Thursday morning at O'Dark Thirty...

Thursday, July 31, 2008

Again with the late night blog entry...I've GOT to turn this around somehow.

Attack again today; this one presented with light-headedness, pronounced tremors/shaking spasms and immediate weakness. I was looking in the pantry for something to snack on when it hit quick. I stuck out my hand towards CC who was sitting at the desk near by and she immediately took my hand as I became dependent on her for balance and stability. We walked to the black chair (Lazyboy) and once seated, the spasms increased. Missy brought some yogurt and I tried to feed myself but was having a problem coordinating my hand and mouth so Missy took over the feeding...independence just slowly slipping away and my muscles won't allow me to grasp it...
Shortly after this, I realized my eyes were closed and that it was game-on. This one was rough and has left me sorer than last time, particularly in my eyes, jaw, hands, fingers, feet, right ankle, back of my neck and abdomen (below the belly button but "North of the border", so to speak. I'll try to remember that phrase for future references that might become awkward otherwise.

My lower back, just at the top of my hips, has been very sore to the touch for several days now with no apparent relationship to my PT appointments whatsoever. Others on the HKPP list have been complaining of hip pain for quite a while too. I'm pretty certain there is a link between HKPP and hip/back pain.

My mom found an article on HKPP from 1998 which does a fine job of explaining the disease and informing the reader, so I'm going to include it here; complete with credits and links as well (Just a heads up that it is 3,800+ words long, so it may take some reading so read at your leisure.) Peace all-
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MDA Publications
http://www.mdausa.org/publications/Quest/q53periodic.html
Home> Publications > QUEST >QUEST Vol 5 No 3 June 1998

NOT CRAZY OR LAZY
Periodic Paralysis Brings Frustration, Misunderstanding, But Can Be Managed

by Margaret Wahl

COLLAPSING IN THE MALL, PLAYGROUND TROUBLES

"I was 13 or 14 and having ice cream in the mall with friends," says Christine Feigert of Portland, Ore., "when it just came on all of a sudden." Feigert couldn't move a muscle and had to be carried out of the mall on a stretcher.

"It was scary and humiliating," she remembers, especially when no one believed she was truly paralyzed. "The doctors told my parents I was trying to get attention," she says. "One doctor talked to me about being a hypochondriac or something."

Daniel DeShon of Bothell, Wash., has similar memories. "It was the first day of school in fifth grade," he recalls, "and we were outside playing kickball. I kicked the ball -- we had been running around -- and then all of a sudden my foot dropped and I couldn't lift it up. It was kind of dragging."

At first, DeShon's parents thought he was "kind of crazy," but when the problem persisted, they took him to an orthopedic surgeon, who operated on the boy.

"He thought I had torn a ligament in my leg," DeShon says, "so I went in for surgery." Oddly, when the doctor opened up his patient's leg, he found nothing wrong with any of the tissues. Puzzled, he applied an electrode to the child's muscle and found it didn't respond at all, a highly unusual occurrence. He admitted his bafflement to DeShon's parents. "When they took the cast off, my foot worked fine," DeShon remembers.

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MUSCLES MALFUNCTION WITH CHANGES IN DIET, EXERCISE, STRESS

Neither Feigert nor DeShon has a psychiatric problem, though it's easy to see why some people might have thought so. What both of them have is a muscle disorder known as periodic paralysis, which comes in two main forms. Feigert has the type known as hyperkalemic, meaning high serum potassium, periodic paralysis (hyperKPP), and DeShon has hypokalemic, meaning low serum potassium, periodic paralysis (hypoKPP).

People with these disorders periodically lose function of all or some of their skeletal muscles in response to changes in their diet that alter the amount of potassium circulating in the blood, exercise changes and -- just to confuse the situation -- emotional stress. Facial and respiratory muscles usually aren't affected. Recovery occurs after a short time, a few hours to a day or so, but persistent weakness can develop after many years of such attacks. In the hyperkalemic form, people also often have an inability to relax their muscles -- a condition known as myotonia -- in between attacks of paralysis. In general, people with periodic paralysis attacks only have them about 1 percent of the time. Attacks can come days, weeks, months or years apart.

These disorders aren't difficult to diagnose for an experienced specialist, says MDA grantee Louis Ptacek, a neurologist and neurogeneticist at the University of Utah in Salt Lake City. "The problem," he says, "is that these diseases are very rare, and most doctors have little or no experience with them."

Attacks are typically triggered when a person rests after exercising, Ptacek says, leaving a person vulnerable to charges of malingering. A typical example is the soldier who does fine on a 12-mile hike, then returns to the barracks, sits down and tells his sergeant he can't get up. The child who plays ball during recess and then becomes too weak to get out of his seat in study hall isn't likely to be believed either, Ptacek says.

Feigert, now 31 and a legal secretary, had several more attacks in her teens and 20s, some of which were extremely frightening. On one occasion, she had been out drinking with friends (some types of alcohol are high in potassium) and had come home and gone to bed. In the middle of the night, she awakened, nauseated and completely paralyzed. For some reason, her mother came into the room just in time to save her from vomiting while on her back, which almost certainly would have led to a choking incident, possibly a fatal suffocation.

At one point, her disease was misdiagnosed as polymyositis, an inflammatory muscle problem, and she was treated with the drug prednisone (Deltasone, Orasone). She gained 40 pounds (weight gain is common when prednisone is taken for months or years), but her condition remained otherwise unchanged. "To be that heavy in the 10th grade was just unbelievable," Feigert recalls with some bitterness. At other times, her disease was called panic attacks.

DeShon is now a 40-year-old deli department manager for a Seattle-area supermarket and he, too, has some bad memories. When he was in the seventh grade, he considered himself a fair guitar player and convinced his father to take him guitar shopping. "I can't remember how this came on, but my left hand got real weak and I couldn't hold down the strings. My dad was having me try out all these different guitars, and I felt really embarrassed because I could barely play." When his hand function later returned, the family doctor told his parents the problem was probably a psychosomatic reaction.

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A PROBLEM WITH IONS

The real problem, Ptacek explains, has to do with the way charged atoms called ions -- often called electrolytes in biological systems -- flow back and forth across the muscle fiber (cell) membrane. Embedded in the membrane are submicroscopic pores known as ion channels, which allow sodium, potassium, chloride and calcium ions to move between the inside of the cell and the fluid around it. These channels exist in all cells, but they're slightly different in different cell types. For example, the ion channels in skeletal muscle, cardiac muscle and nerve cells are unique to those cell types.

In excitable cells, such as muscle and nerve, these ion channels have a specialized role. In muscle, they're a vital link in the chemical chain of events that causes a muscle fiber to either contract or relax.

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IN HYPERKPP, SODIUM LEAKS IN TOO LONG

In hyperKPP, the problem lies in the sodium channel, says Ptacek, whose MDA-backed research group identified the gene on chromosome 17 that's defective in this disorder in 1991. The defect affects only the channels in skeletal muscle cells, which explains the lack of direct effects on the heart or other systems in this disorder. (Another MDA-funded group that included Robert Brown of Harvard University and Eric Hoffman of the University of Pittsburgh independently made the same discovery at almost exactly the same time.)

The gene these groups identified codes for a protein that forms the main part of the sodium channel, the so-called alpha subunit, the voltage sensor for the channel. A key function of the sodium channel is to sense voltage changes in the muscle fiber membrane, Ptacek explains. When the voltage becomes sufficiently positive in response to a signal from a connecting nerve fiber (see "Steps to Muscle Contraction"), the channel opens and allows sodium ions from outside the cell to rush in. This inward flow of sodium is an early phase of muscle contraction, lasting only a small fraction of a second.

What happens in people with hyperKPP, Ptacek says, is that a small percentage of these channels fail to close properly. He says to picture a system with two doors. Just as one door is opening, the other door is beginning to swing shut; in the sodium channel, this "inactivation gate" begins to swing shut almost as soon as the first door opens to let sodium into the cell, so that sodium can only enter the cell during the necessary fraction of a second.

In people with hyperKPP, the inactivation gate gets stuck. "It's as if you had a door that's warped," Ptacek says. "If you slam it hard enough, it will close, but if you don't, it won't close completely." At least some of the time, some small percentage of the second doors aren't closing, allowing sodium to keep leaking into the muscle fiber. As long as the second door remains open, the channel can't go into its "inactivated state," a necessary prelude to opening again when the next signal to contract comes down from a nerve fiber. That's when weakness or partial or even complete paralysis occurs.

And how does high serum potassium fit into this picture? "We don't understand that at all," Ptacek admits. In fact, he notes, most people with so-called hyperKPP don't have any elevation of serum potassium most of the time. If they show any high serum potassium level at all, it's at the very beginning of an attack of weakness or paralysis -->

But potassium, sodium, calcium and other ions are all in careful balance before, during and after each muscle contraction, so changes in any of these ions in the presence of a malfunctioning channel could certainly upset the system -- and apparently do.

In people with hyperKPP, skeletal muscle membranes are "perched between hyperexcitable [too excitable] and hypoexcitable [not excitable enough] all the time," Ptacek says. "Many of them have myotonia [hyperexcitable muscles, which can't relax] all the time, but then something pushes them over the edge to the hypoexcitable side of the fence and they get weak. The precipitating factors are vigorous exercise followed by complete rest, like running four miles and then lying down on the couch; eating high-potassium foods; and stress, for reasons that we don't understand."

Ptacek's MDA-supported group was also responsible for discovering that a disorder that involves persistent inability to relax muscles in cool temperatures, known as paramyotonia congenita, is caused by flaws in the same sodium channel as the one linked to periodic paralysis. However, the particular flaws involved in this disorder differ from those that cause paralysis. The mutations are in the same gene and affect the same voltage-sensing unit, but they're different mutations. Some mutations in the gene appear to cause a combination of both disorders.

One thing is certain: Doctors can cause an attack of hyperKPP by giving such patients a high dose of potassium, usually in the form of an oral potassium preparation. "The disorder is named for our ability to precipitate attacks by administering potassium," Ptacek says, not for any consistently high potassium level in patients. This diagnostic maneuver may not seem important, but it's been a godsend to many people previously accused of being either lazy, manipulative, psychologically disturbed or told they have a disease they don't really have.

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IN HYPOKPP, CALCIUM IS THE CULPRIT

HypoKPP, although it may look similar to the observer, is actually an entirely different disorder. Ptacek's group also identified the gene for this disorder, with MDA funding, in 1994. It's a chromosome 1 gene that affects the voltage sensor (alpha subunit) of another ion channel, a calcium channel.

People with hypoKPP have similar attacks of weakness or paralysis, either partial or complete, at widely spaced intervals. Myotonia isn't associated with this disorder, however. Typically, says Ptacek, the person with hypoKPP awakens with severe weakness of the limbs. Attacks can also occur in response to food or drink that lowers serum potassium -- those that contain a lot of sodium or carbohydrate -- and, as in hyperKPP, by rest following exercise. Emotional stress can also cause an attack. For some reason, males are generally more severely affected than females with the same genetic mutation in this form of the disorder.

People with hypoKPP generally have low serum potassium levels during an attack of weakness, Ptacek says, but otherwise their potassium levels are likely to be normal when tested. To diagnose the disorder, doctors can cause an attack by giving patients substances that acutely lower their serum potassium. Usually, this is an intravenous solution of glucose and insulin, which pushes potassium ions from the blood into the cells.

Ptacek says people with hypoKPP are generally very sensitive to decreases in serum potassium that wouldn't bother the average person. Anyone, he says, can be made weak by a drastic lowering of serum potassium, but hypoKPP patients get weak with even a slight fall in potassium level.

The calcium channel is also activated by voltage changes in the muscle fiber membrane. But an inward flow of calcium plays a different part in fiber contraction from that played by the inward rush of sodium ions. When calcium ions come through their channels in response to a voltage shift, some kind of switch is thrown by the channel that releases more calcium from special calcium storage structures inside the fiber. This release of internal calcium stores is the final step in muscle fiber contraction, because it allows the proteins that actually perform the contraction to interact with each other.

In people with hypoKPP, Ptacek says, it can only be surmised that "their calcium channels are somehow working abnormally. Their muscle fiber membranes become inexcitable, so I presume that they're not dumping calcium from their stores. If they were, the muscle should be contracting."

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DIAGNOSIS, UNDERSTANDING HAVE IMPROVED

Fortunately, the outlook for people with periodic paralysis is much improved over just a few years ago. Research, especially from the molecular genetics studies of the 1990s, has yielded genetic diagnosis procedures (see "Genetic Testing") and better understanding of the physiology of the disorder.

A genetic counselor can help with decisions about family planning. The periodic paralyses are dominant disorders, meaning a person has to inherit only one flawed gene to show symptoms of these disorders. In many cases, including Feigert's and DeShon's, there's no family history of the disorder and the problem is considered to be a new genetic flaw.

Better understanding of physiology has led to more rational approaches to medications and dietary changes.

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DRUGS HELP CONTROL SYMPTOMS

Symptoms can be controlled with medications, in combination with dietary changes, in most people, says Robert Griggs, a neurologist and MDA research grantee at the University of Rochester (N.Y.) Medical Center. Griggs has had recent MDA funding to study treatments for periodic paralysis.

The oldest drug for both forms of the disorder is acetazolamide (Diamox), used since the 1960s, Griggs says. It belongs to a class of drugs known as carbonic anhydrase inhibitors. They block the action of the enzyme carbonic anhydrase and have long been used to treat glaucoma. It isn't clear how they help in periodic paralysis, but they probably change the chemical environment of the fluid that bathes the muscle by changing which ions are excreted by the kidneys.

Griggs, Ptacek and others were part of a recent MDA-funded study that tested another carbonic anhydrase inhibitor on more than 100 people with both forms of periodic paralysis at seven medical centers. They found that the alternative drug dichlorphenamide (Daranide), also used in treating glaucoma, was highly effective for hypoKPP but not effective for hyperKPP. The drug's effectiveness was measured by its ability to prevent attacks of weakness when taken on a continuous basis.

The study doesn't have anything to say about acetazolamide, Griggs says. "We didn't do a head-to-head comparison of dichlorphenamide and acetazolamide." But he adds that, in his experience, dichlorphenamide seems to be the better drug for hypoKPP.

Other drugs are also used to treat both hyper- and hypoKPP. Diuretics, which change which ions the kidneys excrete and which they retain, are frequently used. For hyperKPP, diuretics in the thiazide family, such as chlorothiazide (Diuril, Diuregen) and chlorthalidone (Hygroton), are often prescribed. These drugs increase urinary excretion of potassium.

For the myotonia often associated with hyperKPP, the drug mexiletine (Mexitil) is used. This drug, also used to treat irregular heartbeats, seems to change the way membranes handle sodium.

For hypoKPP, a different type of diuretic, one that causes the kidneys to retain potassium, is used. Triamterene (Dyrenium) and spironolactone (Aldactone) are in this family.

In the future, Griggs says, "We might be able to create designer drugs that would actually modify individual abnormalities of channel function."

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CHANGING DIET NECESSARY -- AND SOMETIMES SUFFICIENT

Dietary modifications can also help, Ptacek and Griggs say. "High-carbohydrate meals or high-sodium meals and, occasionally, the carbohydrate in alcoholic beverages will trigger the low potassium and precipitate an attack," Griggs says of hypoKPP.

HyperKPP patients have to be careful about taking in too much potassium at a time, Ptacek notes. "Some patients know they can bring on attacks if they eat three or four bananas or drink orange juice, things that have a lot of potassium."

Potassium seems to show up in a lot of places, sometimes where people don't suspect it. Ptacek tells about a family in England that got attacks of weakness whenever they drank New Castle Brown Ale. A colleague of Ptacek's sent a sample to the lab and found the ale was very high in potassium.

Some other foods very high in potassium are oranges; some melons, such as honeydew and cantaloupe; dried fruits in general; some nuts, especially almonds; and sunflower seeds.

Christine Feigert was started on a low-potassium diet but admits she didn't really follow it because it didn't seem to help her much.

"I think dehydration is the biggest problem for me," she says. Feigert, who's now on a carefully planned exercise schedule, drinks a lot of Gatorade, a sports drink that contains sodium, potassium and carbohydrates and is designed to prevent dehydration and electrolyte imbalance in athletes. She also uses Power Bars, which contain electrolytes, protein and carbohydrates, and takes chlorthalidone. Her attacks are very much under control (she hasn't had a major one since 1992) and rarely affect her work as a legal secretary or her life in general. She's engaged to be married soon and says she and her fiancee will discuss family planning issues when the time comes.

Daniel DeShon has also found his own way. He didn't like taking acetazolamide at all, finding it interfered with the quick thinking he needed on his job as a deli department manager, and took himself off the drug. "I don't think my doctor was real happy with me, but I just decided it had to be," he says. DeShon finds the biggest trigger of attacks for him is sodium in his diet.

His doctor was sympathetic with the idea of dietary control and referred him to a dietitian. With her help and that of his wife, a nurse, DeShon developed a 2,000-milligram sodium diet, which is a fairly stringent restriction in today's world of prepared, frozen and canned foods, most of which are high in sodium.

He's had to give up his favorite packaged blueberry muffins (600 milligrams of sodium each) and has had to make a lot of food at home that he used to eat at restaurants. "We make homemade pizza," he says, "and I make my own sauces." If they do eat out, he says, "you have to be real assertive. You have to say, 'I don't want any salt. How much salt is on this thing? Do you have meat that you don't put salt on?'" (Salt is sodium and chloride.)

DeShon has recently started taking spironolactone and finds he can eat a little more sodium with this medication.

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DEALING WITH IT

In general, says DeShon, he enjoys his family and his work and lets his wife worry about the medical details. He does, however, keep a sharp eye on his sodium intake. "You learn how to deal with it."

The DeShons lost a baby in 1986 to what doctors believe may have been early-onset periodic paralysis. Since then, they've adopted two children from Korea. (They also have a son and a daughter they had before the baby was lost.) They didn't want to take a chance on another tragedy with a baby of their own, although, since 1986 predates genetic testing, they can't be sure periodic paralysis was the cause of the child's death. They worry about their biological daughter, Rachel, but, says DeShon, if she does develop the disorder, life will certainly be easier for her than it was for him because she'll be surrounded with understanding.

Feigert has found renewed energy and spirit through her exercise program. She started by exercising under the watchful eye of a physical therapist because she "just needed to get over that fear" of having a paralysis attack. Now, she rides her bike to work every day and is "feeling better than ever." She's taken off most of the prednisone-related extra weight and is working on stress reduction. "I can do more if I don't dwell on things, so that's what I'm trying to do now."

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STEPS TO MUSCLE CONTRACTION

Muscle contraction results from a complex series of bio-chemical events that take place in a fraction of a second.

1. A chemical transmitter called acetylcholine leaves the nerve terminal.

2. The acetylcholine contacts its receptor in the muscle fiber, which opens a channel that lets sodium ions flow into the muscle fiber. As sodium enters the fiber, the membrane around the fiber "depolarizes," or becomes more positive with respect to its electrical charge.

3. As the membrane depolarizes, sodium channels in the membrane open, allowing more sodium to enter the muscle fiber, further depolarizing the membrane. These probably stay open too long in HyperKPP.

4. Calcium channels open, letting calcium flow into the fiber. These malfunction in HypoKPP.

5. In response to this influx of calcium, an internal calcium channel opens, releasing calcium from inside the fiber. This internal release of calcium allows two muscle proteins, actin and myosin, to interact, which is the final step in muscle contraction.

The whole process must reverse to "reset" the muscle fiber before it can contract again.

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GENETIC TESTING FOR PERIODIC PARALYSIS

Genetic diagnosis for hyperKPP and hypoKPP is available through the DNA Diagnostic Lab at Massachusetts General Hospital in Boston, and genetic diagnosis for hypoKPP is available at the University of Utah DNA Diagnostic Lab. Have your doctor call (617) 726-5721 for the lab at Mass General or (801) 581-8334 for the lab at Utah.

Testing is becoming more widely available, so check with the genetic counselor at the nearest university medical center for up-to-date information. Your MDA clinic can make the referral.

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TRAVEL AND SAFETY

If you or a family member has periodic paralysis, it's a good idea to travel with the name and phone number of your neurologist and a brief summary of your condition. Many people have discovered that the average emergency room physician has never heard of this disorder, leading to possible complications.

Attacks of periodic paralysis usually don't affect speech. However, because you never know when you might be unable to speak for yourself (for example, after an accident that renders you unconscious), it's a good idea to get a Medic Alert bracelet or necklace. Medic Alert metal tags have critical medical information, such as your disorder's name, engraved on them, and also have a 24-hour phone number that any emergency physician can call for detailed medical information about you. You can join Medic Alert by calling (800) 825-3785 or via the Web site, http://www.medicalert.org/.

In addition:

• Don't swim alone. Attacks of paralysis in the water can lead to drowning.
• Make sure attacks are under control before driving a car or operating machinery.
• Let a few trustworthy people at your workplace or school know about your condition and what to do if you should become incapacitated.

Wednesday Morning: O'Dark Thirty...

Wednesday, July 30, 2008

Well, it is 1:00 am and I'm going to keep this fairly brief.
No attack today, just nausea and lower intestine cramping which stops me in my tracks. Also, I noticed some pressured/dull pointed pain up under my lowest ribs; these pains also stopped me in my tracks, though I was lying down at the time. Can't nap/sleep with cramping, nausea and *other* pains.
Yesterday's attack was complete paralysis which followed a morning and early afternoon of paralysis in my right hand. It was completely useless for that time; makes for an awkward day, I can assure you. Swallowing during that attack was very difficult and very purposeful. I was successful, but not without much effort.

Tonight (last night) was pottery again and I made another dragon-kind-of-creature...I was told it looks much like the dragon from Shrek. CC, Missy and Joshy all threw some clay on the wheel and made 2 cup/bowls and a dish/bowl. The look very cool and they were proud of their work. I too was proud of my work, though I still have not created what I am seeing in my mind's eye. I was very encouraged when the instructor asked me if I have sculpted before because she was very impressed with my efforts. I guess I needed that kind of compliment and encouragement because as a musician/songwriter/performer, I am most critical of my own work, long before anyone else would be. With her comments, she eased my fears of failing at sculpting something worth looking at or liking. CC told me that I should try the wheel next week and was also very encouraging as was Joshua and Missy. once I'm actually sculpting, I enjoy working with the clay and creating, but the initial steps of beginning are difficult and unfamiliar to me, where others just take off and go. 2 dragons down, one to go...? I don't know...

My buddy Brian was going to come up tomorrow (today) but he texted me last night and let me know he can't right now. I'm bummed to not see him, but will look forward to when he can next.

Liver biopsy next week. Much to be figured out prior to it, though. it will be another piece of the puzzle to find out what's actually up with my liver enzymes being so whacked for so many years now. Why hadn't they done a biopsy before now is far beyond me, but at least it is getting done now at our repetitive requests. We are STILL managing my health care due to Kaiser's inability or insensitivity or whatever. This is NOT how it should be, this much I know.

It's now 1:27 am and I'm stopping. It's my prayer and hope that each of us will get some much needed rest as we sleep.

Long attack today; completely paralyzed

Long attack today; completely paralyzed from feet to face. Couldn't move for hours, I think.
Have been in bed following it.

Sunday night

Sunday, July 27, 2008

Last left off with an attack on Wednesday while typing. It was due to low blood sugar.
That was followed by attacks Thursday, Friday, Saturday and today, Sunday.
Thursday attack was of unknown origin/trigger.
Friday was also unclear.
Saturday was due to having a large lab drawn (several tubes of blood taken) and then going into a air conditioned store with Laura. The cold contrasted by the heat outside caused tremors and internal chills and weakness.
Sunday: Today's attack followed lunch with family and Laura at Chili's and having a fork-full of Joshua's corn that I didn't know was extra-salted. I spit it out but I could feel the change hit within moments of tasting it. flaccid attack; unable to move or hold myself up. Eyes shut, still able to hear but not comply. 7 hours later I am recovering and now ready for bed.

Laura has been here since late Thursday and leaves early tomorrow morning for Long Beach.
I love her dearly, my sister of so many years now. CC and I adopted her so long ago and have never been separated by more than physical distance. She is our little sister forever. Prayers for her safe travels tomorrow PLEASE.
Pics taken tonight will get posted here in the next few days or so.

Also, please be praying that these attacks will cease; they beat me up every time they hit and leave me a little weaker each time.

Attack last night was not

Attack last night was not fun, but paled compared to this afternoons attack; down 7 hours. Big truck ran me over.
slow.

More in Depth Review

Wednesday, July 23, 2008

Let's see, where to begin today...
Well yesterday, Tuesday, was spent staying down, for the most part. I watched the movie with Joshua and Jayden and then watched my video called "The Police: Synchronicities". It is a video that spans the band' s entire career, and is a collection of behind-the-scenes commentary from each of the band members as well as their manager, and it includes several songs captured in concert. If you like the band The Police, seeing this video is a must. Anyway, I enjoyed watching the video and listening to music. Following that, Renée came and picked up her kids and CC and the kids and I all went to a pottery class that CC and the kids have been taking now for a couple of weeks. Last week, CC had paid for me to go and participate as well, however. I was recovering from an attack that afternoon and just slept until they came back home around 8:30 or 9:00. I really enjoyed the time at the pottery class; it was fun to watch Missy, Joshua and CC all create manifestations of their imagination's ideas in clay. I sat there for a few minutes with this big lump of clay in front of me trying to think of what I would make, even more so, what I would like to create out of clay, but I battled with my confidence as to whether or not I would be successful in creating what I could see in my mind. Once I got past the initial vanity or fear of being unsuccessful (I know that sounds stupid, but that's what was going on in my head). I decided to make a dragon, and by the end of the class, I had created what I had seen in my head, and I was pleased. Whether or not the dragon will survive the oven and glazing process is another question entirely, but I'm hopeful that it will.

I just walked from my office to the hallway and noted that Annie is sleeping on the couch, which I allow her to do when it's just her and I at home, but what is funny and interesting is that any will often use her paws to manipulate the pillows on the couch so that when she lies down she lays her head on a pillow. Right now, she is lying on the couch, lengthwise with her head on a folded blanket that's got to be 4 inches deep. I find that unique in a dog.

The only issue that I had yesterday, are dealing with different manifestations of the disease as well as a progressive disease, which means that the symptoms will change and mutate randomly, or so it would appear to be randomly. The more study, that is done on that I can recall, was when I was finishing saying "goodnight" to Joshua, and was standing in his doorway, when I had a set of sweats hit me, and in a matter of seconds I had soaked I was wearing. I became somewhat lightheaded, and headed back down the hall into our bedroom, where CC was cuddling Missy and I sat on my edge of the bed and waited for a moment for everything to calm down internally. When I got into bed and under the covers, I got slightly chilled and my body froze. I had to wait for a few minutes for that to stop as well, and eventually it did as my body warmed up. When I woke up this morning I realized that I had definitely been sweating during the night, because the sheets and my pillow were distinctly damp from sweating; from my feet to the top of my head. The sensation and realization of that phenomenon is reasonably frustrating for me, but it is a fact of life at this point in the game, a given symptom of HKPP. I know I have mentioned before, what causes the sweating, but as a reminder, my body sweats when there is a potassium exchange at the cellular level, so that when potassium rushes into the cells or into the muscles, the body sweats, and when potassium rushes back into the blood stream, out of the muscles, my body sweats, so it is kind of a "double whammy", if you will. It is also very common for those with HKPP to have attacks during the night while sleeping. It has to do with the state of the muscular system while at rest, that there is a potassium dump within the system and the low level of potassium in the system, combined with the actual drop of potassium within the system, brings on the paralysis or the spasms. These kind of attacks leave me exhausted when I wake up in the morning, often as if I had had no sleep at all, which is completely par for the course with others that have HKPP. I think that one of the biggest challenges in dealing with HKPP and actually getting that kind of diagnosis from a physician, is that the disease itself does not manifest itself identically in each patient, and that, each patient contending with HKPP, has 80% to 90% of the same types of symptoms from similar or same triggers, but it is that 10% to 20% that remain ambiguous and specific to each person that the doctors, looking at those specific symptoms, do not see the relationship or correlation between the symptoms and the people, globally. What I'm trying to say is that, essentially, since the doctors don't see identical symptoms in each person, they then assume that the diagnosis of HKPP is an inaccurate diagnosis, and there must be something else to blame. I believe that the reality is that those of us contending with HKPPHKPP and the more that we learned about it, the more we will be able to treat an prepare those people that have HKPP, but for right now, we do not know enough to be able to anticipate every attack.
I should have also included that, when I woke up this morning, I realized that I have elements of a sore throat; Joshua was the first to experience the sore throat, which lasted a couple of days and then CC was next, and now me. Drag.

Breakfast today was 2 scrambled eggs with a teaspoon of cherry jam; I use the jam as a flavoring with the unsalted and unseasoned eggs. Being that it is now to 31 in the afternoon, I should probably go downstairs and make a lunch/snack.

CC was able to get in to PT yesterday afternoon, which helped her immensely with her jaw and neck pain. A true blessing for her to be able to get in.

For a couple months now, I have been sinking about pursuing another Cardy meter as well as an oximeter to assist in further analysis before and or during attacks. After much dialog with CC, regarding these two items and ideas, we both are in agreement that it would not make a difference in the outcome of the attacks or in the treatment of the attacks.

Attack is started...stopping typiung

Tuesday Morning...

Tuesday, July 22, 2008

It's now 10:53 am and I should not be writing in the blog now...I should be at PT. Oops. Completely forgot about it when I woke up at 9:25. The good part of this is that I slept for close to 12 hours; a very nice change of pace and re-collection of some sleep that had previously escaped me. But I feel like a schmo for being a poor steward of the PT clinic's time and personnel. Fortunately, they have an open slot shortly, so I can still get in this morning and they are also being very kind about my laps of memory this morning.

Missy slept with us last night so CC could monitor her and Missy awoke this morning with 90% movement back in her neck and reduced pain. That's an answer to prayer and a HUGE thank you to all of you who also interceded with me on her behalf before the King.

CC goes in to PT as well today because her jaw and neck are causing her pain near tears, and she is the strongest person I know to date, in terms of coping and dealing with pain in its many forms.
Continued prayers for her are coveted.

I came across a note I had recorded of and for myself months ago regarding an idea to minister to churches in terms of their media and sound ministries. It struck me as something to re-think in terms of practicality and approach, but I am apparently still convicted that I have knowledge of that ministry that can be of blessing and benefit to churches, if I can figure out how to work it out. I guess there will be more on this later...time to head off to PT...via my aunt. 11:06 am.

Monday afternoon...bleh.

Monday, July 21, 2008

CC woke me up at 6-something this morning to tell me that Missy woke up nearly screaming in pain from pain in her neck. I went in and sat with her for some time and then helped her to move into our bedroom and get her set up on CC's bed where she was instantly more comfortable. Somehow, she tweaked her neck while sleeping and the pain was enormous. She has been alternating heat and ice for the day and it has helped.

My day has been kinda rough (outside the less than preferable sleep scenario), in that my eyes began spasming early on this morning and have not given me much of a break. It's a pretty concentrated pain and disruption. Add to that, full body muscle aches and sporadic spasms and generalized weakness, and you have me moving slow and cautiously. It does appear that today is a down day, regardless. Cramps and tummy runs (TRs will be the abbreviation I will use from here on) have made certain that there will be little comfort for this day, anyway.

Breakfast was 1 egg scrambled with 1 toast with specific cherry jam.
Snack was lite turkey sandwich with specific cheese, half a small green apple and some mini carrots
*(Took two K+ tabs at noon-thirty)
Lunch was turkey slices with very lite mustard and half a small green apple
Snack was small bowl of ice cream (I was wanting something cold and sweet...) Sweats have followed, right on time.

It's 3:55 pm and I'm heading back to lie down and rest my eyes. Typing/reading hurts.

Monday Morning Early...again

Monday, July 21, 2008

Brief: Yesterday ended without a real attack of sorts. The chair proved a true blessing the entire time in Old Town.
Came home and remained in bed for the rest of the day/evening/night.
Went to Capital Christian this morning, but were quite late due to tired children...but we made it in time for the sermon and we were reminded again that we need to be listening to what Pastor Cole has to say each week; I do believe it is where we belong at this point in our lives.
Went to Berean in Arden following church and made a dent in the secular musical foothold in our house. Both kids found CDs that they wanted and some books too...imagine that. This will be no small battle, but at least we know that THAT war has already been won; we simply must contend with the many, many skirmishes to come
We went to Fresh Choice afterwards, kind of pushing our luck but I sensed that I would be ok and was, in fact, ok through lunch. After returning to the van, I was hit with sweats, fatigue, back pain, hip pain, right leg weakness and brain fog. Came home and I remained in bed for the remainder of the day/evening/night.

Going to begin my food and symptom log again. Lots of work, but rumor is that I have the time...

************************
Please be praying for CC's jaw pain/neck pain and headaches to subside and halt completely. They hurt her terribly and I am helpless to intervene and rescue her from them. Please intercede on her behalf and petition our Father to remove these hurts from her and to bring her solid, invigorating rest from her night's sleep. It destroys me to see her in pain, as well as to simply know it when she is from my sight.
************************

Time for bed (again), it's 2:12 am Sleeping during the day is trashing my *normal* sleep schedule...
-fini

Saturday again...

Saturday, July 19, 2008

No attack yesterday, though I did take a 2.5 hour nap in the afternoon/early evening after which we went to Chili's and had a rare dinner out with no after-effects. All in all, it was a good day (especially since my bro is here with me).
Harry leaves today for the Bay Area and so we are heading to Old Town for him. I think Sean-O and Tiffany are going to join us as well.

Prayers for no attacks and no issues while we do our very best to enjoy our day out together.

Harry prayed for us as a family last night...I love him...he is indeed, my brother like Kev, Scotty, Scott, Craig and Keith. If i sit and think more, I'll come up with more that are brothers as well. The list above is not finished...

Today so far...

Friday, July, 18, 2008

Our friends the Fetters came over last night and we had dinner together before I had another attack shortly after dinner. My brother Harry came up to visit but I was in mid-attack by the time he arrived.
Frustrating.

Having Craig and Beth here was such a lift for me; I was not anticipating an attack.

This morning, Harry and I watched "Journey: Frontiers and Beyond" and "Eagles Farewell One Tour in Australia" before it was clear that I needed to lay down for a while. Harry went with CC to do errands and Joshy's appts. while Missy and I remained and I slept for 2.5 hours.

Tonight is dinner and a run to the river on Fair Oaks entrance. 7:00 pm.

I did have a moderate

I did have a moderate attack yesterday but I did not have the ugly fall out. Meds are back on track. PT is a blessing.
-w

I felt sick for all

I felt sick for all of Wednesday; nausia, sweats, cramps, weak, and had to be near the bathroom.
I missed my AM meds.
Bad.

Waiting for Wednesday

Tuesday, July 15, 2008

Why the title? Because I have not felt well since this morning. I was productive shortly after I got up, but by noon I was feeling crappy and that has not changed as of yet.
Good things were that I went to PT and that felt reasonably good (all things considered), but that was before noon. Another cool thing was that one of my former crew at FOPC, Robert Patterson, came to visit me after he got off work and we spent an hour or so just catching up and touching bases with one another. That was probably the bright spot of the afternoon, though I began to fade right as he was preparing to leave which prevented me from seeing him out; the polite and proper thing to do. This disease has prevented me from properly seeing most visitors off after they have come by; extremely frustrating.

Over the past 3 or 4 days I have watched the movie "Willow", from back in the 80's. It was done by Lucas Films and has impressive special effects for that time frame of technology. I was told that a friend of our family did some voicing work in the film, but his name wasn't in the credits (not that I saw anyway) so I hope to find out more on that.

I took a 4 hour nap in hopes of feeling better, but to no avail. I don't believe it was an attack, though in my dream this afternoon, I did contend with an attack which had multiple symptoms and after awaking from it, my right shoulder, once again, has a dull but piercing pain in it; a symptom which has, in the past, indicated a potassium drop resulting in specific muscle pain and myopathy. The pain can last for weeks, unfortunately. Let's pray and hope that is not the case this time.

It is before midnight...I'm ahead of the game I think...

Before signing off, please be praying for a good friend of mine named Mark who is in certain need of prayer support. I'll not be specific, but will trust that God knows who this specific Mark is and will hear the intercessory prayers on his behalf. Please do pray for him before you close out your browser.

Also, please be praying for CC who is suffering form major neck and jaw pain and random migraine headaches that knock her feet out from under her. We, I, covet your prayers for her and for Mark.

Monday night: Roses are Red, Violets are Blue...

...I'm SICK if these attacks! How 'bout you?
*yahn...*

Monday, July 15, 2008

There isn't much to report today, though a few things are notable.

First thing, I was able to spend a nice block of time playing some D&D with Joshy. I really enjoyed my time playing with Joshy. I love to watch his imagination work and to hear his characterization in his voice as he plays the character in the game. He's catching on very quickly, and, likewise, I am remembering more of how to play the game. Regrettably, sometimes I'm finding out that I should have thought things through more in advance before starting the game like I used to do 25 to 30 years ago... it's been quite some time since I've played with real interest. Okay, actually, that's not completely true; before I moved my family up here into the Sacramento area, I did engage in two or three games with my niece and nephews, who we live virtually next door to in San Carlos. I really liked playing with them as well, but the stress of my job and the lack of my planning ahead for the game made the game more difficult for me to play, and I'm guessing less entertaining for them as well. I wish that could have been different, I do...

The second thing was that, about two hours or so into the game, I started to sweat profusely and get a bit lightheaded. I took that queue and went and reclined in the chair in the living room. Actually, before making it into the living room, I called CC on the phone and let her know what I was feeling and what I was planning on doing and being that she was literally driving by our entrance street what I called, she turned in and came back to the house and got me the meds that I was needing and help get me situated to write out the rest of the attack. Strangely, this attack did not completely manifests into full spasms or full paralysis; the symptoms were profuse sweating, brain fog, complete with difficulty speaking and thinking and overall body weakness and fatigue. I awoke about three hours or so later, and cc first words were "Hi! Did you get the number of the truck?" That pretty well summed up how I looked, and it's summed up pretty well how I was feeling. It is normal after an attack for me to feel as if I have run some kind of marathon race and didn't limber up or stretch first, for that matter, it's like finishing said "marathon race" without stretching or limbering up, and never having run a marathon race in my life. All of my muscles hurt, all of my joints hurt, my feet don't want me to walk on them, my hands don't want me to use them to lift myself out of the chair or grasp a cane or hold onto a walker, my eyes don't want to focus, my eye lids don't want to be open or blink and my jaw wishes that I would leave it alone. Without getting terribly graphic, that's typically, how I feel following an attack, sparing you the more definitive description for now.

The third thing to note, perhaps the most joyous note of the day, was that my brother and music writing partner, Scott Rose, called me to let me know the current status of his new baby daughter Gracy. It was thought that Gracy was going to have to remain in the hospital until this Wednesday, however, they allowed them to bring her home today and he called with the joyous news. She is apparently suffering from some kind of acid reflux issue and I know that he would covet your prayers for a swift and permanent healing of that condition, especially in such a young, brand-new little body. He told me that Kristy is doing well and healing fine from the delivery. Needless to say, both are exhausted from trips to the hospital, long hours in the hospital, little sleep at home, all the while loving and caring for Gracy's older brother, Adam (who is four years old, I think). I know that they would appreciate your prayers as they eagerly hand excitedly move forward with a little girl to adore along with her four year old older brother. Scott and Kristy, to say that I miss you guys comes nowhere near the depth of the phrase. Just know that you are in my heart and you are in the hearts of those in my family, and I'm eagerly looking forward to the day that God will allow us to be together in the same place at the same time

Once again, it's after midnight; it is now 12:57 a.m. in the morning, and I need to go to bed. It is time to close this down.
-Peace-

Sunday notes

Sunday, July 13, 2008

We went to FOPC this morning to the 9:30 service. We arrived a little after the service started but we took the extra time to load my chair into the van so I could motor around more easily and see folks, plus be able to keep the oxygen on.

We were SO warmly received by EVERYONE, we were feeling truly loved and missed.
Sound-wise, the mix was excellent in the house; oh how I have missed the "sound" of the Nexo system in there. It just defines fidelity for a large room. A very good operator was at the helm this morning and I got to meet him for the first time; Greg Culler. What a wonderful and respectful heart for ministry and kind appreciation for all the work that preceded his coming on board at FOP as their CHief Audio Tech. I was blessed to meet him and listen to his mix. Very well done. And then, getting to see Carl, Madoli, Chris P., Robert P., Scott and Leslie, John Weig and a few more whose names are fleeting away even as I type...please forgive me.

My former Chief Tech was attending worship at FOP as well this a.m.; Jason Brasel! I haven't seen him in over a year now. What a warm and neat brief homecoming for us both to be there on the same Sunday and to actually see one another. Jason is an exceptionally gifted young man and for part of my tenure at FOPC, I was blessed to work with him. I hope to meet up with him again before too long.

After coming home, another attack hit in the mid-late afternoon while I was downstairs, where I stayed for the duration of the ugliness.
It's now 8:20 p.m. and I'm done. Body aches all over and lying on the new bed is the logical next step.

Oh, lastly, just an FYI for those who read this for catching up purposes, I want to let you know that I am expecting to begin including more graphical and necessary notations of my symptoms and attacks which might make some of you uncomfortable or be grossed out, but the original purpose and key to this blog is to be accurate and observant regarding my medical issues and symptoms, however *awkward* those symptoms may be. I'll try to warn you at the beginning of the paragraph.

Now it's 8:32 p.m...

Saturday's Start...

Saturday, July 12, 2008

I woke up around 8:00 a.m. and CC was standing beside me. I realized that I did not put on my CPAP last night and I was cold and in pain. CC covered me with more blankets and put my CPAP machine on me and I went back to sleep until 11:45 a.m.
I awoke very stiff and tight, painful to moves anything. I used the bed to bring me into a near sitting position and then grasped tha walker in order to stand and make it to the bathroom.
CC brought me a breakfast and my morning pills and I then realized that I was over 2 hours behind in getting my pills into me. Things began to make sense.
It is now 1:24 p.m. and I can walk with the use of the cane instead of the walker, I now don't hurt as much as I did.

Do any of you have install disks for Windows XP and MS Office 2007? I can't find the ones I am certain I have and Missy's computer needs to be re-worked before she can use it again. If I can borrow them for a few days that would be great. Please let me know by emailing v12pilot@surewest.net from he blog email option.

Friday Evening Brief...again

Friday, July 11, 2008

medium attack this afternoon; heavy brain fog, light headed, progressive paralysis in feet, hands and legs. CC came home just as it began to hit; I managed to call her just prior to hand problems.

Looks like no time of day is safe again...
I think I'm pretty used to the pain now...I think, anyway.

tomorrow?

Friday Morning and Early Afternoon...

Friday, July 11, 2008

Went to sleep around 3:00 a.m. and set my alarm for 9:00 a.m. to hopefully turn my sleeping pattern around tonight.
I woke up with my left have numb and useless (for the most part) but it is now 12:45 p.m. and my hand is back to its usual self.

The kids and I took Annie for a walk around the block with Missy walking Annie and Joshy riding on my lap. Once we got 2/3rds of the way around, I asked to hold Annie's leash and I walked her the rest of the way back. I learned the key to it is keeping her leash very short and right next to my chair and then she walked right beside me without a struggle or strain.

I am in the process of backing up CC's computer to an external harddrive that we bought last weekend. Her computer is the main computer for us and holds all of our *necessary* information and has yet, until today, never been backed up. Why now? Because it has been showing signs of small *strokes* shall we say and has had too much crap on it that she and I didn't put there...so we now have an external drive that will back up our computers safely.
Missy's computer freaked out at some point, unbeknownst to me, and they rebooted several times without success..I'm impressed it has chosen to still *run*, though it is playing by its own rules now and has removed my administrator privileges so I cannot install, uninstall, change or otherwise fix any issues, like saying it is on the internet but leaving a blank screen and hiding the tool bar unless you move the mouse to the top of the screen...all of this happened after it rebooted for me after much investigation and such.

Anyway, the good thing is that I can now re-install windows XP and Office on it and then put back the data we wanted to keep that I saved.

I think we are going to begin video taping my attacks, if we can, so we have physical facts to share with the MDs once we actually FIND trustworthy and HELPFUL and CARING MDs. I believe they exist, I just have no idea where they are.

Onward and forward...may I have no attacks today.
peace-

Another Late Night...

Friday, July 11, 2008

First, the best news of the year; My buddy and brother Scott Rose and his wife Kristy welcomed a baby girl into the world Thursday morning!!!!!!!!!!!!!!!!!!! I am the proudest uncle on the face of the earth! *We love you guys and miss you terribly!*

Wednesday night ended with a hard and nasty attack after being downstairs and watching a movie with Missy and CC. I was able to force myself up the stairs and knock the bedroom door out of the way and make it onto the bed before I completely had to give in to the spasms that began when leaving the downstairs bathroom. That was hell.

Today was PT which was a blessing, but I remained in a brain fog all day; slow to think, reply, answer, decide, etc.

By early afternoon I sat in the LazyBoy and watched some TV and then noticed a severe sweating, soaking my shirt and sweats within a matter of a minute but the sweat continued for a number of minutes more. Brain fog became thick and then I realized that I couldn't move anything. My face, eyes and throat were not paralyzed and I was able to whisper in very short difficult breaths. this one scared me a lot, though CC stayed beside me all the time; coaching me, reminding me how to get through it. 4 to 5 hours later I am able to stagger/shuffle with my cane. One of these times, we just have to go in (911) to see if they can some how "break the chain" of these attacks and monitor me PROPERLY without casting their unbelieving eyes and spouting outdated, incorrect assumptions and under-the-breath remarks about a disease that I am intimately familiar with now and truly battle every single day.

Tomorrow will be a "down" day, more than likely.

It's 2:10 AM. Perhaps I can sleep now...

So Far, So Good...For the Most Part

Wednesday, July 09, 2008

Well, yesterday came and went with no "formed" attack, that is to say that I was pretty aware of the potassium dumps within my system (4 or 5 I think) but none of them turned the corner into an actual attack. So far today, I have had similar episodes of potassium dumps but nothing has come of them, most fortunately. Hopefully tonight will not be eventful either, however, it is usually in the evening when things go South.

The smoke here is literally thick...it's hard to believe. I'm staying inside due to the density of smoke in the air. You can physically see it, as if you were downwind at a campfire; the haze is motionless and still and very difficult to breathe. Supposedly, this weekend will bring us some *fresh* air from the coast...I hope so. Today is a good day to not live in California...I'm thinking Colorado or Tennessee would be nice.
The kids are bored having to stay inside but when they try to venture outside, even for a minute, they retreat back inside with haste and distorted faces showing their displeasure.

Well, rats. breathing is a little harder right now, so I'm going to stop writing and go put on some o2 (oxygen) and see if it lets up or "turns"...

-peace

The Past 48+ hours (or so...)

Tuesday, July 08, 2008

HKPP...
For the past week, I have had attacks every day; generally late afternoon towards evening for the most part. I was down yesterday for nearly the entire day because being up was more painful than being down, but today was less entertaining, so to speak, and I have been down all day except for my appointment at PT which my aunt drove me to and from, and even that was a wheelchair journey.
Yesterday, CC took me to the mall for another wheelchair journey to Border's Books who is closing their Sunrise Mall location, so everything in the store is on sale; 40% - 70% off, so we went and got some D&D stuff at a steal of a price. When I got home I was wiped out but did not deal with an attack until 7:30 or so.

My gut on what's going on is that I'm having several smaller attacks which are part of a single, larger Abortive attack which will likely culminate with a nasty hit at some point sooner than later. I'm not trying to be a "doom sayer" or something like that, but this has been a pattern from recent history.

Some of you have called but I have not been able to carry on a conversation and thus have not taken the call; please forgive me, I'm not trying to lock myself away or avoid anyone. Some days I can handle conversations and other days are tough to deal with.

Anyway, I need to get back to bed and chill on concentrating on writing. Oh yeah, in case I didn't note it before now, CC and I DO have new bed(s) that are motorized and completely adjustable. When the beds are pushed together they make a Cal King size. What an incredible difference to have new mattresses and the new frames, the frames are from a close family friend from the Bay Area; the blessing of them leaves us speechless.

For now, peace. Pray for pain relief...

A Saturday Outside

Saturday, July 05, 2008

We all slept in a bit this morning, mostly because we all stand up quite late last night. Neither CC or I got a very good nights sleep, but I believe that's because we were sleeping on brand-new beds with brand-new sheets that felt more like hotel sheets than home sheets. I guess also, our door was shut for the night, which meant that we didn't have any air circulation through the room, so it was a stuffy night as well. Tonight is very different; we have our doors open so that we can have good care circulation and we have the house them on as well, which will help to cool the house down, especially the upstairs.

So, this morning was a lazy start everybody kind of getting going at their own speed, no real rush involved, and we decided, off the cuff, that we would make a run up to the Galleria Mall in Roseville and shop for a little while and then head down to the Halden's hotel and swim in their pool (the kids, that is) and then we would go back to our house for hamburgers and then back down to swim for whatever amount of time would be left of the evening. Regrettably, this plan was interrupted while we were all sitting in the food court at the mall with everyone eating their snack and I have finished my snack that I had brought from home. An attack started very slowly, taking my independence away, one brick at a time. I was in the motorized chair, which had been fun, and liberating, in fact, I was able to keep up with those who were shopping and looking around and I have for the most part gotten over my vanity regarding how I look sitting in a chair and the fact that I need it. Anyway, the attack hit and as I sat in the chair, we disconnected the control module from the arm of the chair and my nephew Erik walked beside me controlling the chair and steering us out to the sidewalk to where the van was waiting and got me loaded in and we headed for home. Not a very comfortable ride home, but then they never are. Being that the spasms did not kick in until later, I just simply couldn't move, so my head would bounce around, depending on if we turned, started or stopped. If I remember right, CC, was driving with one hand and doing her best to hold my head with the other; talk about multitasking...

I came-to in the big black chair with CC sitting beside me. The standard fallouts from these attacks are general weakness throughout the body, some element of brain fog, very sore shoulders, neck, hips, lower back and what feels like swollen hands and fingers, even though the hands and fingers are not swollen; they just hurt like hell.

CC, Erik and Josh all stayed with me at the house, while everyone else drove down from the mall to our house, and they picked up Erik and Joshua and then went to the hotel and went swimming for the evening. They ended up just doing pizza at the pool while CC and I worked on some of the leftovers in the fridge.

It's now 1:20 a.m. and I HAVE GOT TO get to bed sooner than this...not good.

-peace

4th of July...

Friday, July 04, 2008

I decided to get back out of bed to post a brief one about today-
I slept in until 11:00 and since I have been using the oxygen with my CPAP machine, I have been sleeping better, more restful I think. It's all about the quality of my life now so that I enjoy the quantity of my life. For a while there, I wasn't enjoying much of anything unless it was related directly to my wife or children.
We bought 2 mattresses designed for motorized, adjustable beds from Sleep Train, which arrived today AND my sister and family (sans my oldest nephew Sterling) came up for the weekend and brought with them 2 adjustable beds from friends of the family in the Bay Area who were letting them go, so all in all, we have a new bed(s) for us; 2 extra long twins which put together make a California King, the same size bed we had.
Our bed had been on the floor which was VERY hard for me to get into and out of, but we were trying to figure out how we would go about buying a new one, could we afford it, what kind do we need/want, etc. Now we have a Craftmatic frame with Simmons mattresses and full adjustability. It is fantastic. We are both excited.

I stayed on my feet for the most of the day getting things cleaned up and organized in my office, but by nightfall I was hurting quite a bit in my hips and lower back. The kids went with the Haldens to their hotel (which has a pool) and they swam for a little while while CC and I stayed home and briefly sat outside on the sidewalk (me in the regular wheelchair) and watched a couple of the neighbors set off fireworks. After coming inside, we went upstairs and laid on our NEW BEDS and tried out all the functions, which worked great. CC then left to pick up our kids and Kirsten and Erik and come back and I watched TV until I realized that I had not posted, so that is the catch up for today; no attacks, just higher pain level and normal evening exhaustion.

Oh yeah, I got to speak to a good friend from many years ago when he called today; Steve Brown from my life at Trinity. He wishes to send his greetings to all who knew him and hopes to be able to be back in touch with our "old crowd" from our days back then. Let me know and I will forward you his email address. Steve, you really blessed me today by taking the time to call me and chat for a while. My day was made with that phone call. With my sister coming up, it was icing on the cake, so to speak.
Done-

I hope your 4th was fun and safe-
peace

Striving to stay current...*revised at 8:00 p.m.

Thursday, July 03, 2008

Yesterday evening, just after going down stairs for dinner, another attack creeped in. This one began very slowly, almost in a surreal way in that I was able to keep my eyes open for the better part of the start of it, however, once the spasms kicked into full swing, I realized I couldn't see anything and could only hear, which is more normal. It was 10:00 p.m. when CC woke me up to head up to bed but my mind began to race and body felt pretty bad, so going right to sleep wasn't an option, hence I was awake until 2:30 a.m. and emailed a few folks 'round that time.

Currently, it is 6:10 p.m. and CC just woke me up from a 3 to 3 1/2 hour nap that I took while she and the 4 kids (Missy, Joshua and a best friend of ours 2 children) went to see "Get Smart". We watch her kids for her while she is working during the week, for the most part. Anyway, I didn't go in hopes of resting while staying home and kept my cell phone in hand in case I needed help (the cell has a one-key speed dial for her and my aunt and a few others and has proven itself a life saver, literally, in the past. As it was today, no significant issues requiring a call.

At this moment in time, I'm not feeling as well as I want to; chest pain has lasted now for a few days straight with no relief, different muscle pains all over rotate as they see fit (I guess) and nausea is now an apparent permanent staple in my existence. In particular, the nausea is most frustrating simply for how it makes me feel, which is *blah*, but it is a standard symptom for HKPP due to the mucous created by the body in the stomach , throat and head, all of which are the body's attempts to protect itself from potassium dumps within my system...bleh.

Time for dinner...6:26 p.m.

Finished dinner and began working on getting the house/Living Room cleaned up and such, including getting a VCR hooked in to our Frankenstein-ed TV/stereo system...and now, an hour and a half later, I'm in fair pain and elevated on CC and the kid's radars, so to speak. I'm to stop "being productive" until tomorrow sometime which is a good but frustrating call. My mind wants to finish the projects I have begun but my body cannot cooperate, so pain sets in, I begin to have breathing issues and I have to lay down with some oxygen (which I've been on all day). Instead of remarking continually about the oxygen, from here on out, it will just be assumed that I'm on oxygen nearly 24x7 because that is essentially the truth of the matter, though it sounds more dramatic to say it. It's a given and that's that.

CC found an old baby monitor that we had used with her mom living with us so that we could hear her at night and see her from the remote camera and mic, so we are going to hook that up for me when I am down so that they can hear me if things go South, so to speak. That will be helpful.

Okay, I'm done for tonight. 8:10 p.m.
peace.

Look ma! No delay!

Wednesday, July 2, 2008 (See! I CAN post an entry before midnight...I knew I could)

A new nurse came today; our *regular* nurse went out on medical leave a couple months ago and our interim nurse turned out to be very familiar with HKPP. That was a serious blessing while it lasted. Now we have a new nurse who discretely informed me that my case is being reviewed for termination. That was inevitable, but we were hoping to get as much help from them as possible for as long as possible before we would have to embrace the now *old* routine of being alone in the medical skirmish. The nurse is very kind and understanding, but there is very little she can offer in the way of specialized care and awareness of my disease, if I’m going to be real about it.

The last couple days have provided only a few hours of “normalcy” as I once new it, meaning that for a few hours both days, I have had enough strength and constitution to accomplish a couple things off my list of waiting tasks. Only a few hours out of 48…I think I mention recently that this past Saturday and Sunday included attacks each day, noting that Saturday’s attack, though not triggered by carb spike or potassium drop, was especially nasty and lasted several hours. Those ones hurt the most, aside from the pain that results from ER visits which can be quite painful as well.

Anyway, today has included exhaustion, shortness of breath, chest pain, cold & clammy skin, sweating intensities and intermittent brain fog.

Last night, after posting another blog entry, I went to bed but this time I hooked my CPAP machine to the oxygen compressor so that I would receive oxygen while I slept. I slept straight through until 10:15 a.m. and woke up much more alert. Another plus in sleeping with the oxygen on is that the compressor provides a regular pulsing white noise which both CC and I respond well to when going to sleep. Sometimes the complete quiet can become a point of concentration, in that it is so quiet that it is hard to get to sleep while hearing every little night noise within and outside the house, if that makes sense…well, it makes sense to me anyway.

I don’t know if I included this point in a previous post, but I am now on oxygen all the time, while at home, on the computer, in the car, etc. On the one hand, that concerns me but on the other, it helps me, so I am striving to keep the focus that it is a helpful thing and not focus on the obvious progression of symptoms…again, I’m not ignoring, I’m just trying not to obsess which is my tendency now when I become concerned or scared.

I got an email from a young lady today who is having to contend with the same types of symptoms I am and is not yet diagnosed correctly, if I had an opinion on the matter…not that I have an opinion…I seldom ever do…not.

Anyway, you can be praying for her and for her speedy recoveries from these debilitating symptoms.

Time to get some food from downstairs; it’s 5:08 PM

-peace

July 02, 2008...See! I CAN write more often than every 2 weeks! I knew I could...

In an effort to cheer myself up before going to bed (it's now 12:43 a.m.), I decided to look through my digital pics on here and found a few to share. Some may have captions and some may not...
































































Not only did I get to MEET Peter Gabriel, but he shook my hand, took a picture with me and actually seemed to care about my opinions of the SSL mixing desk I had installed (he now co-owns SSL). George and Andrew of SSL were the ones responsible for providing me with that once in a life time moment; I will never forget what you guys did for me that day at NAB 2006. I miss you guys and think of you both often.





So who's the guy in between Craig Fetter and me? Well, if you like Celine Dion's concerts or recordings, then you like this guy as well; His name is Deny and he has been Celine's audio guy since her very start and is soley repsonsible for harnessing her vocal chops into incredible works with music. In my opinion, he's a craftsman's craftsman and one of the best in the industry...and he knows (knew?) my name.