A Long overdue update

Medically, a LOT has happened. I had numerous tests and saw a LOT of specialists and finally have some answers.

The Superior Vena Cava Syndrome caused Venous Hypertension. The Venous Hypertension caused decreased blood flow to my cervical spinal cord AKA Ischemic Spinal Cord. This is not a good thing. In other words, I now have a damaged Cervical Spinal Cord be cause the decreased blood flow was low enough to limit oxygen levels in my Spinal Cord.

A Neurosurgeon studied the CT Myelograms and said it was worse than previous thought - I have a Spinal Cord impingement at the C4-6 level AKA a Spinal Cord injury. In a meeting with him, the Chief of Neurology and a few others, it was determined that I had Guillain-Barré syndrome due to the Swine Flu Shot while in the military and that I now have Chronic Inflammatory Demyelinating Polyneuropathy - or maybe it’s Progressive Axonal Sensorimotor Polyneurpathy. Regardless, everything added together translates to me being an asymmetrical quadriplegic.

Meanwhile, I have had a major falling out with Disney. Due to their Not Give A Shit attitude about a very important matter to me, I let my many years of Annual Passes lapse and haven’t returned. You know what - I haven’t missed it.  

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".