The Author's Head's up: “This’ll be a long one…Visine anyone?” :-)
So the big question for me now is, where do I begin? I want to first share that there is no definitive reason for my “radio silence“, but there have been a variety of factors that have played a part in it. Most of those factors have to deal with my strength and Constitution, as well as, not being at the computer at the right time when I feel strongest and most willing to converse. Of course, had I brought my mini-handheld voice recorder, then I would've been just fine because I could have shared all of my thoughts straight on the tape and then simply played the tape back with the computer cable plugged into the headphone-out and, voilà; the majority of my words would have appeared scrolling across the page. Twas not to be though, so I shall continue... sigh.
(Just as a side note, in case you find any spaellingg airrors or you find a word that doesn't make cents with the sentence, sound out the word and you'll probably get the idea of what I had wanted computer to write instead of what it wrote) ha.
Before getting into the particulars on specifics of our trip to Orlando, I want to share that both CC and I agree that the conference, beyond a shadow of a doubt, facilitated in changing our lives. Not just from having an opportunity to speak to and hear from the doctors who are specifically and actually focusing on the different types of periodic paralysis, but more importantly the relationships that became cemented upon meeting other members of the periodic paralysis list and hearing their advice and their suggestions and their encouragements and feeling their support of us; of me specifically as well as CC specifically and the kids and us as a family. If I look beyond this, I concede that the impact was huge on both of my parents who traveled to Florida with us and attended the conference as well, and my aunt Judy Clark who traveled with us to and from and was a supportive trooper from beginning to end; she also attended every day of the conference, and I believe every session within. An avid priceless blessing to the trip was that my cousin Montaigne and her husband joined us at the hotel for the conference and we had the opportunity(and took it!) to spend nearly every day catching up enjoying one another's company. It had only been a couple years since we had seen Monteeen and David when they came out with their son Jacob, San Francisco and then Old Town Sacramento. We had a wonderful visit with them then, but it was all too brief and we hardly really had time to sit down and talk leisurely, so when Monteen shared that she and David wanted to join us at the hotel for the conference, we were thrilled! Then, to add blessing on top of blessing, my cousin Val and her husband Ron and their nine children came to the hotel and sat with us down by the pool for an hour or so, on one of the days, and then we were all able to go out to dinner together. They also met us at the beach on Wednesday late afternoon and we all had a blast together; each of the kids that were able to come with her (5 of them) played with Missy and Josh in the surf and even showed both Missy and Josh how to boogie board, East Coast style! :-)
Without question, my children have new friends for life that happened to be their cousins, third cousin to be precise, I think... anyway both kids were just thrilled to have met their cousins and met the family that was available to see us and even felt very good about the conference and what they learned as well, though I expect if you were to ask them what their most favorite part of the trip was they will probably tell you being able to hang out at the giant pool and lay in the sun. It was excellent.
Okay, now to share some more of the specifics of the trip, and I guess the best place to begin is last Thursday morning and go from there...
Thursday morning began at 3 AM; after getting about two hours of sleep, CC and I got up and began the quick load and pack into the Van, including children, so that we could head out for the airport by 4:00 AM. Though we left at 4:15 AM, we made it to the airport in reasonable time and managed our way through United's baggage check (each piece of checked baggage was a separate cost…thanks SO much United) and then through security and then on to the plane. I drove my chair right up to the gate and we waited for the pre-boarding to begin and then I rode my chair all the way down to the plane entrance, where I got up from there and made my way into the plane via cane and a stable arm and found our seats.
So we chose to do brief layovers both going to Florida and returning from Florida. Our layover on the way to Florida was in Los Angeles, and then on our return flight from Florida, we changed planes in Denver before continuing on to Sacramento. Now as far as the flights go, we paid for and expected what United calls Economy Plus which I don't think is very much more than getting an additional 5 inches of theoretical legroom. Being that you have to stow your carry-on baggage above you and below in front of you, if you, like we did, have two pieces of carry-on each, then one goes up in the luggage space above the seats and the other goes down below the seat in front of you, rather effectively taking up the approximate five extra inches of legroom and returning you to what is essentially glorified “cattle class”. Our flights to Florida were reasonably uneventful and not very noteworthy, with the exception that we learned that flying United's Economy Plus felt exactly the same as flying United's Economy or “cattle class”. So the first observer would look at this and say “…well then you should have checked your other baggage and only had one carry on to take with you…” which would've been just fine with us had United not be charging for each single bag you check and there were no options for us to minimize what we needed to take. Specifically in my case, I was bringing my laptop, which is unquestionably a carry-on, and I was also bringing in oxygen concentrator which is literally about the size of a car battery, only it comes in a blue canvas case attached to a mini, unit designed collapsible hand truck. Add to that my green bag which carries my medicines and my identification as well as our backpack that contained food, medicines and books etc., and you can see our situation; each of the kids, as well as Aunt Judy, all had carry-ons they each had to manage. Easy solution? Stop freakin’ charging people extra to check their luggage, United!!!
Okay, moving on...
so I don't really remember much of the details regarding our flights out of California because I had taken medicine to help me rest and hopefully avoid any hits/attacks while in transport. Fortunately, there were no hits during the travel out to Florida and we were very encouraged by this. Actually, the only issue that I had, in terms of going to Florida, wasn't even attack related, it was actually when we had arrived at the Rosen Centre Hotel; I was disembarking from the handicap van we had rented and we were unfamiliar with the seated, height clearance levels, being that when we were riding in the van, I actually stayed seat-belted in my chair, with my chair secured to the van floor. Anyway, upon exiting the van and rolling my chair out on to the side lift, the chair kicked forward and I nailed my head on the side opening of the van, snapping my head backwards into the headrest and then bouncing forward, being restrained in the chair by the seatbelt. I was knocked for a loop. Now that I think about it...I probably shouldn't even wonder why if I'm not remembering much of that part of the trip, should I? Needless to say, that did not happen again, nor did have a chance to happen again because each and every person who witnessed me in the process of going into or coming out of the van all reminded me to “watch my head and be careful”, all of which was received in the spirit it was given. The cool thing was, I woke up the next morning without a bruise and just a minor headache and by all rights I should have had quite the conversational souvenir from my head's collision with the steel frame.
Next up is my review of the Rosen Center Hotel, where we stayed for seven nights was the location of the Periodic Paralysis Conference. I should note off the top, that the hotels median price for a room with two double beds or a single king bed generally about $300. Thanks to the work of the Periodic Paralysis leaders, and the cooperation of the hotel management, the hotel lowered their nightly rate, for attendees of the conference, to $99 plus taxes. We went with the understanding that the hotel is a five-star hotel and, as such, the lowered rate is exceptional. Upon getting to the hotel and checking in, we realized that we had not really done our homework on the hotel, other than looking at their webpage in an “overview” type manner and verifying the general room prices and such. I'm sure you can probably guess where I'm heading with this and that is that the five-star rating is more so according to the hotel itself than public opinion or travel agencies and travel sites. As I began to look at several of the Internet booking sites, such as Travelocity, Expedia, Hotels.com, 1-800 hotels.com, I found that be reviewed ratings published for the Rosen center Hotel were between 3 and 4 stars, with the majority down towards 3 and 3 1/2 stars. I would have to say that, overall, our stay was around a 3 or 3 1/2. If you wanted to use the hotel's Internet service in your room it was $10 for 24 hours. If you wanted to use their exercise room it was a minimum of $10 per person per day. If you wanted a refrigerator (we needed to keep my drinks and food refrigerated during our stay so there was not much of a choice) the cost was $12 and if you want a microwave oven in your room that was an additional charge as well though I don't remember to me how much. During our first nights stay, we had not gone grocery shopping at and I needed something to drink so one of the kids went and got a small bottle of water, approximately 4 ounces from the soda machine at the end of the hall, and they paid a dollar for it. At another point, my wife went down to the deli asking for quarters so that we could do our laundry upstairs and she had to talk to the person behind the counter into giving her the change she needed because the policy of the hotel, it would appear, is that we were to use their laundry service instead of using the laundry machines. The hotel contains a restaurant or café three different types of bars including a sushi bar as well as their own deli... if you wanted a plain hamburger on a bun it cost you $15. The bottom line is to do the homework and find out it you are going to be billed via an “à la carte” approach or not.
So, having said all of that, I'd also like to share that the hotel, in general, was very well maintained in the public areas; no obvious stains, no dirty windows, no dust, cleaning staff was constantly cleaning tabletops, chairs and seats and they always asked if we were enjoying our stay. We had a few experiences where some of the hotel staff actually went out of their way to take care of a request of ours, which we greatly appreciated. It is also worth noting that the deli as well as the restaurant did what they could to accommodate our dietary constraints; my constraint is an exceptionally low salt diet as well as low carb. My aunt's dietary issue deals with needing her foods to be gluten free and in many ways is much more restrictive than mine.
Now, regarding the purpose of our trip and the primary goal of going to Orlando; the Periodic Paralysis conference itself: the conference and Saturday and Sunday but also included a greeting time on Friday evening for the attendees to meet one another and finish up any conference registration issues and also sign up for a blood draw appointment. I don't know how to describe how I felt when I first recognized the names on the nametags of the different people that had come that Friday evening. These are the people, many of whom, I have corresponded with via the HK PP list serve and only imagine what they would look like. Some of them looked nothing like what I thought they would look like while others looked similar to what I expected. As a result of the weekend conference, I am proud and happily encouraged to share that my extended family has now grown significantly because these folks and I can solidly relate to each other, and there is no question that most all of us truly care about what happens to each other and what we go through. Okay back to the conference: Actually, there was a session on Friday evening, at the end of the meeting time, where we could listen to a doctor who has designed a software for the diagnosis of neuromuscular diseases and related issues. Though the software is primarily focused and available to medical professionals, I would imagine that it could be a very helpful tool for those who are seriously searching to find out what it is that is going on, or better said what isn't going on correctly, with their body. I certainly plan to make my primary care physician aware of this software for his consideration.
For me, Saturday and Sunday were huge days, but, in my case, not so much for what I learned from the different key speakers, but because of what I learned from the other attendees. There must've been a dozen of us that had attacks on Saturday and again a dozen or so on Sunday, and Saturday was the very first day that I watched another human being suffer the same kind of attack that I have been suffering for several years and more drastically for the last three years. I saw some attacks that I would consider to be very mild and I saw other attacks that looked more vicious than most of mine. The conference planners were prepared for the attendees to have attacks; both Saturday and Sunday we had two paramedics sitting in the back of the room, for the entire conference time, helping to carry and care for those of us who went down. They also prepared a rear corner of the conference room with laid out towels, pillows and blankets so we would have someplace to go and not have to leave the room during an attack. They also had a person or persons videotape nearly all of the attacks so that these videos can be edited and then posted onto the Periodic Paralysis website for people to see in hopes of helping them determine whether or not what they are experiencing is similar or same to what they are seeing in the video, thus giving them a solid direction to pursue and investigate with their doctor.
Both of my parents took serious notes all weekend long along with aunt Judy and most certainly CC. I would have as well had I not suffered medium sized hits late Saturday morning and right after lunch on Sunday…
… to be continued
well, I'm going to have to post this as is for right now and will continue, hopefully tomorrow, with more of what I learned and experienced over this past week and earlier weekend. Consider this as part one either to or probably three posts. I began this yesterday,, and it is now 10:45 PM on Monday night and I is tired. More to come...
peace-
