Perfect Imperfection

First, the good news: Brianna is making great strides in her training as a service dog. We are still working on basic obedience and public exposure. She comes to all of my classes with me, and my students just love her. She behaves perfectly in class, on the bus, and on the train (though that can’t be said of her all the rest of the time!)

The other good news is that I now have a case manager through the Department of Aging and Disability (DADS). By the way, I’m a client because I’m disabled, not because I’m old! J My case manager, Charles, has approved me for four days (14 ½ hours) per week of in-home assistance. This will cover cooking, cleaning, grooming, and laundry. What’s interesting is that a couple of years ago I would have viewed this development as ‘bad‘ news instead of good. It’s amazing what happens to your attitude when you really need this type of assistance.

The not-so-good news is that the defense of my dissertation has been postponed a couple of weeks. I was desperately trying to finish my proposal to get it to my committee members as soon as possible for the presentation coming in just a couple of days (they should have had the proposal a couple of weeks ago!) Well, my advisor and I were shooting drafts of the proposal back and forth by email, trying to get a final version out by last night. While frustrated with the editing needed, and excited/overwhelmed by new findings, my brain just froze. Massive confusion set in, and I could barely put two words together let alone write logical arguments regarding molecular neurobiology. I panicked. I could just hear my physical and occupational therapists telling me to take a break for a few hours and come back later. The words of the neuropsychologist who tested my cognition and fine motor skills re-echoed her warning that this feeling would happen and to seek the help of someone else to help me solve new problems. The dilemma was that I literally didn’t have the time. I couldn’t follow the advice of my therapists on how to deal with my MS and still meet my deadline.

I was so upset, yet I calmly called my professor and she graciously allowed me to re-schedule my proposal presentation and told me not to stress out about it. This unfortunately will most likely push my graduation from August to December, but she and my committee have been so supportive and protective of me. They were great, but I couldn’t handle it. I felt like such a failure. Recently two of my colleagues have informed me that I am known as “the writer” of the lab, yet I couldn’t crank out my proposal in time. My goals, my future, and worse yet, my sense of identity were slipping out of my control.

Before re-scheduling, while I still struggled to finish, I kept praying and asking for help. I asked God for clarity and peace of mind. I think that’s why I felt even more like a failure when I still couldn’t finish on time. Why didn’t I get the help I needed? It was only after I had re-scheduled and my professor had comforted me to not stress out over this, that I then remembered that my goal lately had been to pray, “Thy will be done, not my will.” Then today I was reading and found a wonderful quote in this month’s Ensign:

When someone has an ailment or an illness and they are healed as

as the result of a blessing, their faith is being strengthened. But for

those who aren’t healed but continue faithful, their faith is being

perfected. The first is a faith-promoting experience. The second is

faith-perfecting.

So I guess that means my imperfection is perfect! J

Pride and Service

Last Wednesday I received my new Golden Retriever puppy, who is to be trained as my service dog. Her name is Brianna. I have two sons, Brian and Steven; and when Steven was little he named his female Golden Retriever "Stephanie", so I felt I would be remiss if Brian didn't have a Golden "named for him" (kind of!) Okay, it is a little silly, but I also like the name.

She is beautiful, and probably has the sweetest nature in a dog I've ever seen. She is currently training with Shadows for Life, about an hour from my home. She should be ready to come home in about 4 weeks, but the training will still continue. Michael, our trainer, says this is a process that will continue over the next few years. Of course, she will be able to travel with me in just a month or two, but polishing her skills (and adding new ones as needed) will take time.

I have been having trouble with severe muscle spasms lately. There have even been a couple of times that my limbs and fingers would get pulled into weird contortions and I would be "locked" into that position - unable to move or summon help. One of these times, I had to be taken to the hospital, so I could receive Dilaudid for the pain (the nurse told me it was better than morphine, and a few seconds later I discovered it was true! Good stuff!) and also some Zanaflex for the spasms. I have to admit these times of intense muscle spasms and temporary paralysis are scary, and that is one of my main objectives for getting a service dog, at least she will be able to get help for me.

Maintaining my independence is my number one priority. Of course, every MS patient is going to say that; but I have always been extremely independent, taken care of others, and I HATE asking for help. Just ask my major professor who, for the past two years, has been urging (almost commanding) me to get undergraduates to help me finish my research (I refuse). Just ask the nurses when I'm in the hospital who literally have to lock me in my bed and put the alarm on so they'll know if I try to get out by myself! Since I'm considered a serious potential "fall risk" I'm always on strict orders to not do anything by myself, to ring for the nurse. I HATE that, and I usually won't do it. You would think my nurses would like my independence - makes their job easier! But they only complain about how stubborn I am and my need to do everything for myself.

While I am always touched by the gesture of a stranger or a friend to help (and I almost always graciously accept), it does something to me deep inside. Just last week a man at Church told me that just maybe God was using me and my disease so others would have the opportunity to serve. "It's kind of like you're an angel on Earth, allowing others the opportunity to earn blessings." It's a nice thought, very nice, and it actually does help to think of my MS that way - that maybe some good can come from this; but still.... I miss my independence.

When I have to ask for help, I feel a tiny piece of my dignity fade away. Perhaps it's not really my dignity, but my pride. Maybe I'm too proud. I know this not only affects my self-esteem but my relationships with important people in my life. A dear friend of mine came up with an idea to try to help me a few months ago. As touched as I was by his gesture, it was very difficult to agree to his idea. I almost didn't. I feared that I would lose some of my dignity, as the idea was to ask for financial help from others to help pay for treatments and devices that would help me maintain my independence (e.g. walking). I didn't want to feel like a beggar. He assured me that I wouldn't be the one who was "begging", my friends would. How could I turn down such a generous gesture? Against, my own feelings of pride, I accepted this offer of service.

Of course, with any project of this magnitude there are difficulties and stumbling blocks, elements that are out of my control (there's that need for autonomy I'm so famous for); but more importantly it seems that my primary fear is coming true. I see this idea morphing into exactly what I didn't want - an increased dependence on others and a decrease in my pride and dignity as my role/s in this endeavor are beginning to change. I'm afraid I'm now becoming the beggar. I'm torn. Is this a test? Am I supposed to break free from the sin of pride and allow him/us to benefit from the blessings of service? Or am I supposed to stand up for myself and try to maintain what dignity and independence I still have? And what effect (if any) will my decision have on our friendship? This is a very old and dear friend, and I would rather suffer my own hurt feelings than hurt his - hmmmmm, maybe I just answered my own question! :-)

But on a lighter note - I have Brianna as a new facet of my life. As a "service dog" she will indeed be providing many services and will help me maintain my independence even longer. She will also be a constant companion. She will rely on me for her survival, probably even more than I will rely on her. That will actually provide me more dignity. And she's a dog! Pure, free, unconditional love - it's a wonderful thing.

I will try to keep up on my posts more regularly now as we embark on this journey of the training of a service dog, actually it's both of us who will be being trained. I wonder which of us will learn the most?! :-)

Roll Softly and Carry a Big Stick

The Americans with Disabilities Act (ADA) mandates that all people riding public transportation in a wheelchair need to be secured. Often, if I am traveling only a short distance I will try to talk the bus driver out of tethering me down; but the best drivers will always insist on buckling us in. I always viewed it as a manner of protecting us, the disabled; but one driver explained it very succinctly one time: "If I have to slam on my brakes, I don't want you to come flying down the aisle and hitting me!" It made sense, and I started imagining scenarios where there could be even a very minor traffic accident, but with my chair not fully secured, it could cause some serious injuries to those passengers around me.

Well, today I was on the way to my neurologist at the University of Texas Southwestern Medical Center; this medical complex is huge. It has a medical school, four hospitals, and many professional medical office buildings. It is a very busy place, so all of the six or so different bus routes that serve it are always jammed full of passengers. Today after I got into my place, I was trying to secure myself with one of the seat belts, but am always unable to reach the one belt on the floor. The bus driver was completely ignoring me so this woman started to help me and made the comment that he (the driver) just wasn't going to get up and help me. He took off with me untethered and the woman still standing in the aisle. At the next stop I requested his help and he yelled at me and then got up and started chewing me out saying that the belts didn't work. Well, there are three separate ways to secure the chair, and there are two wheelchair areas, so I wasn't believing that all six seat belt or hook & tether systems weren't working. I even pointed out to him the obviously functional ones in the area across from me. During this time I could hear people saying stuff about me, one lady complaining she would be late for work, and other rude comments. While I understood where she was coming from, I saw the bigger picture.

Well, before I knew it I had turned around and began yelling at a bus full of passengers! I couldn't believe it. I knew that this could be a dangerous move on part (given the neighborhood and some of the passengers on board), and I also knew that I was just adding fuel to the fire but I seemed to be on automatic pilot. All I heard was my voice yelling at them, "Look! I'm already in a wheelchair, I have nothing to lose! I'm trying to protect you guys!!! If something happens and I go flying, YOU are the ones that are going to get injured. I'm already damaged. What more could happen to me?! So stop talking about me behind my back!!" As soon as I finished I expected an outpouring of laughter and ridicule, but there was just silence. There were no more rude and impatient remarks. I was shocked that they actually seemed impressed and listened to me. Most likely they were shocked that the "disabled woman" wasn't as meek and frail as they thought she was!

The funniest part was when one of the men I was especially yelling at later made his way to the seat nearest me and started talking to me. He apologized for being nosy as he asked if he had just seen me on television (I had just been on a local station a few days before, so I groaned and thought that's what he was talking about). Then he said, "Aren't you the woman whose ex-husband shot her?!" I answered that I was not. Then he apologized again and asked me if I had just come back from Iraq, was I a disabled vet? I told him no and bluntly told him I had multiple sclerosis and left it at that. It was only hours later that I saw the humor in his questions. Evidently my angry tirade at the passengers on the bus left them with only two possible scenarios for a disabled person who would do such a thing: I was either a woman who could provoke her husband to shoot her or I was a injured soldier back from fighting in a war!!

See, even if you do have a physical handicap, you can still make people believe that you are a strong and aggressive woman! :-) I think it's hilarious. Normally, I would have been horrified that people would view me in any way less than that of a soft, feminine lady; but to be honest it was a nice refreshing change from being viewed as a helpless "cripple".

Dallas is a large city, but maybe my reputation will precede me and the rumors will grow: That's HER!!! She's the woman that killed a man with her bare hands, even AFTER he ran her over with his Hummer and broke both of her legs! LOL

Just remember, everyone has some sort of handicap, in some shape and form. But more importantly, no matter what handicap someone may have there is still a part of us that is strong and is able to take of ourselves, no matter what.

Sweet Relief

I'm addicted to sugar. Plain and simple. I know better, yet I still eat too much of it, especially if it's in the form of chocolate. However, I've been developing this theory that since sugar and caffeine, which I've already easily given up again since I used to be LDS (Mormon), are so stimulating to our nervous system, I believe that there are certain symptoms of multiple sclerosis that can be exacerbated when too much sugar is eaten. Of course, this is only my personal experience (though there are some others who share this view).

I used to have chronic trigeminal neuralgia (TN), an **extremely** painful condition involving one of the cranial nerves that innervates the facial muscles; it is sometimes referred to as "The Suicide Disease" - OUCH!!!!! I have even been hospitalized and put on morphine for this. Then I started noticing that sugar and caffeine would trigger the pain. I began abstaining from both of these neural stimulants and it helped immensely. However, I still had some pain from the TN, so my doctor gave me tegretol for it. The tegretol helps a lot; I still have some breakthrough pain, but it helps so much I have been able to eat sugar again. (I still refrain from caffeine because any time I have it it feels like a lead pipe is being shoved through my brain!)

So lately I've been wondering if the sugar I eat can increase some of my other MS symptoms. I also have these seizure episodes, where I become nonresponsive and my muscles become extremely weak and I am unable to move. I am able to hear those around me, but I cannot respond. The Keppra I take helps immensely, but I still have these episodes sometimes. My dissertation advisor once remarked that it seemed like I was more prone to have them when I ate a lot of sugar. Well, today it happened again. I had two doughnuts for breakfast (oops!), and about an hour later I had one of my episodes. Luckily someone caught me before I hit my head on a file cabinet.

I am now going to keep a personal "lab notebook" and journal my daily activities and diet along with my MS symptoms. I know, many patients already do this and I had been advised to, but I didn't want to. I hated giving this disease any more of my time than it already had, but now I'm curious. I will begin trying to drastically limit my refined sugar (we'll have to see about honey and fruits) and see how it goes. In addition to managing the pain, I believe there will be a marked improvement in the number and severity of these seizure episodes.

To be honest though, these episodes are so far and in between that I'm not sure that's enough motivation for me to give up chocolate and other desserts. I need more motivation. (It's true - I'm addicted!) Therefore, earlier today I emailed my neurologist to see what she thought of the idea of halving my tegretol medicine, so that perhaps I could get enough breakthrough pain of the TN to motivate me, but an amount that could be managed with the sugar abstinence. Trust me, the pain from trigeminal neuralgia is ample motivation to not eat sweets!!! My mother thinks I'm crazy to gamble with such severe pain like this, but I really think the sugar is messing with my other MS symptoms; and I'm being honest here - I am just too weak to abstain any other way! It's sad, but true.

That's the way I am. I'm strong enough to control my vices in big decisions but not in the tiny moment by moment ones. For example, I do not subscribe to cable or any other service that will bring televised programs into my home. Why not? I *love* television (CSI, FBI files, Two and A Half Men, British comedies, Discovery channel, etc. etc.) I would watch tv all of the time. I would lack the willpower to just turn off the tv when a show I wanted to watch would come on; but I can control it from the grand scheme but just not having it in my home. Likewise, instead of saying "Hey eating sugar could cause some problems for me hours or days from now, don't eat it!" I have to have immediate agony. I'm like a rat being trained in a maze with electric shocks! So sad.

I will be interested in seeing what my neurologist has to say about this. She is wonderful really, and is always willing to indulge me and listen to my opinions. I am a difficult patient sometimes because I know just enough neurobiology to make me dangerous, and I can be very opinionated in what I want when it comes to my health care. Fortunately, my doctor appreciates this and we get along very well. I feel very blessed to have her as a member of my health care team.

Roll with the Punches

The symptoms of multiple sclerosis can vary greatly from person to person; but there is one universal truth for all MS patients: you wake up in the morning never knowing what to expect! I once read one man's account of how he dealt with it, he said that every morning when he woke he would sit up in bed and do an "MS inventory" before getting up for the day. I know exactly what he means... what is my fatigue level, will I be able to stand on my own, walk on my own? Are my hands working today, etc. etc.

Yesterday I suddenly noticed while getting ready for work in the morning that something was missing. It was that familiar sound of my right foot dragging behind me! To my amazement I discovered that I was able to walk almost completely normally; I was able to make both feet clear the floor as I walked - no more foot drop! I was so excited. I was even able to walk freely around the building where my office is - no walker, no cane. Normally I would not have been able to walk to the Ladies Room, even with my walker. I was giddy with joy as I showed off to my friends and colleagues. One of them even commented that I "looked like a queen" walking down the hall. Yet, I had this nagging feeling that none of them fully shared in my excitement. When I shared my ability to walk with my students, they applauded! THERE was the mirrored emotion I was looking for! I told myself that the subdued excitement from the others was most likely due to the fact that this phenomenon had happened twice before over the last two years; but I really believed this time was different. This newfound freedom even lasted the entire day, not like the other times that were once about 20 minutes, and the other, a couple of hours. This was the real thing. (I hoped.) Of course I overdid myself - walking as much as I was able. It just felt so good. I fell into bed last night, exhausted, but very happy and content.

I awoke about 4:30 this morning very tired but still able to pick my feet up and walk (albeit VERY slowly!) I went back to bed happy with the thought that after a few more hours of sleep I would be able to walk just like the day before. When I finally woke up to face the day I found that I was having difficultly moving my arms and hands, even more than usual. When I got out of bed I was saddened to discover that the foot drop was back and I was having to pull my feet across the floor again. It was as if yesterday had never happened.

While I enjoy these moments of normalcy immensely, and it's so good to know that given ample "juice" my body is still able to function as it should, I almost feel like I am being mocked. A fresh reminder of what has been stolen from me.

Late last year my physical therapist introduced me to an electrical stimulation (E-stim) product called Bioness. It took a bit of tweaking to hit the right nerves and find the right amperage, but with the E-stim I was able to walk without the foot drop. It was very exciting. We worked with the Bioness units for a few weeks, and I was convinced that the best Christmas gift I would receive that year would be the ability to walk normally again. Unfortunately, two days before Christmas Bioness called and I was told that the E-stim units were not covered in my "corporate policy" with Blue Cross. It can be very frustrating to have glimmers of hope that are then snatched away.

I think that one of the best ways to deal with any disappoint in life is to take that event and then put two extra "spins" on it. First, try to find some sort of silver lining or at least a lesson learned; and second add a dash of humor. I would say that the silver lining in being periodically baited with the hope of walking again is that word "hope". At least there is some hope. It may not work out, but at least I can believe the possibility exists. As far as the humor... well, I'll have to think hard about that one! Hmmmm... Can't think of one for me personally, but here is a cute joke. I got it from this website (incidently dedicated to MS patients) that has many good jokes about disabilities http://www.shof.msrcsites.co.uk/disa.html

So, there are these three disabled guys (one is an amputee, one is blind, and one has MS and is in a wheelchair). They are returning home from the Paralympic games in the Middle East and are flying over the Sahara Desert. The plane crashes into the desert, and they are the sole survivors.
After waiting quite a while to be rescued, they finally begin to start working their way across the desert in search of water. The amputee leads the way, and the blind guy pushes the man in the wheelchair. Suddenly they come upon an oasis of water.

The amputee goes into the water first, cools himself down, drinks some water, and then walks out the other side with, lo and behold, a NEW LEG!!!! He is so excited and encourages his friends to do the same.

The blind man offers to help the guy in the wheelchair get into the oasis, but the guy refuses. He stubbornly insists he can push himself; so the blind guy rushes into the oasis, cools off, drinks some water, walks out the other side, and lo and behold, HE CAN SEE!!!

The guy in the wheelchair is now REALLY excited! He pushes with all of his might and wheels himself into the oasis. He cools off, drinks the water, and wheels out the other side. Lo and behold, he has FOUR NEW TIRES!!

Which reminds me, there is something wonderful that is happening today. My mother is taking me to get new batteries for my powerchair! This will help me immensely (see next post for why!) I am very grateful to have family in the area that are able to help me do the things that I cannot.

Making a Bad Day One of the Best Days Ever

Well, the batteries for my electric wheelchair are basically on life support - whenever I pull the plug I only have a few "quality" moments to share with them. Since I kept getting stranded on campus when my battery died, I decided to be clever yesterday and use my manual wheelchair instead. I just tried to mentally prep for that.

BTW, I am a believer of mind over matter, so I get REALLY frustrated when that doesn't work with the MS. I was preparing for a first date a few weeks ago and jokingly asked my physical therapist Janice if she thought I would be able to walk normally in a 9 days. We laughed, but then I did lament that the "mind over matter" philosophy just didn't work here and I was having trouble accepting that. She reminded me that I'm an [almost] neurobiologist and I should know why it just didn't work in this situation. Still, one really likes to believe in miracles.

So, back to the wheelchair... I wasn't even able to wheel myself more than a few yards. (My arms have weakened almost as much as my legs). While this could have made for a horrible, frustrating day; it ended up being one of the best days I've had in a long time. I was so moved by how many people went out of their way to help. I had at least four complete strangers take the initiative to help (one of these was a woman that helped push me across the railroad tracks as I hurried to catch my train.) But there was one special person that really touched my heart.

I travel from Dallas to Denton on a commuter bus, and every morning I have the same driver (Ron). Our usual stop on campus leaves me with an approximately 1/4 mile trek left to my lab. However, yesterday Ron accessed the situation and after making his main stop, broke his route and drove me right to the front door of my building. Not only that, but knowing that I would have to catch another commuter bus that afternoon and that I would need another push across campus, volunteered (more like insisted!) to come back - on his own time, in his own car and push me to the bus stop!

I was so moved by that gesture. Then yesterday Ron informed me that he had talked to his supervisors about breaking the route and his plan for the afternoon, and they told him that if he had trouble obtaining a parking permit or parking spot (the norm for our school), that he should call them and they would get a supervisor to drive him over in one of their DCTA cars that have permission to park anywhere on campus. I was so touched by all of these people who were trying to help me. This morning I drove my electric wheelchair because Ron offered to drop me off at my door again this morning and since he's driving the afternoon bus today too, he's coming around to pick me up again later today. What a guy!

Let me be clear here though, especially for any MS patients that may be reading this and were looking for validation and not sugar-coated reality. MS sucks. A lot. It can be very painful, and it can affect your mobility, your vision, ability to swallow, ability to breathe, among many other things; but there is one silver lining - you get to see the goodness and light in people that many people don't get the opportunity to see.

It is unfortunate that most people are not offered these grand gestures of kindness (they should be). When I was first diagnosed with MS my mother was very angry because she felt that I had already had an extremely difficult life. She felt that it just wasn't fair (and there were many times I agreed!), but you know sometimes it almost seems that getting MS was my "reward" for these hard times. Hmmm... that sounded a bit crazy. It's just that despite the physical pain and limitations I truly feel more loved and blessed now than at any other time in my life.

Here We Go

I am starting this page at a suggestion of a friend. I have multiple sclerosis, and I was diagnosed while right in the middle of earning a Ph.D. in neurobiology (ironic!) These are both difficult life events but managing them at the same time.... Well, compare it to giving birth while competing in a triathlon!

Just yesterday my friend shared with me a recent fortune cookie message: "You will soon witness a miracle." and said he had to think it applied to me. I would like to think it might, but who knows? Miracles come in so many shapes and sizes and so many go unrecognized. There is a Chinese Proverb: "The miracle is not to fly in the air, or to walk on the water; but to walk on the earth."

Like so many people, I am a Type A personality and a list maker. A "successful" day means I've completed that list (to perfection). I began graduate school with the goal that someday I would find the cure for schizophrenia (a promise I once made to a friend and former co-worker who suffered from this disease.) I wanted to do something amazing with my life; but now I finally get it. Just to walk on this earth, live our lives, and overcome the obstacles that will, without fail, get in our way - THAT is the miracle. (By the way, some days are a lot more miraculous than others!)

This site is a place where I will be able to journal (and sometimes vent!) about life. Quite a bit will probably focus on the MS. I remember while going through that long, tedious process of being diagnosed a few years ago - it was scary. I searched the internet not just for scientific literature but for those with the personal experience. I think it really helps to be validated by other patients just like yourself; but I will also be throwing in new research and therapies I might hear about. I would like to mention here for anyone else that may read my blogs, that my area of research is developmental neurobiology. I am not a specialist in degenerative disorders nor am I a neurologist (MD)!!!

I am very lucky to have a supportive family and such caring friends. As my MS has progressed I have seen how caring people really can be. Before, like everyone, I just hurried through life barely noticing the strangers that walked past me. Now I am "fortunate" enough to sometimes need the help of these strangers, and it amazes me how many are willing to stop and offer this help.

No matter what happens to my body because of multiple sclerosis - the pain, the physical limitations, I know that it will be softened by these acts of strangers and the loving gestures of friends. That's what I call a miracle.