Central Florida Theme Park Life

As previously noted, I recently moved to Kissimmee, FL - a suburb of Walt Disney World (lol). That places me VERY close to numerous Theme Parks and other recreational spots. I will cover some I have frequented in more detail, later. Meanwhile, a brief synopsis.

Walt Disney World - I am there very frequently, and have found a few accessibility issues. Let me say that Disney WILL try to make things right ... BUT you HAVE to let them know there IS a problem - they aren't mind readers (and they really DON'T want you to be angry over an issue they aren't aware of)! A good example has been the accessible parking durin the recently opened Food & Wine Festival at EPCOT. I had the same issue on numerous days, and at first dealt with Parking Supervisors to try to resolve it, but they were only dealing with it as an isolated instance and were not making long term solutions. What was the problem - I have a ramp on the driver's side for my wheelchair, and need the extra space like a van accessible spot has. They were sending me to the far lot (Imagine, I think)that only has ONE, small row of accessible spots, and were attempting to place me in "overflow" - which is a regular parking spot and almost guarantees that someone would be parked on my driver's side and end up blocking my ability to load my wheelchair.  I went to Guest Relations - The first time I spoke to a CM and they assured me they would pass on my concerns; The second time, I spoke to a "Coordinator" - they assured me it would be sent to the appropriate people. Yesterday it was worse than normal, so I went to Guest Relations and asked to speak to a Manager - that got their attention. I ended up speaking to a "Leader", and she took my phone number and told me I WOULD be called back with a resolution!  Yesterday evening, I spoke with the GM of EPCOT! My situation had been discussed extensively, and there were looking at possible long term fixes (at which point I gave a viable fix - but it would require staffing changes, which can always be an issue). My suggestion was gladly accepted as a possible fix, and it WOULD be sent to the "right people" to see if it was the best fix - at least in the short term. Meanwhile, for the short term for me - my name and a description of my car has been sent to ALL the parking personnel to insure I have minimal issues with parking ... I am now in their nightmares, I'm sure.

Lots of changes are taking place at the ex-Downtown Disney - it's now Disney Springs and has a lot of new restaurants to try.

Sea World - Another of my Annual Pass locations. I have been there rarely, because of the HOT weather. There are few locations to get out of the sun and heat - unlike WDW. Now that the weather is changing, I will probably go more often.

Lowry Park Zoo (in Tampa, FL) - a VERY nice zoo with some interesting special happening. Well worth a visit - or multiple visits.

A New VA - Part 2

Neurology Consult - I'm only here to consult on your neuropathy, I need a new consult to deal with your other Neurological issue ... REALLY? I will deal with my other issues later, I guess.

I will condense the results of several visits and multiple tests:

EMG/Nerve Conduction Studies - slow conduction times and other equally bad results = mixed mode (affecting both the nerves themselves and the myelin sheaths), Sensory Motor (affecting both nerve types - sensory affects ability to sense pain, heat, cold, touch, etc,and motor nerves affect movement) PolyNeuropathy (affecting more than one nerve group - in my case a good deal more than one).

CT (with myelogram contrast in some cases) of my spine - Osteoporotic changes of my entire spine; lots of arthritic changes; NO disk problems - it's all bone issues; a severe narrowing the spinal cord channel in my cervical (neck) spine (myelogram shows it dents the dura, but doesn't impinge on the cord itself - a close call, since compression of the cord is a bad thing ... but it will probably happen in the future). Overall, There is a lot going on with my spine and it will only get worse with time ... that's life.

Lab work - a long history of B12 and Folate deficiency, so most of my neurological problems are probably related to SCD (Sub-acute Combined Degeneration).

Final outcome of the consult with Neurology - I am a high fall risk (that was already in my record); I have to - literally - watch every step I take when I am not in my wheelchair to ensure I have taken a stable step; Physical Torture (or was that therapy) to build up my legs some since I was in a boot for my broken foot for over a year; continue taking supplements. Basically, nothing new except a sort of diagnosis.

Endocrinology Consult - a lot of lab work; more tests; nothing really new learned other than my Osteoporosis is probably worse than they thought and I still have deficiencies that will continue to be treated. A lot of hmmm about the bad reaction to the flu shot while I was on active duty in the military - it MIGHT have been; MAYBE it was; your current neurological issue COULD BE related; etc. (all this about GBS/CIDP).

On a positive note, my broken foot has FINALLY healed (or as much as it's going to, anyway). The boot is off, but I still need to be careful with it; Compression socks are recommended; Podiatry is going to give me a pedicure (okay, they will clip my toenails) because my sensory nerve neuropathy makes it dangerous for me to do so; have a nice day ...

Next up with the VA - another hick up.

A New VA - Part 1

Moving to Kissimmee also moved me to a new region in the VA system. You would think that it would be straight forward since all my information is in the computer system. Nope; Not going to happen; let's reinvent the wheel.

I get assigned a new Primary Care doctor - It's up to him to refill my medications ... and to place consults with the specialty clinics I was seeing in the old region. I get in to see my Primary Care, and he doesn't refill all my meds (leaving out some of the important ones). He also fails to send ANY consults for Specialty Clinic followups that I needed. He did send me to Cardiology - which was a waste of time. Cardiology has already said they have done all they can do and it will take a life threatening event for them to do more.

I started the process of kicking him to the curb ... and what a nightmare that was. By going around some people, I did manage to get into one specialty clinic (Pulmonary) and the Doctor there sent out consults for the other clinics. Pulmonary also said I have, "Compensated Metabolic Alkalosis".

Neurology agreed to see me; Endocrinology declined the consult - REALLY? More on Neurology in Part 2.

I finally saw my new Primary Care - we seemed to click and he agreed with most of my requests - more consults placed and various test ordered. He ran out of time and scheduled a return vist with a 1 hour time slot.

Endocrinology agreed to see me after the second consults (and the test results) More on that in Part 2.

With a few exceptions, the Orlando VA is as good as the North Florida/South Georgia VA Region. It is disappointing that the different VA Regions tend to act as totally different entities. If something is ordered in one Region, you would expect it to get done in another Region without massive quantities of red tape, but ....

More on the local VA in another blog.

Moving along - and South

My Sister worries about me - which is a good thing. However, she really started to freak out after she started working for a new School District in Central Florida and was no longer around to "watch out for me" Having the broken foot and being placed in a wheelchair was something that disqualified me from independent living in her eyes. So, she insisted I move down South to be with her so she could keep me in line.

There may be a LITTLE truth to her viewpoint - it IS harder to live a "normal" life in a wheelchair ... BUT, it is done every day by many people. Could I live by myself - yes. Do I appreciate the help and love from my Sister? HELL YES! It does make life easier.

Sidetrack 1: That brings up a point that is being discussed in one of my online groups - what is "fair" when it comes to accessibility? When you see the following, which side would you see as fair and which side do you see as fair?

Some of you would say the left side is equal because they are all standing at an equal level and it isn't fair to give someone else a higher level to stand on;
Some of you would say it's fair for all of them to have the same viewing level;
I prefer to say the view on the right is not fair ... it's equal.
People with disabilities (in general) are NOT trying to game the system or gain an unfair advantage - they are just trying to have an equal access to life.

When I go to a theme park, I don't expect head of the line access - just the ability to access like anyone else. If it requires a special car or access line, that is NOT something special - it is just what it takes to level the playing field and let me into the rides. Still think I have an unfair advantage? I challenge any "normally abled" person to spend one normal day of their life in a wheelchair so you can see just how many obstacles there really are in life. Try opening those doors that don't have an assist or automatic opener; try getting around in that bathroom; try any normal activities and you will find something that makes it a lot harder on you.

Back on track: I now live in Kissimmee, Florida. A lot more people and traffic compared to the boondocks I lived in. With a little help from the GPS and a good deal of just driving around, I have figured out most of the short cuts (time and/or distance) to getting around this area. In a number of cases, I use toll roads to cut time from my travels even if it makes the total distance travels further - especially for my trips to the VA facilities in my area. I have even found some short cuts that don't show up as alternatives on your GPS mapping app.

There is SO much more to do in this area. Before it was an hour's drive to get to a limit selection of food or entertainment. Now it is just a few minutes to a vast selection of MANY ethnic restaurants; in 20 minutes I can be at Walt Disney World, with just a little longer trip to Sea World or Universal. Lowry Park Zoo is in Tampa - which is just over an hour away.

I have done MUCH more socially since I moved here in April than I have done in YEARS! Movies; Meet & Greet with friends; just get out and go ... Yes, I love it here. I DO miss the quiet, rural town life, but the pros outweigh the cons in my new life.

If you are going to be in the area, give me a head's up and I will try to give you suggestions about things or places to go.

A lot of catching up to do ...

A LOT has been going on in my life, so I procrastinated about my blog. Now it's time to start bringing it up to date. Instead of one huge post, I will be making posts that tend to fall into the same category:

• I moved to Central Florida = one blog will cover that and some of the changes it has made in my lifestyle;
• I am now in a different VA Region - one blog will discuss that and start bringing you up to date on some of the health issues I am having;
• The move brought me a lot closer to Theme Parks, so I will update you on some of those;
• There may or may not be a blog on things that fall through the cracks between those;
• Stand by!

If you have any questions about anything I blog about, feel free to contact me, and I will expand on the topic you want more information about. Questions about specific health issues; questions about the Theme Parks; questions in general - fire away.

and another update ...

The wheelchair cover came in.

As you can tell, it is a VERY tight fit over the footrests. The dimensions listed are based on a FLAT cover - NOT when over a wheelchair. There were some other minor details I was not impressed by, but over all, the price was right and it protects the chair, so ... .

I also purchased some reflective tape to put on the carrier, itself.

They are VERY bright in the daylight. At night with headlights shining on them it will make it impossible to say, "I didn't see it".

The wheelchair ... a follow-up

I have worked things out with the VA with just a little back and forth - they have ordered a spare NiMH battery pack. Two batteries will be enough to go a full day without having to turn off the power or end up with a dead battery and a long push back to the car. Thank you Mike at the Lake City VAMC Wheelchair Clinic!

I have a new cup holder that is MUCH better - and cheaper - than a typical Wheelchair Cup Holder.

TWO holders that will hold more than just a cup .... It can hold my umbrella!

I purchased mine through Amazon using the Amazon Smiles program to support Achilles International!

I am also getting a wheelchair cover to keep the weather and dust off the wheelchair while on the road.

The Wheelchair Carrier!

My cousin has completed my new wheelchair carrier. It is welded steel construction and mounts in my receiver hitch.

Ramp down:

As you can see, the wheelchair can easily roll onto the carrier in the folded position, and then is strapped into place. No lifting over a lip into the back or side of the car ... and NO stress on my injured arm and shoulder!

In place ready to drive down the road:

The ramp pins in place, and you're ready to go ... I plan on getting a grill cover to use as a wheelchair cover in case of adverse weather and will bungee cord it into place.

Better than anything on the market - and definitely a LOT cheaper.

Initial thoughts on Power Assisted Wheels

I had the first opportunity to give the Power Assisted Wheels (Quickie Xtender Wheels) on my new wheelchair a trial run - or three.

Saturday, March 7th my sister and I went to the Lowry Park Zoo in Tampa, Florida. I have to say that I REALLY liked the Zoo. All the staff were friendly and helpful. We decided to stay for the Zoominations after hours Chinese Lantern Festival, so I knew it would be a long day. I kept the wheels powered off a good deal of the time and my sister pushed me. On the uphill inclines and the rough boardwalk (VERY rough Boardwalk!), I powered up. The assist is REALLY amazing. With just a few fingers and a small push I moved up the inclines and across the rough areas. Even with my sister to assist and minimized use of the Power Assist, the small battery that the VA furnished was close to minimum charge at the end of our trip to the Zoo.

Sunday, March 8th found us at SeaWorld Orlando. It was VERY crowded and long waits in line were the norm. I thought it was because Lynyrd Skynyrd was showing, but once inside I found that it was a busy day everywhere - not just at the concert venue. Very little shade and HOT! I wanted to see how the battery would perform with minimal assistance, but we ended up with a short stay. A few hours of use had the battery down a fair amount, but I still was conservative in use.

Monday, March 9th I set out on my own at EPCOT in Walt Disney World. I planed on staying all day, so I tried to use the Power Assist only when needed. I also turned it off in crowded conditions. I made a few stops in the Future World area, and then headed off to "The Countries" for Flower & Garden (and the food). I spent 4 hours circling the Countries and headed back to Future World for a couple of rides and lunch. After a few hours up front in Future World, I headed back to The Countries for Dinner and to get ready for the Illuminations fireworks show. I spent a while checking out some of the shops, and then decided to eat dinner at The Rose & Crown Restaurant in "England". By the time Dinner was over, my battery was in the orange (last Charge Level light lit). Rather than risk having a dead battery and an uphill roll in the dark, I decided to head back to the car. By the time I had made it back to the car, the battery was almost dead and I was getting the "Low Battery" warning.

Overall impression -

The Good - Power assisted Wheels are a MUST for anyone in a wheelchair that has low upper body strength or an arm or shoulder injury! The assist on inclines and rougher areas in really something you need to experience.

The Bad - The NiMH battery is NOT for the active wheelchair user! It will NOT last a full day of activity. For someone that rarely gets out for a full day or has someone to assist for a portion of the day, it MIGHT be okay ... but.

There is a Lithium Ion battery available that has TWICE to capacity of the NiMH version and would be MUCH more appropriate for the active user. I am going to try to get the VA to upgrade my battery to one of these ... and try to get a FreeWheel.

Finally ... but!

Yesterday I drove to Panama City to pick up my wheelchair from a VA contractor. I could have waited until FRIDAY if I wanted them to deliver it ... I was impatient.

Team Adaptive is less than stellar. The people are friendly, but their final performance was less than stellar - The tires were inflated to 25 psi ... 65 psi specified pressure; The brakes were incorrectly installed; the battery was NOT charged; there were tie wraps still hanging from several places; NOT what you would expect from "the experts".

They offered to sell me a carrier - only $500 for a tilt rack or $1500 for an electric hoist version. Yeah, right.

The VA will be hearing about Team Adaptive ... .

The good news ... I finally have my wheelchair and my right arm can start to heal. Once it's healed, I can begin training on my racing chair again!

The chair ... it's purple! You can see how the brakes were not installed correctly - they are NOT supposed to angle like that.

 

Xtender Power Assist Wheels. I can take two fingers and push on a firm level surface!

The Right wheel also has the battery pack ...

The left wheel ... yes, I'm powered by Yamaha!

The cushion the VA provided is fabulous! it has Two foam components, a gel pad, and 3 pelvis stabilizers ... and is a pressure distributing cushion! Note the angle on the brake - can you tell that Team Adaptive REALLY pissed me off?

First impressions:

Power assisted wheels are FANTASTIC! They take a LOT of stress off of your arms and shoulders. They also assist on inclines. If you have an injured arm or a disability with decreased arm and hand strength, you REALLY need to talk to your doctors and see if you can get your insurance to cover a set of these wheels!

The battery pack - the VA was Penny Wise and Pound foolish. There were THREE possible battery packs - they choose the smallest capacity. For someone that mostly stays indoors, it would be fine. For someone like me that is trying to stay active, it it less than ideal. It is also a Ni-MH battery - which typically has a 1 - 2 year life expectancy. The battery packs aren't cheap and it will cost a lot to keep me in supply with a good battery. Even though it has a higher initial cost, the Lithium Ion battery pack has TWICE the capacity (10 hours of use vs 5) and a slightly longer life expectancy - which would make it a cheaper choice in the long run.

The cushion is far better than I expected to get. I have NO pressure points sitting on it - something EVERYONE sitting for a long time needs to worry about! Good call, VA!

The chair is an ultralight Quickie 2, BUT the Xtender Wheels add a good deal of weight. It is NOT something I want to lift in and out of a car without using the quick disconnects to remove the wheels and lift each component individually.

I have a cousin that is a welder, and he is going to build me a small rack that will allow me to roll the chair onto the carrier. It will mount in the receiver hitch I currently use for my racing chair carrier. I'll blog about the rack when it's ready.

WTF, VA, WTF!

October, I get told I need to be in a wheelchair;

December, I FINALLY get into the VA Wheelchair Clinic;

I get read the riot act because I waited so long to get a wheelchair!;

I am told 6 weeks, with 3 to 4 weeks being typical times to get a wheelchair;

7 weeks later, I am told their were some technical issues, but they had been straightened out and I would get my wheelchair in 1 to 2 weeks. ...

We are no 12 days later, and since I had heard nothing, I contacted the VA ... again.

The actual order wasn't sent to Sunrise Medical until LAST WEEK! It may take up to another 5 weeks for my wheelchair to be delivered!

MEANWHILE, my tendonitis is getting worse; me arm is in almost constant pain; just typing this blog is painful!  People in the VA have dropped the ball - BIG TIME!

WTF is going on with these people? It's great that I'm getting a good wheelchair (maybe), but 4 months of delay with constantly worsening injuries is NOT shining a good light on the VA.