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!

Mobility Works

We purchased a new mobility van. Yes ANOTHER one! I know we just got one last year, but the ramp was manual and it has become difficult for me to raise and lower since I broke my back. Plus, I wanted Jamey in his wheelchair up front with me instead of by himself in back. I swore we'd never go through the excruciating process of buying another van, but necessity dictated! The process is challenging to say the least.

I'm not gray, I'm dark blue!

I took Jamey down to Mobility Works a couple of weeks ago, to try out several van configurations to be sure his chair would work. Since the closest MW to us in Sacramento it takes a good hour and a half to get there. We have a wonderful sales guy, Joe, who had everything set up for us before hand. Jamey tried 3 different vans. The VMI had the most room in it for easy turning (he needs to enter up a side ramp, turn the power chair in a tight circle, back up slightly, and drive into the front passenger's side, to be locked into place). But it had some issues that would cause problems down the road. The other two brands, Toyota and Dodge had comparable interiors but they each offered something different. After some discussion, we decided on the Dodge Grand Caravan. We have had those as conversions in the past and they have served us well.

Aside from the obvious wheelchair issue, it's more work for us to purchase a van than it is for the average person. First of all, I cannot do a test drive because I require hand controls to drive a vehicle. That makes it a bit of a crap shoot. In addition, once we decide on a van (a job in and of itself), we must mentally add to the price to have the hand controls installed. The installation takes about 5 hours (this time it took 7) because they take the controls out of our old van and install them into the new van. That saves us a little $.

Accommodations for the wheelchair are almost as complicated. If we decide we want to lock in Jamey the most secure way possible, we need to have an EZ-lock system put into the van.That takes about 3 hours and can't be done the same day as the hand controls. In addition, every power chair he owns (he has 2 currently) will have to have a special apparatus attached to the bottom, to catch the EZ--lock and snap it into place. That system is additional too.  We've opted to wait for the new power chair before installing it. Meanwhile, we will lock him into place with straps that attach to the floor. (Don't tell anyone he's into this bondage thing).They did take the EZ-lock out of our old van and gave it to us in case we want to put it in later. That will save us some money in the long run too. Always a good thing. 😉

So, the next step was to find a used van that had everything on it we needed. I also wanted something NOT WHITE. I know it seems like a silly request and shouldn't even be considered, but really, I'm just tired of white. The last two vans we've had have been white. Unfortunately, the converted van availability is 98% white, so Joe had some searching to do.

It didn't take him as long as we thought it would! So we are the proud new owners of a 2013 Dodge Grand Caravan with everything automatic (that was the point after all). It was half the price of a new one ( the trade-in helped). Let's just say the quote for a new one was 6 figures. I saw that first quote and thought, 'Used is good. Yeah, let's go with used.' It's still an outrageous amount for a mini van, but when you're in this situation, you have to go with what works.

All in all, the process took us about 3 weeks, and several trips to Sacramento, but we survived (although Jamey as been asleep since we got back 5 days ago LOL). I will never go through the excruciating process of buying a van again.

I know...Never Say Never.

Go River Cats!

As most of you know (especially if you are Giant's fans) Sacramento's Raley Field hosts a Giant's farm team called the River Cats. Turns out the drive is about the same distance we drove to see the Giant's play at AT&T Park. The nice thing about Raley is that it's a lot more disabled-friendly, and holds fewer people. So, for those of us who have trouble walking in crowds, it's just right! Very much like Spring Training ballparks.

The church that Jamey's parents attend, gets group rates once a year, and we were able to join them this time around. Since the seats were in a reserved section, and differently-abled folks can sit in any open spot behind the first section of seats anywhere in the park, his parents were able to find us an opening right behind their church group! And it was a great view! Jamey just drove his chair into the empty space and I sat in the stadium seat right next to him.

It is fun to watch up-and-coming pro leaguers, along with some that have been to "The Bigs" and come back to AAA because the injured player they replaced got better. We saw lots of names we recognized; Trevor Brown, Conor Gillaspie, Mac Williamson, and Jae-Gyun Huang. The roster is filled with great prospects. In the end, we didn't win, but Mac hit a homer to put us ahead in the 8th. It wasn't enough but it sure got us going for a couple innings.

It's always difficult for us to do something new, especially where crowds are concerned, but we are glad his parents asked us to go. It was worth the time and energy. Looks like we can get our dose of baseball now and again without traveling all the way to Arizona!

Custom Power Chair!

We drove to Sacramento today so Jamey could be assessed for a new power chair, or so we hoped. I was sceptical because of all the hoops Kaiser makes us jump through on a regular basis. Also, I had called both Kaiser AND Medicare last year to ask if they would cover a new chair for him and they both issued an emphatic NO. So, we ended up buying our own chair out-of-pocket.

When the PT came to the house a few weeks ago, the first thing she said was, "That chair doesn't fit you right." She took info back to her supervisor and asked that they order him a custom chair. We knew that was going to get above the $10,000 dollar range, but I was willing if he could have a chair that would fit him properly.

Kaiser's PT needed to see the chair he was in and determine whether or not he should have a new one...and whether they would pay for it. I've been whining ever since I found out we had to go to Sacramento to get assessed, as I knew they wouldn't see it our way!

Long story short, my dinner will be crow tonight! They agreed he needed to be fit properly in a new chair and Kaiser and Medicare will take care of 80% of the cost! Woo Hoo!

They measured him (so many measurements!) and went through the entire chair specs to see what he wanted on the chair and how he wanted it installed.They will build his chair to his measurements from the bottom, up.

This chair is the Lexus of power chairs. Up till now all he's had have been Toyotas. This is what they call the highest rated chair, but it is a base model. The cool thing? As his disease changes they can add whatever is needed to the chair. Things like motorized reclining, raising and extending the footrest, joystick digital screen and easy move features. Instead of a single column holding his seat up (like his chair now), there are 4 columns; 1 on each corner. The chair also has a shock absorber system just like in cars. This is going to be one awesome chair! It also goes a lot faster than his current chair. No drifting, Jamey!

So, Kaiser has made a liar out of me, but I am happy to admit it. Jamey will finally be more comfortable. Since he's in the chair so much of the time now, this is a big deal for him. The negative part is that it will take 4 to 6 weeks to get here. 😞 But, knowing that it's coming is so exciting! Can't wait to send you a picture when it comes! right now you'll have to be satisfied with the one from the website. And by the way, don't go thinking you can get one, too. These take a prescription!

And oh, yes, the color? SF Giant's orange of course!!

How Much Therapy Can a Person Take?!

The last two weeks have been packed with appointments! Jamey's doctor ordered him home visits from a Physical Therapist, Speech Therapist, Occupational Therapist, and a Social Worker (not the kind that checks for abuse, the kind that checks to be sure you are getting the help you need). I tried to hide his bruises anyway, just in case. :)

The therapists were given strict instructions from their company, to get all of the therapy done within as few days as possible. Whew! they are following those directions to the letter. We got a call the day after we saw the doctor, and the PT wanted to come over right then. Hmmmm. Okay, we have nothing to do all day, so sure, why not? Every one of the other therapists have either called to make an appointment the same day or the day after. Each of the three therapists needs to meet two him times per week. So, that means last week we had 6 appointments, each lasting 40 minutes to an hour, in only 4 days. And that doesn't include the social worker or the PT who did the evaluation.

In addition to the confusion of having so many people coming and going through the house, three of the four of them had the same length red hair, similar features and the same build. Honestly, they looked like they'd been cut from a mold or something. Is this a new Stepford Therapists thing? Us old folks have enough trouble keeping things straight. Oh, I know, they're trying to confuse us so we'll need more therapy!

Thankfully, I didn't schedule anything on Friday so Jamey could have a day off. Good thing, too, since he was moving pretty slowly by the end of the week. At least the last couple therapists from Thursday were able to schedule themselves in advance and I know what's coming this week.

I know what you're thinking, why would the doctor order this kind of help 20 years into the disease? I thought you'd never ask. With the fluidity of Parkinson's it makes sense. In fact, I think it would be a good idea for all doctors of Parkinson's and the like, to order therapies every couple of years because of the progression of the disease. As the disease changes, so do the requirements of the patient and the caregiver. Having various therapists in the house, while inconvenient, was helpful to us both.

Here is a breakdown of the specialty therapists, in case you don't know the differences.

PT (Physical Therapist): For the physical rehabilitation of people recovering from injuries or disease. The PTs goal is to get the person moving again, restore mobility. In the case of a chronic or terminal disease, the PT will teach patients how to prevent progression of symptoms, or manage their condition more adequately. Some crossover with OT.

*Our PT gave Jamey stretches to keep his posture straighter (I had started referring to him as Pisa), and got him up and walking. The walking was fine while she was here, moving him along every minute, but once she left he wasn't able to do it on his own. I wish I could work with him every second like she did, but it isn't practical with everything else I've got to do. She also started the ball rolling for a new power chair for Jamey.

OT (Occupational Therapist): For helping the patient with ADLs (Activities of Daily Living). The focus is primarily on enabling the patient to engage in meaningful activities of daily life as seamlessly as possible. The OT will be able to recommend electronic equipment, toileting helps, and dressing aids, as well as help set up the home for the patient's needs. Some crossover with PT and ST.

*Our OT wasn't as knowledgeable as I'd hoped. She couldn't answer the questions we asked about urinals and keyboards. It did seem we knew more than she did about equipment overall. She helped him with some hand putty to keep his hands limber and gave suggestions about moving the bed closer to the wall. She did help somewhat, but not with the things we really needed. I'll have to do my own research.

ST (Speech Therapist): For helping with not only speaking, but cognition, memory, and eating issues like swallowing and choking. ST can assist with keeping food in mouth, voice volume and recommending utensils and tools for the above. Some crossover with OT.

*Our ST is very helpful. She has given Jamey ways to increase his voice volume so I can hear him better, gave him tricks to help memory, and helped him with his swallowing. Because Jamey had been to an ST before, I didn't put much stock in this therapy, but she has turned out to be the most help!


Social Worker (sent by Therapist company, not the state): Answers questions about whether you qualify for SSI, how Social Security and disability work, and whether you are being given the correct information to help move you forward.

She was able to answer our questions about whether we qualified for SSI, etc. She assessed our situation and complimented us on how open and ADA compliant the house was for Jamey. Kudos to my father-in-law for that!

So, we've started another week of back to back appointments. Can you tell I'm smiling? We will also take Jamey to Sacramento to be evaluated by Kaiser for a new power chair (bummer, because Kaiser and Medicare told me less than a year ago they wouldn't pay for a new chair so we went ahead and purchased one out of pocket) as the PT thinks it doesn't really fit him properly.

Life is good! It continues on (better than the alternative, I suppose).

Hidden Figures

When Jamey was first diagnosed with Parkinson's, our immediate concern, of course, was how this would change our lives. The day to day functioning, movement, and overall quality of life was on our minds. However, one aspect of the disease we didn't actually consider, was the overall financial burden. Of course we knew we would have more doctor appointments--that was a given--but we didn't think of all of the hidden costs that we would incur.

At the beginning, it wasn't too bad, but as the disease progresses, all kinds of issues crop up. Issues we never thought about.

Medication - The more years we have with PD, the more medication is required to keep his body in check, to keep it functioning, to allow him some amount of control.

Battery changes - This only relates to those who have had Deep Brain Stimulation surgery. It only occurs about every 3 years, but it can be costly. Last time we had a rechargeable battery put in to give us more time. However, 9 years goes by very quickly and our time is just about up again!

Botox - Yes, Botox! Dyskinesia is so strong at times, it clamps his eye shut and causes pain to his face. So every 3 months we get Botox on that side of his face, to help him function better. It really works, but of course, it's pricey!

Chiropractor and PT - It's a continual process to keep his posture upright. Sometimes he is so severely tilted to one side, that his neck causes horrible pain!

Dental Care - It is now necessary for Jamey to get a cleaning every 3 months because he is not able to brush his teeth properly on his own (even with an electric toothbrush). A deep cleaning is necessary (and often painful) to keep his hygiene in check. In addition to the cleanings, he must take premeds before each one, to prevent infection to the brain (this is only because he had the DBS surgery).

Extra Caregivers - I was able to do all of this myself for almost 20 years, but now I cannot do it all any longer (the stroke didn't help). We've had to hire more caregivers and we're at the top of the care schedule, which means we pay the most per hour because of the care needed. This also has its own set of issues. If we go through an agency, they take care of all the taxes and legal end of things. But, if I hire an independent (half the price), I have to have them fill out a W-9 and at the end of the year send them a 1099. If I pay them more than $2,000, I have to take out taxes myself and make sure I am legally on course. It's a great deal of work for the average sod!

Medical Equipment - This includes a patient lift (to help get him up from a lying or sitting position), a van to accommodate his wheelchair, various lifting, dressing, and moving assists, safety bars for walls and toilets, and several kinds of wheelchairs. Fun stuff!

Diapers - This is an added item now that we're in our 20th year with the disease. What is most difficult, is finding the right one that works at the right time. Because the disease changes constantly, what works one week my not work the next. So, we spend a good deal of money trying to find what works for him at a given time, and we have a lot of left overs that don't work at all. I keep all the "didn't work" items because at some point they may work for him. Hmmm, maybe we'll have to add storage unit to this list one day! LOL

Toenail Cutting - He can no longer cut his own toenails. I was able to do it for awhile, but now it's just too difficult for me. I don't want to risk cutting his skin! So we will have a Podiatrist do it for us, once I can find one nearby.

Eating Utensils - A special set of eating utensils is very helpful to Jamey. I purchased 2 sets and it was close to $200 (see "Helps" at side margin), but it has allowed him to continue to eat on his own without help. So worth it!

This is not an exhaustive list. Each person will have their own experience and each person's body will respond differently to the disease. There may be things we haven't had to deal with (swallowing issues for instance) that you may have. I know it looks daunting, but remember, this is after many years with the disease. I just want to point out things you might not think of, so you can be saving for them right  now. If you have good medical insurance, that's a plus! Medicare used to pay for many of these items, but they no longer do. I hope that will change back at some point.

The most important advice I can give you through all of this, is to enjoy every minute you have with each other. Whether you are a husband, wife, parent, sibling, or a friend. Every minute you have with each other, even if it's spent caring for them, is precious! Don't let the financial end of things discourage you to the point of depression. Remember, the most important thing is that you have this loved one for another day!