessible. As long as you can transfer from your chair, you can still go on most of the rides. For instance, to get onto Pirates of the Caribbean, you need to go to the exit area of the ride and get a "come-back" time (it's usually about 20 minutes). Then you go in the exit and they take you from the opposite side of the river where the normals get off the ride (LOL). That means your wait is far less than average and they are very patient with you. Other rides do similar things, so check with a cast member for information, or ask while you're in City Hall.

7. If you're not yet in a wheelchair, but are afraid of all the walking, order a scooter rental. Go online to www.applescooter.com. You can order online and have the scooter waiting at your hotel (any hotel, not just Disney hotels) upon your arrival. The last day, just return it to the Bell Hop and you're on your way. It is far less expensive and more convenient than renting one from Disneyland. I parked the scooter where all the stroller parking was at each ride. Then I was able to stand in line with the rest of our party, all the way up to embarking the ride.

Flying is quite easy if you are in a wheelchair and can transfer out. With Southwest, we checked in at Full Service and received a clearance for security. So we didn't need to take off our shoes, or wait in line with everyone else. Jamey's chair had to be wiped down for possible chemicals but it wasn't that bad. Then we went all the way up to the plane's door and my son-in-law helped Jamey to his seat. They took the chair down to baggage and we were set to go. When the plane landed, they brought the chair back up to him. Everyone was very accommodating.

I don't know how it works if you are wheelchair-bound and cannot transfer, but call the airline ahead of time and arrange for someone to be there for you, to help you get through it. We were blessed to have both sons-in-law and a daughter who is a travel agent, so it was a pretty smooth trip for the most part.

But, I'm telling you from experience, don't miss out on something wonderful because you're afraid of the inconvenience.

It's worth the memory to give it a try!

Talk to the Doc!

One of the things I've found as we've gone about the process of purchasing medical equipment, is that Parkinson's (as most diseases) is different for everybody AND every body. In other words, if someone tells you you'll need such-and-such at 20 years into the disease, you may or may not have need of it. You may require something entirely different than someone else with the same number of years with the disease.

Another thing that makes buying medical equipment a challenge, is there are not a lot of places you can go and try something out before you purchase it. Most of the equipment is available online, but you cannot try maneuverability, fit, or ease-of-use before you order. Something as simple as a carpeted floor instead of a laminate, can make all the difference. And you won't necessarily be able to access that information from the item's description.

However, I can offer a few places where help and demo equipment is available. Your local Bischoff's or Medical Supply Store usually hires experienced people who know their products. There are always exceptions to the rule, but for the most part the employees know how their equipment works. Things like scooters, walkers, safety bars, lift chairs, and canes are all items carried by most Medical Supply Stores. Most of the stores also have demonstration items you can try on for size.

We recently had to purchase a couple of lift recliners as Jamey is having trouble getting off the couch these days (on the days he can actually get ON the couch!). I was very impressed with Bischoff's selection. They had a sample of each of their 8 lift recliners; everything from 3-positions to 5 positions. It was nice to be able to try the different chairs. I'm glad they had demos because Jamey chose something entirely different than what I would have gotten him, had I been on my own. Amazing how many models they have--and each one is so different! Very important to try-before-you-buy. But not gonna happen if you order on the internet.

But if at all possible, I encourage you to go through your doctor for all your medical equipment. Even if your insurance won't pay for the particular item, talk to your doctor first. They know you best and can order what will suit your needs better than you or your caregiver can determine searching the internet. Most doctor's offices have something in place to help them assess what you need.

For instance, Kaiser has a department called DME (Durable Medical Equipment). It is accessed by their doctors, PTs and specialists who determine what the patient needs. If Jamey's Neurologist identifies a need, he will recommend it to the PT, who will assess the size and ability of Jamey before placing the order. Doctors and PTs work closely to determine what the patient needs. In turn, if I feel Jamey needs something to help him move better, I talk to his Neurologist and he either orders it for him or starts the process through the PT again. When the doctor orders the item, it fits right and benefits the patient much better. I have personally had my own doctor recommend a product and go through the HMO's procedure, even if my insurance isn't going to pay for it. That way I am sure I'm getting something that is right for me! And since I'm paying for it myself, it is all the more important.

The internet has everything you could possibly want to help you with symptoms of illness or disease. But from experience I can tell you, it doesn't always work out if you cannot try it first. Talk to your doctor about your next purchase. Of course, for things like power chairs, patient lifts, and transfer equipment, you should go through your doctor, regardless. But, for everything else, start with your doctor first. If nothing else, he can recommend a superior product or direct you to the best place to buy it!