Therapy Notes

Today I met with the speech therapist again. My humming is definitely getting stronger. In fact, in sacrament meeting I tried humming the bass line instead of just mouthing the words. I did so-so. My range was only F down to say A, so I couldn’t do all of it, and the notes I did were admittedly rough. Not singing for a year has definitely taken me from marginal to poor. I mean, I can hear it, and I can usually settle on the right pitch, but it is certainly not effortless to get there.

Anyway, the therapist continues to remain optimistic. I asked her how many times per day I should be doing the drills. She said “At least twice.” I do them just about once every waking hour. Was that too much? No, the more the better. I told her about this strange inner ear pressure problem that I started having a week ago. It just feels like your ear needs to pop, and it happens every day and lasts for about 20 minutes. I said, “I’m just all messed up in there.” She said, “Your voice is not as ‘messed up’ as you think it is.” I found that as encouraging as it was funny. Do you think she can tell I’m a bit stressed over all of this? Unfortunately, the anxiety is counter-productive.

I learned some more practice techniques. She did tell me that I shouldn’t refrain from normal speech to relax the throat muscles. Instead, I am to try to learn how to speak minimizing their interference. Although I speak two languages, I only know one way to talk, so this is extremely challenging.

Primary Care Givers (in the Compassion series)

The place where I receive my infusions accommodates two patients. We sit in comfortable leather recliners and watch movies on TV while the medication is slowly pumped into our veins. My infusion-buddy the first time was an older woman. I don’t know how long she has fought MS, but it clearly has taken a greater toll on her than it has on me. She was so frail and had a hard time getting comfortable. Her voice was weak (but not as strained as mine!) I noticed something else, someone else actually, that led me to this insight. It was her husband. Seeing him and visiting with him it was evident that he was his wife’s primary care giver. He carefully helped her to the chair, answered all the nurse’s questions that he could, and although he did chat with me, I could tell that his first and overarching priority was her.

Who are these primary care givers? (PCGs for short.) Often it is a spouse but can also be a parent, child, or a dear friend. I have never been a PCG for anything protracted, but as I’ve taken notice and thought a lot about this, I have realized some things. For starters, rarely does a PCG choose that role. Who would? In most cases, they are thrust into it with little preparation and high expectations.

My wife admits straight up that she does not like the role. She has commented, “I’m no Florence Nightingale” and just feels inadequate as a comforter. But that doesn’t matter. For me, she’s it, comfortable or not. She says she is not naturally compassionate, but I know that to be untrue as I have witnessed her show deep compassion for our children every day, for other children and teenagers. Also, her compassion was unmatched for her sister who was grieving the loss of a child several years ago. For her, these are more natural venues for her charity than her husband who has generally been pretty self-reliant all our married life.

In case there are any doubts, I can physically care for myself, with the exception of occasional help with a cuff button. Worrier that I am though, I’ve thought about the possibility that some day this disease, or some other ailment, may render me unable to care for myself. I know that day may never come, but I dread it mostly for Kara’s sake. Once I mentioned to her my fear that someday I may become a physical burden to her. She said, “Oh, not to worry. We’ll hire someone!” It was said tongue-in-cheek, and maybe this will be an option for us, but though we hire 100 home health workers, her role as PCG cannot be hired out nor delegated.

Another thought: Although the PCG is yoked with this incredible burden, because of the illness/injury, 99% of concern and sympathy is for the afflicted. Often the PCGs can feel overwhelmed and alone. Who steadies the hard of the care giver? Who comforts the comforter?

Perspective

Over the past couple of years, I have learned that in the waiting room of a neurologist’s office, you will see other patients with a wide range of neuromuscular difficulties. In some people, like me, it is not readily apparent that there is anything wrong. In others, it is pretty obvious.

Yesterday as I was waiting for my infusion appointment an older couple entered. They were probably 20+ years my senior, and the man used a walker. His progress was slow, but he was doing it. When he neared his chair, he needed to move about a foot to the left. This sideways movement was laboriously slow. But he finally made it and sat down. I don’t know that he suffers from MS, nor do I know if I will ever be in that position, but I did feel sorry for him and grateful for my mobility.

A few minutes later another elderly couple entered, but this time the gentleman was in a wheelchair. Again, I don’t know what caused his disability, nor can I know if my fate will be similar, but I found it interesting to notice “walker guy” watching “wheelchair guy” and wondered if he was thinking the same thing as I was a few minutes earlier.

Teaching

I was looking at some stock quotes online yesterday morning when my Natalie (9) asked me what I was doing. I fielded an identical question from Amanda ten years ago when she was 7  I tried to explain the basics to Natalie but failed miserably. I know it is not important that she understand equity markets, especially at age 9, but my talk with her sister years ago ended up with Amanda buying a few shares of Disney stock. Yesterday’s discussion was brief and ended with Natalie throwing her hands in the air and saying, “I don’t get it.” I used to be able to teach my kids, but now my voice gets so strained I can’t talk. The number one reason I would want my voice back is for communicating with my children. It is very frustrating.

As I thought about this, my mind drifted back to a day maybe five years ago. My son and I used to enjoy working together in the yard, but at about age 10 other interests began to eclipse Father-Son time. I thought about how great it would have been to be a farmer a century or two ago. I’m not talking about having to butcher livestock or have a life span of 50, but just considering how awesome it would be to be able to spend so much time working alongside your boy. Oh, the things you could teach him!

Then it hit me. Although I can’t speak too well now, I can write. Now that school is out I basically have all day every day to teach my kids! I don’t mean to brag, but who gets to do that? Of course I have other things to do like my treatments and my therapy, and trying to figure out a way to make some money despite my limitations, but could I not spend a couple of hours writing each day for them? Keyboarding is not an inexhaustible resource these days, but still, I can write enough. I envision each of them spending 20 or 30 minutes with me every other day or so, having then read aloud the lessons customized specifically for them.

Monday I spent about an hour writing a story to explain capital markets to my nine-year-old. It has 11 very short chapters of about 100 words each. And there are pictures. It was challenging, but fun. Yesterday afternoon she read aloud to me the first four chapters. I’m not certain that it is sinking in, but it can’t be hurting. I also spent some time thinking of topics that I could write about to benefit the older kids. Some are religious, some secular, but all should be useful. My first wave of ideas included topics ranging from The Plan of Salvation to automating spreadsheets to Spanish grammar. Maybe I could teach Erika how to read music or I could share my thoughts on a university “General Ed” with Amanda. I could teach Natalie the rules of tennis and perhaps share a family history story with Ryan. (And I could sneak some love letters in there.)

Now, I am not yet at this parent-child mentoring Utopia. They might really resist it. Also, the list of things that I know well enough to teach is pretty short right now. I’m hopeful that once I get going more things will come to mind. Maybe some of these little lessons will be “blog appropriate” but I imagine that most of them will just be rather child-specific insights. We’ll see.

Waiting for Wistful

Like all kids, I periodically got sick. I was perhaps a bit more prone to bronchial illness than some kids, but I was generally pretty healthy. I didn’t like being sick and I didn’t “fake” it to miss school, but notwithstanding the physical discomfort there was a peculiar euphoria in the morning when it was clear that I was staying home. The whole day stretched ahead of me – baseball cards, Mom caring for me, a lot of cereal, and morning TV (The Price is Right). The mornings were nice, but the afternoons were depressing as my brothers returned from school and played outside. The reality of the sickness hit me. The evenings were nice though, especially bedtime. My parents would set up the Vick’s Vaporizer in our room and it emitted that steamy Vick’s smell. To me, that was the smell of parental concern and looking back it seemed to envelop me.

One night following a pair of sick days, I felt much better and planned to return to school the following day, I remember feeling a twinge of wistfulness that this turn of the Vaporizer and watching a.m. game shows was behind me. I mean, I was glad to be well, I just realized that I would miss the little bright spots.

I can’t help but wonder how I would feel if I got well enough to return to work now, ending this extended holiday. I don’t watch daytime TV, and I don’t have a Vaporizer, but surely the bright spots have been dear to me, and I would miss them. (I hope to find out some day!) For the record, just because I try to see the silver lining in this trial, does not mean that I like it. I would be thrilled to have it lifted and to return to work and my “normal” life, even though I would just be normal Dave and disqualify myself as a good “Sunday School comment.”

(Although I know that even if every neuron were completely restored that I will never be the same again. I mean that in a good way.)

Hurdles

In January I applied for Federal Disability. Any payments that I would get would lower my other disability payments dollar-for-dollar, but still, there are advantages to being on this program. Namely, your earnings are “frozen” for social security benefits determination and after two years you become eligible for Medicare.

I had heard hat they deny everyone’s first request. (Maybe there is a job for me, I could do that!) So I wasn’t terribly surprised when I got that letter three months letter. In April I was contacted by another company that my disability insurance carrier hires to appeal disability claims. This past week I got my second denial. The appealing company dude called to tell me that this is protocol, and that the next step is to request an in-person hearing. He said that this is usually where the claims are granted but that it will likely take 12 to 18 months to even get a hearing date. A year? At least? (By the way COBRA benefits only last 18 months.)

I figure that these denial hurdles and protracted hearing dates are for fraud prevention and stuff, but still, it seems a little silly. They say they “carefully reviewed” my medical records. What we’re they looking for that they didn’t find? My sense of smell seems unaffected? Maybe that is it.

I'm not an "entitlements" kind of guy, but I do know that for 15 years I paid a lot into the program, and that I am truly disabled from my job, any just about every job I can think of.  I'll keep you posted; but don't hold your breath!

Another Compassion Insight

As I have mentioned earlier, when I was faced with providing comfort to another, especially emotional comfort, I was awkward. Now that I have had some stretches on the other side, I have gained some insight.

I was warned that one of the possible side effects to my first MS medication was depression. I hoped that it was just the idea of having to give yourself three shots per week and not some chemically induced sadness. It did worry me and I was on guard for it. I’m not a depressed kind of guy, and depression leads to nothing good. Notwithstanding my vigilance, I did suffer from bouts of depression. It wasn’t real serious or life-threatening, but it was deep enough for me to learn some lessons. I am on a different treatment now, and I feel that this depression is behind me.

Here is the thing: when I had feelings of say, worthlessness, I knew cerebrally that they weren’t justified and I had no right to those feelings, but nonetheless I had them and they were real to me. I didn’t know why I felt that way, but nonetheless I did. Even if you have the presence of mind, when thus afflicted, to realize that the feelings are likely a medication side-effect, you still have them. Maybe an example will help.

Let’s say that you have a friend who is a great mother, but she is depressed and tells you she feels like a terrible mother. What do you say? I think our natural inclination is to disagree with her, tell her she’s crazy, she’s a great mother, and that she shouldn’t feel that way. OK, first, telling someone suffering from a psychological issue like depression that they are crazy is probably not the best thing! ;-) And the fact that she shouldn’t feel that way doesn’t invalidate and magically evaporate her feelings.

So what would be helpful? I don’t exactly know, but perhaps you could ask why she feels that way. I have no formal counseling or psychology training, but it seems like a good idea. By doing this, to me it seems that while you are not agreeing with her negative feelings, you aren’t dismissing them out-of-hand either. Again, true or not, justified or not, the feelings are real to her. She may not even know why she feels so, but by asking her you not only show you care, but you force her to consider why she feels that way. Then, if you can, provide her with specific counter-arguments. For example, “You always show patience with your kids” or some other specific. Vague compliments like, “C’mon, you’re a great mother” sound hollow and because you fail to cite specifics or examples, she may assume that you can’t think of any reasons either and the feelings even deepen. It isn’t fair, you’re just trying to be nice, but dismissing the feeling or countering it with vague feedback doesn’t really help. Does that make sense?

I hope this insight isn’t too narrow in scope to be of any worth, but in case someone in your path is sad, hopefully this will help. I also hope that this "insight" in no way alarms you. I am fine.

Good Morning

This morning when I was taking Erika to her rendezvous for girls camp, I realized that my vision impairment seemed almost imperceptible. Mornings are always better, and I wasn’t trying to read anything, but this was encouraging.

I had a productive and happy morning at my PC, while my two ladies slept in. Later, as I was strolling through the kitchen, I noticed that my walking seemed steadier than it had in months. I try not to compare every symptom to how it felt an hour ago but they definitely wax and wane. I try to remember this when symptoms are bad; they do get better. By the same token, I try not to get too excited when I have a good stretch, but I can’t help but be grateful. Nor could I help taking a few extra spirited spins through the downstairs. I even tried a little jog. OK, there are limits to this “feeling good” morning, and although I didn’t fall or anything, I found those limits!

Another Good Thing

One of the possible MS symptoms is pain. Montel Williams says that he suffers intense pain in his feet each morning. Others report living in constant pain. Knock on wood, but I don’t have this. My legs feel very sensitive, and this at times can be somewhat uncomfortable, but they don’t hurt. Maybe that trial is looming, but for now, I’ll be grateful.

To anyone that does live in constant pain, for whatever reason, I'm sorry and I wish there was some way I could help.

The Cycle

I have to be careful because sometimes, if I’m not feeling well, I forget to eat. Or I feel too tired to eat.  If I don’t eat, any fatigue is exacerbated of course. Being more tired, I really don’t want to eat. Kara called me on this yesterday. It wasn’t a terrible day by any stretch, but I had unwittingly gotten into this little cycle. I just felt kinda wiped out and defeated. By 3pm she asked what I had eaten that day and I realized that I had only had a piece of coffee cake. No wonder!  (And Kara made the coffee cake; if she hadn't I probably wouldn't have eaten anything.)  I used to be such a glutton, now I so rarely even feel hunger.  I still enjoy meals and eating (sometimes) but I have to remember to do it.  Today I am feeling (and eating) better!

One Small Symbol, One Huge Difference

I just heard from my HR department.  My portion of the bill for my infusion treatment is $20, not 20%.  This news seems too good to be true, so I'm a little skeptical, but still...it does not look like I'll have to suspend treatment.

Quiet Day

I am ten days into my voice therapy and I have seen only very minor improvement. But I’ll stick with it. I return Monday. I’ve been thinking about the problem a lot. How did my throat muscles get so constricted and strained in the first place? They say anxiety could be a factor. I admit that I’ve had plenty of that. I used to use tennis as a stress outlet.

But think there is a more straight-forward explanation. In late 2006, I remember feeling frustrated at choir practice that I couldn’t seem to generate sufficient volume. Some days I was half of the tenor section, and the other was a Deacon. Our poor choir director needed more volume from us, but my volume knob seemed to be broken. I knew my legs were weak, but I hadn’t considered this weakness to be due to MS. Now I am certain that it was. In fact, I think the “weakness” was in the diaphragm that pumps air through the vocal box. And it wasn’t limited to singing. The body’s natural reaction to diminished vocal volume is to use throat muscles to compensate. A year and a half later, guess what? Those muscles are extremely strained. Not only do I still have the diaphragm weakness, but my larynx is a mess. Result? I get about 30 syllables an hour. After that, it is bad. I think I start straining from syllable 1. I don't know how to not do that.

My hope is that I can slowly undo the throat problems. I don’t know if there is anything that I can do to address the diaphragm weakness, sit-ups? But it is still working. If I can undo the larynx strain, I may just have to get used to being a soft-talker, or maybe even a soft-singer.

Yesterday I did a lot of talking, relatively. I took several phone calls, I wanted to teach the lesson in FHE and then I had to help Ryan prepare for his Spanish final. It was bad. It actually started hurting. Tomorrow I am seeing a friend that is here from Utah on business, but today I don’t have any “talking” scheduled. I’m going to try to give my larynx a real break. I mean, I’ll do my therapy drills and such, but let’s see if a break will help. I’ve been up for over two hours and I have used only 23 syllables.

I'll keep you posted.

Principles

(This article, like the last one, isn’t about MS or optimism at all. They are about parenting in the gospel, and because they are serious and somewhat personal, so I’m going to share them here instead of on my other blog.)

I think that I have done a poor job of teaching principles to my kids. As mentioned in the “Fasting” post, they know the rules of fasting, but I don’t think they “get it” yet. This is manifest in the whining and complaining, the exaggerated sighs and head-banging on the pantry door. Without a testimony of the principle, we are prone to unduly shortening the fast, “cheating” or rationalizing (like, the bread not used in the Sacrament is Holy Bread is therefore OK to eat during Sunday school.) Obedience to the rules is important, but without the testimony underpinnings, what is the point? It isn’t my goal to starve my kids once a month. And besides, they won’t always live at home.

With this thought in mind, I fielded a disturbing question Sunday afternoon from Amanda. For those who don’t know her, she is 17 and she has always had a keen sense of right and wrong and happily, she clings to righteousness (with the exception of some intolerance of her brother.) She is so good and admirable in so many ways. She is a model Laurel. But after church Sunday she asked me if it would be OK to “sit outside by the pool and enjoy nature” on the Sabbath. I told her that I didn’t see any trouble with that, but I did not approve of Sunday sun-tanning. She began to plead her case. You can make a pretty good case for this, if Sabbath day observance is just a list of prohibitions.

However, to me the Sabbath is for worship, spiritual development, service to others, and family bonding/ togetherness. It is to be a day to rest and re-charge. But even saying this much, you can justify anything you want to. You can “rest” while tanning and you can bond with family while frolicking in the pool or eating out. I think that the overriding principle is holiness and a day to rest from our regular activities. If we truly make it a day that is different from the other days in the week, we will be blessed. The Sabbath is for us. I need to figure out a way to teach this to my kids. In the meantime, we will continue to enforce rules! (Of note, she did not “lay out,” and did not even pursue it beyond the initial probe. Maybe she does understand the principle on some level.)

Fasting

Today was Fast and Testimony meeting. I really wanted to share my testimony on the power of fasting. On several occasions, I have seen the singular power that a sincere fast yields. Not only can fasting and prayer result in external miracles, but something happens inside too. When our physical cravings are suspended for a short period, and our fast is accompanied by prayer, there is an indescribable spiritual sensitization.

But I didn’t get up. I don’t fear public speaking at all, or testimony-sharing. I was concerned that my voice is so strained it might be a distraction. I couldn’t risk using up valuable syllables and meeting time providing a health update to put people at ease, and without it, the severity of my vocal tone might cause undue concern at the least, and likely overpower any message that I would share. Besides, I live with the four people that I want most to hear it, and they are used to my voice; I could share my thoughts with them later at home.

I realized last night as we began our fast (and endured the weeping, wailing, and teeth-gnashing) that although we have taught our children the “rules of fasting,” I do not believe they have a testimony of the principle. For them it becomes a parent-inflicted evil that they must endure. Sharing my testimony with them doesn’t give them one, but it can’t hurt. Maybe then at least they would understand why I don’t dread Fast Sunday as they do. I don't mean to imply that I am Joe Fast Sunday or anything. Sometimes I forget to start with a prayer and out of convenience, I often don't fast the full 24 hours, but wait, maybe I've found the problem. If I have such a testimony of fasting, why do I cut corners? Do I think they don't notice? I can talk all I want (as a manner of speech) but actions speak louder than words.