The accounting of the past week and a half, or so...

Wednesday, June 18, 2008

Greetings all, It's been several days since I have posted; it seems that I find myself apologizing for not keeping this as current as I would like. The challenge is that the attacks have been more frequent, which means the recoveries have been ongoing and I find I spend much more time in bed or on the couch than I do sitting upright in looking forward to writing things on the blog.

It was recently suggested to me that this blog will prove instrumental, If not critical, to my future care as soon as I am able to find a physician familiar with this disease and active in caring for it, being that this blog is kind of my case history, autobiographically. That being said, I was encouraged to be as detailed as possible regarding the attacks, the recoveries, etc., so that the doctors will have the most information available to them for their use and study.

Okay, having said all of that, I unfortunately cannot be terribly clear over the past 10 plus days since my last blog entry. But as I recall, the last entry included information regarding five attacks out of seven days and then the following week there were four attacks in seven days, but those four attacks were particularly vicious and each one was a degree worse than the one preceding it, culminating with an attack on a Thursday, which hit me during the daytime and the attack lasted hours instead of minutes. Once again, that attack included paralysis and an increased difficulty in breathing and sharp chest pain. When it gets to the point that I can't breathe, I begin to panic, regardless of what my brain tells me that I will be okay and that people are there to help me. The lack of the ability to breathe comfortably creates a panic within me that I just have to ride out.

I am seriously blessed that CC is generally always here during these attacks, and she helps me to breathe by talking to me and encouraging me. Most of the time I can remember some things from or during an attack, but it is normal for me to not remember the whole attack because the brain fog that accompanies the attack can be pretty thick.

We are praising God, that we have been given oxygen to use here at the house, because it has made an instrumental difference in my recovery from the attacks as well as keeping my head clearer than not, during the day. I guess the harder part of having the oxygen is that the nurses have suggested that I remain on the oxygen as often during the day as possible. My right lung is not as strong as my left; I'm not sure specifically why that is the case, but, as I understand this disease more and more, some of the answers lie within the understanding of the disease itself and how it progressively battles the body on a minute by minute basis. Bottom line for me, is that I have decreased use of my right lung which makes it difficult to breathe deeply, properly and effectively, especially when it comes to getting through the attacks. The use of oxygen is pretty important in my case, and I'm taking that very seriously.

To take a break from accounting for my days, I must share that my life, right now, is surreal. In so many ways, my life was somewhat surreal when I had my job at Menlo Park Pres. as well as having my job at Fair Oaks Pres, in that, God blessed me with two awesome jobs, working with incredible people and being in a position to make significant, if not life-changing church improvements, regarding their technical capacity and products. From 1998 until sometime in 2006, I was blessed with the opportunity to work with interesting, caring, brilliant, loyal and loving coworkers and fellow employees. Even just one of those attributes can be difficult to find in today's working world, yet I was blessed with all of them during my tenure as a Chief Audio Engineer and Director of Media Technologies. I am reminded of the challenges that all of that brought, along with all the rewards; always a matter of checks and balances in one way or another, and to me, that in itself was pretty surreal. Flash forward to now, from 2006 through till today, Wednesday, June 18 of 2008, this disease (HypoKPP), in coordination with other medically contributing factors, such as hyperaldosteronism, type II diabetes, Hyperphosphatemia and the un-known issues with my liver, find me living a surreal life, though 180° from the life that I lived the previous 8 to 10 years or so. With that change comes the inevitable exchange or loss of contact with former colleagues and friends, to some extent. Only occasionally do I find myself hosting or posting a pity party of such a nature, because God has blessed me with the most supportive and incredible family a man could ever, ever even hope for.

I am blessed, regardless.

So, where was I before I digressed as noted above? I guess I was thinking of the differences between life before the diagnosis (and the multiple attacks preceding that diagnosis), and life as I know it now, which includes nearly daily attacks of paralysis as well as muscle spasms, short term memory loss, etc..

So today is Wednesday, which means that this past Monday preceding, was an unpleasant lengthy attack; painful paralysis as well as spasms. To get to the bathroom and back on Monday night included the unquestionable use of the Walker. Tuesday brought an opportunity to go to physical therapy and have Mark McCoy work on my muscles and help me stretch. My aunt brought me there and I used the Walker to get in and get out. Moving very slowly as to cause the least amount of pain, and not trigger any other issues (it's like walking on eggshells in some ways, keeping a constant fear in front of me that if I stepped wrong or move too quickly, the façade of being independent and mobile could come crashing down at any point.) I stayed on the oxygen for the visit, which was very helpful in keeping my head clearer and helping me to breath. I slept when I got home from the appointment for approximately 4 or 5 hours, sleeping with minimal pain on the couch. CC woke me up to let me know it was time to go to bed, but Missy wanted to watch one of the movies that they had rented so I watched the movie with her as kind of a daddy / daughter date time while CC went up to bed and Joshua joined her so that he could have some time with mom.

I woke up this morning feeling far better than I did yesterday and I am able to walk with only the cane instead of the Walker. I have no doubt in my mind that I am walking this well, and feeling as well as I am, thanks to the work that Mark did yesterday. I am scheduled to go back to Mark tomorrow (Thursday) and CC is planning on taking me there, though, we will have all of "our" kids with us, which means we will have Jessica and Jayden along with Missy and Joshua, so I am trying to figure out how to be creative and occupy the kids time, so that CC can also have some deep tissue massage done by Mark as well.

We will just have to see how things turn out.

I'm going to include in this entry, an e-mail that I sent out to the list of periodic paralysis people who I can connect with on a weekly basis, sometimes. It is an e-mail list made available through the Periodic Paralysis website and the list includes people from all over the country as well as some folks in Australia and England; all over the world, I suppose. This e-mail list has been most valuable to me in my learning and understanding of this disease, so when I learned some information that I thought was sure would be beneficial to others on the list, I put an email together and sent it off to everyone. Shortly after its posting, I received several e-mails of appreciation; each explaining how the information in the e-mail helped to tie up loose ends for them, which was exactly what happened to me as I learned the information. So without further ado, here is that e-mail:

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Greetings all-

The last number of weeks has been challenging ones for us. Last week alone, I had attacks five out of seven nights, though none of them landed me in the ER out of our choice to just treat it at home.

Since my last contribution/inquiry of the listers, my doctor approved home health care for me, for a period of time. It started out with nurses coming three times a week to where we are now, which is once a week; they come to the house and draw labs, they assess my condition, and they direct us in our immediate care of my needs.

It is because of one of these nurses that I wanted to write you all and share with you some of the things that I have learned. So here is what I have learned:

1. Nausea/Mucous: I have been experiencing nausea on a daily basis now for roughly a month and a half and we have tried to treat it with different medicines that help with upset stomachs, including Phenegran, but I have learned that the nausea only goes away for a brief period of time and then returns. The nurse explained that when the body has a potassium dump or Spike, it creates mucus in the stomach lining and the intestines to protect the walls; it goes into auto-defense mode, trying to guard itself against issues that would happen due to the potassium change. The production of the mucous upsets the stomach and can cause cramping as well.

2. Chest congestion: as we deal with this disease, our lungs take a fair hit from our lack of exercise as well as the build up of the mucous in the system, creating chest congestion as well as increasing our susceptibility to bronchitis and pneumonia.

3. Intestine sluggish/long periods in the bathroom: it takes muscles to push the food through all of the intestines as well as to avoid it out of the body and it is not uncommon to have the muscles around the intestines not behave as they are supposed to, creating blockages, constipation, etc. this is been a challenge for me, leaving me in the bathroom alone to try to figure out what the issue is causing this to take so long. I'm sorry if I'm giving you more information than you want, but, I was hoping that some of this may help to validate some of the things that people on the list are feeling or experiencing, like me.

4. Cold sweats: the cold sweats, we have always thought was directly related to what food I was eating, how much salt intake. It had, sugar intake, etc. the nurse explained that the cold sweats are in immediate indication that your body has just dumped some potassium and your body is reacting to that potassium dump. It is also par for the course to have that when you ingest liquid potassium or if you take several of the supplements at one time, you can experience the same thing, but it would be a period of time after those supplements have gone into the system. I deal with these every single day, probably like some of you do.

5. ER: One of her last pieces of advice was that when I start to experience brain fog and cold sweats and/or weakness in combination with those, to call 911 and get into an ER and establish another ER pattern to raise awareness within that system that I need better care than I am receiving. She suggested withholding the doses of potassium until in the hospital so that the labs can be accurate, instead of taking labs after I have already had an increase in potassium from home. My wife and I are still talking about this last one, because that impact of going in is not just on my wife and me but also on our children and her work.

Oh, I did also want to share that I was given software called Naturally Speaking by Dragon software, and this software allows me to use a headset mic and speak my e-mails in my blog entries into the computer and not have to type. Nearly every command in using the computer once it has booted up can be done via voice. And this software has been a huge blessing to me. Especially on days like today, where my arms and muscles feel beaten and sore from the previous night's attack. I would strongly suggest it to anyone on the list. If you read my e-mail and some of the words are out of place or odd in that sense, it's because the software wrote a different word that sounded like the word I wanted and I didn't catch what I proofread it. :-)

To close this out, I just wanted to share these different things that I have learned with you, realizing that we all don't experience the exact same things, but that I am feeling confident that the majority of the information I have received is good and helpful and validating.

With that, welcome to new members; I hope this list blesses you as it has me and greetings to each of you.

peace and blessings-

w

wade odum - HypoK - Sacramento, CA

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There was something else that I have learned that I did not include in that e-mail to everybody, unfortunately, and that is that it is normal for the attacks to be progressive; smaller attacks leading up to a larger, more vicious attacks which likely would need to be treated at the hospital, if at all possible. The problem, of course, is, that you don't know where you are in the attack process itself, i.e. You don't know if you are at the beginning and you have several more attacks to go or you are towards the end and the next attack that you suffer may be the one that you must go into the ER for in order to be safely delivered from it. It was suggested to me that continuing to treat these attacks at home is, in fact, very similar to playing Russian roulette. After hearing that, I talked very seriously with CC about going ahead and being seen in the ER more often than not as opposed to just treating it home and waiting for it to end. I cannot bear the thought, even the imagination, that something could happen to me while I am at home and, though we were doing our best to take care of it and treated at home, something bad happens and we are left/they are left with a pretty horrific memory. At least if I am in the hospital, the hospital is responsible for my care and my survival, not my wife and kids.

That's just part of my daily thought process, unfortunately.

A reality for us in considering doing the ER when attacks hit, is that we have two children with us that would have to go with us to the ER, unless we can find family (at the drop of a hat) to stay here at the house while CC and I go in. Another consideration is possibly having my aunt and uncle meet me at the ER and speak for me and watch over my care there while CC stays with the kids until something else could be arranged. All of this is pretty overwhelming, fairly scary and requiring a plan of some kind that has to be flexible and easy to implement in a moment’s notice. Having just said all of that, I am now motivated to go ahead and write up a tentative plan of sorts, that we can mold and shape and figure out how to implement as needed, so that the kids are covered in taking care of them and easing their fears while my care is addressed in a facility designed to address it medically. Your prayers are coveted as we try to figure out the right way to handle all of this; …is there a right way?