Bell's Palsy; Week Four

Not much new to report this week except that I am clearly making progress. People who saw me a week ago are commenting that I'm looking better. I no longer need the eye-patch at all and probably don't need to use eye drops during the day. I still need to tape my eye shut at night, but that may not be for much longer. My speech is clearer and I can make myself understood without holding my cheek up. Looking at me, I'm told that I look nearly normal - it is only when I am animated that one side is clearly not following along.
I have noticed that I've experienced some discomfort in my jaw; as if I have been clenching it while asleep. I'm not sure what that's about, but I report it for completeness sake.
I still get fatigued. It may be that because I am feeling better, that I press myself more and thereby tire myself out.
Progress is generally up, but variable. Yesterday was rather good but I could tell as soon as I woke up this morning that today was going to be a slight set back.
I continue to feel occasional twitching and - despite my very learned physician's comment - believe that phenomena to be a sign of improvement. For what it's worth: I rarely had twitching like this before being afflicted with the palsy; it is not occurring anywhere else on my body - only on the left side of my face; and once it began about two weeks ago, I started seeing improvement. So my conclusion is that there is some connection with the twitching and my palsy.

Bell's Palsy; Week Three

So now I'm in my third week and have settled in a bit.
One of the young men in our church is finishing up medical school and - providentially - did a presentation specifically on Bell's Palsy during his class work. He and I chatted after church yesterday and chatted about how my symptoms are playing out. It was fun to get geeky about the medical and physiological issues. I think my guy appreciated having a real case to observe closely rather than rely on the research he did for the presentation.
A couple of conclusions and observations:

• Due to the somewhat unknown nature of the condition's cause, treatment is a confusing thing. It is a case where if the condition is treated vigourously, it will subside in six weeks; but if left alone, it will take half a dozen. That is, there doesn't seem to be much correlation between treatment and outcome
• My case isn't as bad as some. There are stories of people who could not speak at all during the depth of their affliction. My speech has been distracting, not suitable for prolonged public speaking, and does not allow for careful conversation; but I have NOT been completely robbed of my ability to communicate
• There is some slight improvement to report. I am tolerating being without the eye-patch for most of the day.  Several people have commented that my face is not quite as flaccid as it was last week (though it's hard to say that objectively because 'church people' really like to be encouraging!)
• It is very possible that this could be temporary 'normal' for a couple of months. Most stories  indicate that's the typical length of the palsy
• Progress will be slow but steady. So slight improvement is a Good Thing - I'll take it. The big fear is that this is one of the rare cases where the condition becomes permanent. But - so far - that does NOT seem to be the case
• Eye drops are my new Best Friend. I keep my little bottle with me all day and probably apply drops about five times during the day
• Sight in my left eye (affected side) seems to deteriorated in some way. In some way that I can't describe, it seems that it is difficult for my right and left eyes to both focus on a thing. It is not double-vision, it is just ... not right. Pardon the pun, but I am 'watching' this phenomena for further developments
• The hearing effect that I described before (Day Eight) is a known symptom. My med student friend told me that is called, "hyperacusis." There is a muscle in the inner ear that contracts as a protection when a particularly loud noise occurs. That muscle is not working now and so I am sensitive to loud noises on the left (affected) side. See http://en.wikipedia.org/wiki/Hyperacusis
• I'm better in the mornings - my face sags more as the day wears on
• It is hard to work. Subtle conversation is impractical. It is even hard to read. I fatigue more quickly
• Because of the fatigue (above) and the fact that my body may be trying to fight off some sort of attack, I'm taking mid-day naps to keep rested
• Particular to me: I'm very word-oriented and a "verbal processor." When I can't speak clearly or smoothly, it slows my thought processing down which is frustrating. Because of that frustration, I am finding that I'm getting a bit grouchy

So, seeing as I am likely in this for a long haul, I will slow down my frequency of updates here on the blog. As new things come in the next week, I'll update this entry and then begin a new one in about a week.

Bell's Palsy; Day Eleven

Well, another pretty stable day.
Spent most of the day with the eye-patch off and experienced some spasms.
Went to my primary physician and he told me most of what I already knew. Interestingly, he's also had the condition so was sympathetic. I asked him about recovery and he said it could be a couple of months. But if it goes beyond six weeks, I should let him know.
As he has experienced the condition, he is up to speed on the science. He said that the core problem is nerve inflammation - that is why application of steroids is helpful. But the idea that said inflammation is caused by a virus is not conclusive. The condition is "idiopathic." OK, I am a Big Words person; what does idiopathic mean? He said it means that 'physicians don't have a clue.' Check this out: http://en.wikipedia.org/wiki/Idiopathic . I appreciated his honesty.
I asked him about the spasms that I experienced Monday night and what that might mean for recovery. He told me it really doesn't mean anything. Analogously, the real 'proof of the pudding is in the eating:' my muscles will be more responsive to my commands. Recovery will be slow and (hopefully) steady: my smile will become more and more symmetrical, for example.
He reiterated my care: eye taped closed at night for as long as my eye will not fully close, use of lubricating eye drops, particular care for my teeth, etc.
So the whole theory about using the NSAIDs to reduce the nerve inflammation didn't get any traction with him. My experience of using Ibuprofen and then experiencing the spasms were serendipitous coincidence - not cause and effect. And, just to report here, after about 36 hours of use, I didn't experience any noticeable increase in supposedly helpful twitching.
Summary: Just have to ride it out and treat secondary symptoms.

Bell's Palsy; Day Ten

So this is the magical tenth day where recovery *might* begin. But it didn't.
Last night I started thinking about what might have been different on Monday that wasn't true yesterday. What I remembered is that I had a bit of a stress headache and took an Ibuprofen for it. Later that night, I started experiencing the spasms. So I did some Wikipedia research and realized that Ibuprofen is one of the NSAIDs (Non-Steroidal Anti-Inflammatory Drugs). OK, I was prescribed a steroidal treatment during the first few days specifically to reduce the nerve inflammation  I wonder if NON-steroidal anti-inflammatory drugs might be helpful and did I accidentally discover this on Monday?
So I began a self experiment. I treated myself to 12 hours of Ibuprofen during the day. Then I will take a Naproxim Sodium for the night (12 hour dose) and see if there is any effect by tomorrow morning. Now I do need to tell anyone reading this that I'm willing to do this because it is a low risk thing for me. I am a large man (6'3" and 280 lbs) so any toxicity from those drugs is mitigated by my body weight. If I were more petite and frail, 'self-medicating' like this would be a Bad Idea. I am NOT recommending this. And I'll likely get yelled at by my physician when I meet with him tomorrow.
Stay tuned for the results.
In other areas, I spent much of the morning meeting and talking. By the time lunch rolled around, I was exhausted. I went home to rest my eyes. Three hours later, I woke up. The lesson: I can function with most of my life stuff, but I am fatigued far more than normal.
But, on the plus side, I was able to go without the eye patch for all day. Later in the evening, I did have to put it back on.
I did receive a couple of very nice "get well" gifts: one was an 'edible arrangement' and the other was a gift card to a nice local restaurant. So I'll definitely be getting my daily servings of fruit for the next couple of days and it'll be nice to treat Barb to dinner.

Bell's Palsy; Day Nine

Well the hope of last night has dissipated  I was kind-of hoping that I'd go to bed last night and wake up all better. Nope; didn't happen. Today was much like most of yesterday. No more tingling and no more twitching spasms. Though a friend told me that they had once experienced facial paralysis due to a migraine and they had experienced the spasmodic twitching before their recovery. So that seems to be a legitimate sign.
But. None today.
Huh. What happened? What was different yesterday that wasn't true today? Don't know - yet.
I have noticed that the area where I'm told the cranial nerve exits the skull is a bit tender which fits with the supposed underlying cause for Bell's Palsy being an inflammation of that nerve.
Got several Get Well cards in the mail today which was thoughtful and appreciated. OK; random thought: all the Get Well cards had glitter on them. I do not know what the linkage between the thought of "get well" and "sparkly" is.
Tonight, I had a meeting at church and the other guys let me shape the agenda so the bits that I needed to participate in were up front. That left me free to leave the meeting early. And I needed it: I was fatigued.

Bell's Palsy; Day Eight Plus

Just wanted to capture a couple of thoughts before the end of the day.

• Physician's appointment: When I was in the Emergency Room, I was told I had to check in with my primary physician within the first week. So a few days after the ER visit, I called the office, left a message, and said "Hi. I'm checking in." Why was I so cavalier? Well, there really isn't anything my physician can do. This is a viral thing and there are no drugs or treatments (that I can afford, anyway) that can be prescribed. What else is my physician going to tell me? "Yep. You got exactly what they told you at the hospital. Your recovery will not be accelerated in any way by your visit today. That'll be $200." From where I sit now, Thursday's visit to my physician (who, by the way, I really like and believe to be Very Very competent) seems like a waste of his time and my money
• What does recovery look like? Nobody has discussed this with me and I can't find any clues on the internet. By the way, that is one reason why I'm taking so much time with this series of blog posts. For others out there who will contract this condition, it can be nothing but helpful to compare and contrast their own experiences with mine. Still, I don't know what it's supposed to look like, feel like, or ... whatever when (if?) I start recovering - there is not any information
• Related to that last point; maybe I do know. This afternoon I related in the last post how I'm able to endure significant amounts of time without the eye patch. By this evening, I was rather comfortable. Hmmm ... that looks like 'improvement.' Sometime earlier this evening I started experiencing a new sensation: my facial muscles on the left side started twitching. You know, like those uncontrollable sort of random movements you can start making? Well it is like that. At times, it got to be a bit annoying. AND my facial muscles on that side started 'talking' to me - a slight soreness, as if I'd been smiling or laughing hard for a long time. ADDITIONALLY, my face started 'feeling' different on the left side. The sensation was as if my face were just a tad warmer on the left than on the right.

Summary: improvement detected; cautiously optimistic.

Bell's Palsy; Day Eight

Today started well in that I was able to go without my eye-patch for significant stretches of time. This is a good thing as the patch is beginning to irritate my skin. Going without the patch worked better in the morning. I don't think this means I'm getting better, though.
I wear the eye patch to gently hold a cotton 'round' against my eyelid and keep the eyelid closed. I do that because my eyelids were not fully closing and to prevent dryness and actual pain, it seemed better to keep one eye closed.
Going for times without the patch allowed me to drive short distances and regain depth perception. However, when I went too long without the patch (about a half hour), then I would experience tearing, dryness, and pain. Getting the patch, the cotton, and the strap placement right is tricky and takes a while to get right.
Once on and stable, taking it off again was immediately uncomfortable. It takes some time to readjust the eye as it has been pressed on and somewhat deformed so it's immediately out of focus and sensitive. Taking the patch off leads to an immediate sense of dryness and pain. Both eyes star tearing up, the tears run down the face and into the sinuses, I need a facial tissue to clean myself off and blow myself off. It seems to take about five minutes of care to get the eye so that it can go without being fussed with. Cupping my hand over the eye seems to help. Then I'm good for a half hour or more.
I went walking at the local mall both last night and this morning to stretch my legs. Walking the mall is something I do three times a week - I know it well. I found that walking with the eye patch takes concentration and found myself feeling fatigue after a walk that should have just gotten my heart going.
I had a breakfast with close friends and then a meeting at my office - again, people who know me well - and found that my capacity for conversation was lower. It is plain ol' physically more taxing to speak when half my face is just flopping along. I found myself fatigued by even pleasant conversation and realized I was beginning to get a stress-related headache.
By the way, to make my speech clearer, I have found that I can hold my hand up to my face. My technique is to place my finger tips on my cheek near my mouth and then press a bit up and back. That seemed to give the best effect - your mileage may differ.
One last thing that I have neglected to mention before: my hearing seems to be more sensitive in the left (affected side). For example, when I sneeze the sound seems nearly painful in that ear. I causes me to wonder if there are affected facial (7th cranial nerve) muscles that contract in response to loud noises to somehow lessen the impact of that sound.
Summary: symptomatically stable.

Bell's Palsy; Day Seven

This is Sunday. I'm a Pastor. It's my job to preach. The left side of my face is a floppy nuscience. When I talk, the right side of my face has to pull the left side along and I still sound like the priest in "Princess Bride."
So I'm in a fortunate ministry situation where the leadership, after a small scramble, was able to find a replacement for me to preach this morning. Whew!
But.
I was still responsible for our "Breaking Of Bread" early service. That service is oriented to the regular attenders and so they have lower 'presentation' expectations. So I thought it a good thing to get up in my full disability and speak about my weakness and Christ's strength (2Cor 12:9). It was hard to get through, physically. I actually had to wipe away drool from my slack lips a couple of times. I'm sure it was hard to watch. Yet a good point was made and I was happy to display my affliction in order to point people to Jesus.
After that, however, I was done. That whole thing, even though about ten minutes, was really exhausting. AND I'm not one who likes a lot of loving attention when I'm feeling badly. So Barb drove me home and I recuperated there.
Then I watched the Tigers game.

Bell's Palsy; Day Six

Today seems much like yesterday – which is a good thing. It means that my symptoms are not getting worse.

I have noticed that it is, oddly, more difficult to breathe through my left nostril. Apparently, having  muscle control actually help keep the sinus open. Who woulda thunk it?

Still drinking by slurping from the right side; though using a straw for cold liquids helps.

Otherwise, I’m trying to find things I can do. My son and I did some garage cleanup as the weather is getting better – I seem fully able to lift, carry, sweep, etc. I did some guitar playing – no degradation of coordination there.

So, at this point, I seem to have reached a nadir.

Bell's Palsy; Day Five

Well, today is my first day of full disability. What I mean by that is I realized I can't drive myself, I can't eat in polite company, can't speak without significant impediment, and my eye patch is no longer cool.

I would have gone to a breakfast appointment but cancelled due to my condition. As I mentioned yesterday, I just can’t eat in public – it would be too distracting for whomever I’m dining with.

My speech is noticeably slurred and it is difficult to speak. It is hard to understand me and it is hard for me to actually form my words.

I’m done with driving. I could drive in an emergency, but I now rely on my wife to take me around.

Here are a couple of thoughts:

·                     The nerve issue is a strange one. The condition is unique in that it is one of the few disease diagnosis that attacks a single nerve group. In this case, the seventh cranial nerve (hey, give me credit that I remembered that)

·                     The attack is thought to be viral – so there’s no real direct medicine that can heal, cure, fix, or resolve the matter. Just have to let it play out. The steriods merely attempt to encourage healing, not directly attack the disease

·                     The effect of the nerve attack is “valve-like.” Nerve function works one way, but not the other. Motor impulses do not get down the nerve pipe to the muscles, but sensation, feeling, and touch are not affected. Probably because they are different nerves. In any case, I can feel my wife’s kiss but I can’t kiss her back.

That valve or ‘diode’ like effect is intriguing.

Consider the analog to the human condition: we feel, but we can’t control. Much of human life is spent on the emotional, the sentimental, the relational, and the perceptive. We, even the most ‘rational’ among us, mostly “feel” our way through life. But so many things are beyond our control. We cannot make good things happen; we cannot prevent bad things from happening. Much of humanity’s sense of culture centers around our desire to control our environment and influence others. Many of our most profound thinkers suggest to us that control is an illusion. When we do, momentarily, achieve some kind of control, the satisfaction evaporates away. When tyrants achieve slavery of others (control), their souls are NOT thereby grown and made better. Yet, when we lose control, most of us lose the sense that we are fully alive. But we are still alive, because we can still FEEL pain, hope, frustration, blessing, and the like.

Feeling and control – life is tough.

Bell's Palsy; Day Four

            Today was a watershed. Symptoms continue to increase and my face is clearly noticeable. The last couple of days, my sense was, "OK, this is inconvenient, but at least I'm not becoming a slack-faced pathetic creature."
           Today, I'm a slack-faced object of pity.

            Another breakfast appointment with a retired pastor – so someone who is very sympathetic. This time I did not bother to eat the English muffin that I’d ordered. I realized that I could not - at least, not in front of people - eat: even with my friend.

            It was my regularly scheduled day for a spiritual retreat so I drove up to the place. That was rather challenging. I was able to drive effectively, but it took A Lot of concentration. Once I got to my retreat site,  adjusting the eye patch seemed a nearly constant thing. I realized that I was not going to get any better as the day progressed so after lunch, drove back. Driving took so much out of me that I napped for two hours. And I’m the guy who loves to do long distance driving.

            I realized that I’m now grounded.

            A couple of weeks ago, I had been invited to attend a poetry reading for tonight where one of my parishioners was participating. It was going to held in the downtown area. OK, *maybe* I could make it down there driving myself, but driving back at night would be a Very Bad Idea. I sent an apologetic message via Facebook that I would not be able to attend, but then my wife said she’d drive me down. So I went and, as much as I could enjoyed the event. But I could not be sociable with anyone else there except, briefly, with our friend.

            Now I can’t travel without being chauffeured.
So I cannot be sociable  cannot converse, cannot share a meal, cannot independently visit people, I cannot preach. As a face-to-face pastor, I'm suddenly unable to do my "job." As I mentioned on Twitter. This is the first time I have had an illness that kept me from doing my job, even though I did not actually feel bad.

Bell's Palsy; Day Three

            During the second day, I realized that I was going to have trouble eating. I had experienced some difficulty late during the first day, but I woke up and my lip control had deteriorated a bit more.

            Now I had an eye patch. Which looked rakishly adventurous. The patch held a ‘cotton round’ (used by women to apply or remove makeup) that kept my eye lid closed to prevent dry eye. Actually, that was a necessity. Without the patch to keep my eye closed, it was not more than a minute that my eyes would both start tearing up and I’d have to hold my left eye closed with my hand. I began to wonder: if I have to wear a patch for up to several months, what will that do to my vision?

            The other part of wearing the patch was the immediate effect: I was now functionally blind in one eye. Very inconvenient. Not only had I lost depth perception, but my right (uncovered) eye is not my dominate one. I did try driving and found I could do it. But I had to borrow technique from my old roommate back in college who once had a job teaching legally blind people how to drive. 

            Back to eating. I drove myself over to another breakfast appointment and found that I could not eat very nicely so had to figure out how to smoothly slide my bagel around my lips and not bite myself. It was tricky. Drinking coffee was a challenge, as well. I slurped more than I was comfortable with.

            At the same time, I realized that my speech was beginning to slightly slur.

OK, this is problematic for a guy who makes his living talking with people, frequently over a meal.

Later that day, that was confirmed as we had a dessert date with another family in the church. This time, cheesecake and coffee. Again, had to angle in the bite of cake so it would get past the unhelpful slack lip and then chew without anything falling out.

Symptoms are getting worse. I did talk during the evening and found my right (unaffected) left facial muscles were getting tired trying to accommodate and pull the other slack side along.

I found that my articulation improved when I took my left hand and pushed my cheek up a bit.

As our hostess was a nurse, she let me know that I would likely have symptoms for several weeks and should make plans now.

Being a pastor who preaches means that I could not, in the immediate future, do my job directly.

Bell's Palsy; Onslaught

So, this is different and I thought I should write about it.

I have been diagnosis with “Bells Palsy.” Wikipedia has a nice article on the subject (http://en.wikipedia.org/wiki/Bell%27s_palsy) which even my attending physician recommended.

First Day: About 4:00 PM, as I was sitting down to watch the season opener (Tigers vs. Twins; Go Tigers!), I was eating some potato chips. I noticed that I could not taste the salt on the chips on the tip of my tongue. At the time, OK, that was odd but did not rise to any level of concern. Later that night, as I was brushing my teeth, I was rinsing and realized that I could not spit with any control. It was as if my mouth was numbed from Novocaine, but without any of the tingle. Again, an odd thing which I did not pay much attention to.

Second Day: I woke and realized that I still had the numbness and started to be vaguely concerned. I had a breakfast appointment and thought that maybe whatever was going on would work itself out like the hundreds of odd little pains and phenomena of being in late middle age.

            I got to breakfast and ordered oatmeal. As I began to eat, I realized that I was having trouble with lip control and there was danger of some of my food escaping my mouth. As I was sitting there, I realized that my left eye was not acting properly, either. At that point, it came together: left tongue tip, Left lips, LEFT eye – and it seemed to be spreading. If you are a male of A Certain Age with a family history of heart problems, you are trained to be very sensitive about bodily phenomena occurring on the left side.

            So I left the restaurant and immediately headed home. I got there and after a brief discussion with my wife (“This is what’s happening. Am I being overly sensitive or particularly wise?”) we decided to get over to the emergency room. We went to the Wm. Beaumont facility in Troy and they took my story seriously.

• Lack of control in left face: lips and eye lids
• No pain or immediate discomfort
• No gross weakness on one side
• No mental confusion (or, at least, no more than usual ;-) )

They listened to my symptoms, took an EKG, and then walked me over to the ‘serious’ side of the emergency floor – which I took as Not A Good Sign.

            I got into a gown and a physician and a resident came in to see me. I kinda liked that because that meant I had a real experienced physician, as well as one very recently trained who was likely eager to impress the older one with all their fresh knowledge. The older gal had me tell my story again and the younger one performed a series of tests to determine if I had any gross weakness on one side compared to the other. No differences.

Was I numb in any affected area? No, I could feel touch and other sensations on my face.

They checked my ear canal. Apparently, there is a herpes variation that can cause numbness like this but will leave some lesions inside the ear. Nothing there but the wax that is usually present.

The older physician did most of the talking and was observing my face. She said there was a noticeable lack of movement on the left side.

At this point, it seemed like they had pretty good certainty. There was no stroke; there was no “T.I.A.;” episode; there was no sign of herpes; and all the symptoms pointed to “Bells Palsy.”
In summary, Bells Palsy is a 'diagnosis of exclusion:' if it clearly isn't A, B, or C - it is D. It is a viral attack on a specific nerve (7th cranial) that causes inflammation and therefore, loss of muscle control. It is temporary, usually (!).

I was told that, at the bear minimum, the best I could hope for was recovery within ten days and the symptoms could (would?) get worse. Likely recovery would be in the order of a few weeks.

However, in the meantime, there were some things I could do. The physician immediately gave me a few steroid-like pills and prescribed a “21-course” over the next few days. As this condition is believed to be due to inflammation, the steroids (acting as an anti-inflammatory role, rather than preparing me for a career in major league Baseball) can be helpful. She recommended I take care of my left eye as there is danger from it becoming exposed and dry; to massage the left side of my face to try and retain muscle tone; and to follow up with my primary physician (with whom she went to medical school) within the week.

That was my first day.