It’s Sunday, October 18, 2009 and...(pt. 1)

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-

Leaving for the airport

Leaving the hotel for the airport...

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Dinner out near Daytona Beach...

La Familia just outside Daytona Beach. A mini-family reunion; my family (my parents and the 4 of us) with 2 of my cousins and their families (though not all of their kids could be here for this pic.).

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Well, here we r in

Well, here we r in Orlando; over 5 hrs in flying time. Everything has made it through, from what we can c.
More later-
w

Sunday was and went

 

Missy didn’t sleep good Saturday night so we had her stay home and Joshy went with CC and me to 11:15 service at Capitol Christian enter.  I am able to tune into Pastor Cole’s messages and style of conversed delivery; it just works for me, as well as for CC.  Pastor Cole was particularly passionate this morning and there was much to be learned for those who have ears to hears…

Right as we got to about 12:30 PM, I became aware that I could not move my feet, toes, legs or even knees, and subsequently realized that I had been holding my breath for long periods of time, something I tend to do subconsciously when I am experiencing unrelenting pain.  Right about then, CC leaned over to where we could see one another and we began to exit successfully.

Getting into the van was a little bit of a challenge but with a little cooperation from my end, it went smoothly as was feasible.  During the ride home I was noticing a slow increase in symptom, though I had already taken my liquid Potassium (Liquid K+).

Nothing else really transpired from the hit.

Eyes are 2 tired 2 continue…….

 

Difficulties

 

It’s been quite a while since I posted and, unfortunately, that has been due to daily attacks for the past 12 or so days.  I did get a break for about 48 hours this past week on Wednesday and Thursday, but Friday’s attack was savage and hit me while I was home alone, again.  This hit was harder because both my legs began to experience muscle spasms AND cramping simultaneously, confining me to my black chair.  CC was at Joshy’s school when it hit and she came home in a manner of minutes, but the nastiness had locked on and began to claim other muscle groups as I began to battle the fear of not knowing what was coming next and knowing I was by myself and that Annie was not crated which would have been problematic had I called 911.  The attack lasted for 45 minutes to an hour; brutal cramping in my calves and abdomen , spasms eventually everywhere else and lockjaw to top it off.  It’s been a very long time since an attack brought tears…

Today I spent in bed for nearly the whole day and could only walk with the use of the walker, and even that was a snail’s pace.  I demanded of myself to go and up and down the stairs a few times in order to push oxygen back into the muscles, knowing full well that it would be painful and slow, but I did it…granted, a couple times I needed CC under one arm to make, but I STILL made it.

I have NO idea what set it off, no clue at all.  Those attacks are the ones I fear the most, I guess, because when the attack begins, I normally run my immediate history back through my mind and can normally see the trigger in hind sight, but with these attacks, it becomes an endless mental search that eventually exhausts me from the inside out.

You know, now that I’m thinking about it, those of you who read this via Facebook should know that these posts or “notes” are coming in directly from my blog entries at http://theaudiopilotsblog.blogspot.com

I’m considering closing the link between my blog and Facebook because much of what I’m sharing is exceptionally personal and Facebook by design, is not and I’m feeling like I’m sharing too much to too many people in such a general manner.  I’m thinking that if anyone wants to read the blog that they can simply go to the blog and check it out instead of me linking it to Facebook and leaving it “out in the open”, so to speak, for the casual Facebook reader.  My intention is to use this post as an open invitation to anyone who is interested in my life or my terminal joust with this rare disease, to go to my blog, http://theaudiopilotsblog.blogspot.com and read all you want and have access to all the previous blog entries as well some pics that are not on my Facebook profile.

Well, that’s it for now.  Praying for a better tomorrow/today (Sunday).  peace-

Long harsh attack this AM.

Long harsh attack this AM. have been down for the rest of the day...

Sunday, September 13 Re-cap…

 

I'm impressed with myself that I'm writing this long before the wee hours of the following morning... I hope this font doesn't bother you; I'm liking it at the moment.

At exactly 1:30 p.m. this afternoon 15 years ago, Melissa Mae Odum was born in Redwood City, California. Her day today was celebrated one day early with having four of her close girlfriends surprise her for an overnight stay and celebration here at our house. I guess the only significant bummer from yesterday as it would pertain directly to Missy, was that she had to run 10 miles that morning so she was very tired come the afternoon and a bit more low-key and less hyper than she might have been otherwise. Unknown amounts of caffeine later in the day, found her still awake this morning around 5 AM, the final of the four of them to fall sleep. She then slept until 10-ish and was up and going before I was (I woke up at 11:48 AM!).  The girls decided that they wanted to go and see “G-force” at a 1:50 PM showing, so we all loaded up, including my motorized chair, and we headed out for an afternoon at the movies. I have learned from the past that sometimes going to the movies can be problematic for me, whether it's because of the stress in the movie or because of the temperature and climate change; going from an air-conditioned building out into hundred-plus degree heat. Fortunately, today's movie was not very stressful (I mean, we're talking guinea pigs here) and on exiting the theater, there was literally no difference in temperature from indoor to outdoor, so I escaped my known two primary “going to the movies“ issues. I did learn, unfortunately, that there is a third issue for me to consider, but that would not just be from going to a movie per se, it would apply to any period of time where I would be seated for more than an hour at a time in the chair. The third issue? Do not begin to assertively stretch immediately following a long, seated period of time.  Exhibit A.: Before getting into the van, following our exit from the movie theater, I chose to do some leg and abdomen stretches before getting into the van; I was in error. Very shortly after having started the stretching of my calves and my abdomen, what first began as flutters quickly turned into spasms across my waist and my chest; the process had begun. CC and Missy helped get the liquid potassium into me and Joshua stood beside me holding my hand and encouraging me to squeeze his hand as I needed to in order to release the pain of what was going on. It did not take long for my body to go into full paralysis which was very awkward for Missy's guests who have joined us to go to the movies and had to watch all of this unfold. As we began to drive and take the girls home, Missy became my support; holding my head and my shoulders against the seat so that I would not end up ricocheting around in the front seat, during turns and stops and starts. I became infuriated with myself that this had happened on her birthday, in front of her friends, and as a result, most of the car ride home she spent in tears, resting her head against mine and quietly reminding me and encouraging me to breathe deeply and not to panic. I could do nothing to reassure her or comfort her or stop her tears until my body settled down after the potassium had fully gotten into my system, which was after the final girl was dropped off. Needless to say, it made for a very quiet ride home.
*Sigh*

CC and Missy helped me get into the house and into my black chair where I stayed for the rest of the evening while the three of them went to a roadhouse steak restaurant here in town for her birth day dinner. It's just not how I wanted the day to go or end up but there's nothing I can do to get it back or to change it and moving on is the only option. Missy, like her father, mother and brother, cherishes family and family time and, once again, thanks to a debilitating disease, we are forced to adapt our intents and our desires to the realities of minute to minute -- day to day life as filtered by HKPP. Some elements of that look a lot like the beginnings of a pity party and, perhaps inside, maybe that party is actually going on but in an underground sense; something that I need to battle and excuse myself from on my own, but there is a truth to it as well and that is that perhaps I need to be more considerate of others and my family in terms of participating or becoming involved in functions that may radically change if I suffer an attack, and by radically change I mean that some, most or all involved are negatively affected by my attack.

Tomorrow is Monday, a new day and the day that I can and may rest and recover; all I have to do is choose to do it, and if I am at all honest with myself and most all of you, I'll have to confess that choosing to rest and recover just isn't as easy as it sounds or as I want to be sometimes.

As I remember whispering to Missy while we were driving home," I'll be okay; I will get better, you'll see..."

From Tuesday through Saturday

It seems that I've gotten caught up in the new speech recognition software and have blown about 45 minutes just playing around. Sigh.

Today is a new day; in its newness, one can find hope and encouragement and even refreshment should they choose to seek it. I must confess that having gone nearly 6 days straight with attacks each day, and yesterday having two attacks in one day, I'm finding it difficult to put the energy into searching for anything at the moment. That having been said, what I don't want this entry to be is a pity party or a lamenting how life can suck at times. What I do want this to be, however, is a general recounting of the last five days or so. I believe my last entry into the blog came Thursday night following a hellish day. Anytime you see a blog entry that's only got a couple lines of writing in it then I have sent that posting from my cell phone, likely either from my bed or my black chair downstairs. Most often, I use my cell phone to post a blog entry when I do not have the strength to get up and walk to the computer.

So where are we? Yesterday was Saturday, the day before my daughter’s 15th birthday, and the day came with two smaller sized hits, both of which landed me in the black chair with oxygen and the latter of the two hits found me leaning my back against the wall with my knees locked in an attempt to keep from falling and my wife in front of me with her arms under my arms, holding me up until Missy could come downstairs and help. I don't know what triggered either one of these hits, but I did have a gut feeling when I woke up that I was going to take a hit at some point during the day; under these circumstances, I do not enjoy being right other than to take confidence in my gut feelings. One attack happened in the midmorning and the second attack happened in the early afternoon. Though it has nothing to do with me, I'm very proud to share that Missy ran 10 miles today in an effort to raise money for her school cross country uniform and she ran most of the way but he regardless of speed, she finished the race on her own and I could not be more proud of her. My heart goes out and thanks to those of you that were able to support her in her pledge of running the 10 miles; thank you.

The day before yesterday, Friday, Missy had a track meet in Oroville and was gone for most the whole day. Upon returning to the school around 7:30 that night, Joshy, CC and I picked her up from school and drove to her current favorite restaurant, Denny's for an informal, celebratory dinner. By the time it was ready for us to order, I had read through their nutrition guide front to back and realized that there was nearly nothing I could eat; something I had suspected but did not know for sure. I went for the safest dish that we could think of; planes scrambled eggs and playing hashbrowns. All of us were pretty hungry, me included, so when the food came I tried a couple bites and waited for a minute or two to see if I would have any immediate reaction. Seeing no reaction initially, it did not take me long to finish off my plate of food, but, right about the point when the three of them were finished with their dinners, I was having a difficult time thinking and speaking.  Most of us with periodic paralysis refer to this experience as “brain fog”, a typical precursor to an attack. If I recall correctly, both kids helped me get out to the car while CC took care of paying the bill and then we drove home and CC and Missy help me get up the stairs and into bed. I do remember that my job was locked and I was panicking because I could not open it myself, but CC applied in the end downward pressure at the base of my jaw which released my tongue and clenched jaw. After a cocktail of liquid potassium and apple juice, along with my nighttime meds, I waited for the pain meds to kick in and hoped that I would escape my body's retribution in the morning. No such luck. I realized when I woke up Saturday morning that my jaw was very, very sore and somewhat puffy on both sides; I figured out fairly quickly how to be able to maximize my verbal communications with minimizing my mouth and jaw movements. Yogurt was for breakfast.

Thursday's attack was ugly. CC and I were on our way to our PT appointment that morning and on our way there, CC, along with the pickup truck behind us, decided to change into the same lane at the same time. Our vehicles never touched each other, praise the Lord, but there was some swerving and screeching of truck tires and my body locked up. CC told me that after we had arrived in the parking lot for PT, she gave me some liquid potassium and shortly thereafter Mark came out with one of their rolling office chairs and the two of them got me from the van into the building, up the elevator and into their office and then into one of their private rooms. I have a vague recollection of the symptoms mellowing out until my chest got cold at one point and the chills began, followed by more spasms, cramps and muscle locks. I don't know how long this lasted nor do I remember much of anything after that. I understand that they got it back out to the car the same way they have brought me in and that when I was still in the office, she gave me another dose of liquid potassium which eventually mellowed out spasms and cramps. I spent the rest of the day and evening in bed and I'm not able to remember much else. Obviously, I did send from my cell phone while I was in bed; good for me.

Wednesday was Missy's Back-To-School Night and, though I have a small hit in the afternoon, the evening came out fine while we were at the high school. I am so very thankful that nothing happened to me while we were there: that would've been terribly awkward for Missy and I would've felt like trash. A borderline, small hit began on our way home from the Back-To-School Night but it did not fully manifest and I was able to get away with just taking my regular medications going to bed.

I'm kind of fuzzy on Tuesday night’s hit, but I do recall talking with CC about it and we both felt that it was a combination of three things; emotional stress, higher sodium count dinner and being physically wiped out. Unfortunately, any one of these three can be a trigger in and of itself, so after-the-fact, it was not too hard to figure out.

Okay, it's 3:17 AM and I really need to stop and go to bed now. Once again, I am so grateful for this software (may God thoroughly bless you Greg) because without it I would not have been able to have posted this blog. I also just thought about this; I can't remember if I included this in a previous blog, but this software also played a critical role in my getting help a week ago Thursday, I believe. My body had gone into nearly full paralysis during the time which I was posting to the blog and that blog entry actually depicted what was happening to me before most of the rest of the things went South. Because I still had the headset mic on my head, I was able to use the software and my right index finger to be able to send two e-mail text message to CC, for her to come home from a coffee meeting she was having with one of her good friends, because the symptoms were getting worse and the attack had begun. For whatever reason, I did not have my cell phone on me and thus was not able to speed dial her, which I have done in the past. Had it not been for the software, things could have been quite bad. My buddy Scott Shuford called tonight and he suggested that I share this experience with the makers of Dragon NaturallySpeaking as a testimonial; as per usual, I think he has a very good idea.
Okay, it's 3:26 AM now. I'm done

 

Hard day: attack on the

Hard day: attack on the way to PT. Lasted an hour. high price today...will see about tomorrow.