David's Journal

When I was a kid I remember my grandmother telling me not to drink after dinner so I wouldn’t wet the bed. Yikes! It sounded so harsh but I always took her advice and reduced my chances of morning embarrassment. I knew my grandmother was right — she was always right!

When we are young we are taught lessons on how to control our bodily functions. We learn fairly early that when we get to the point where we do “The Dance”, we may have waited too long.

I drink like a fish, and not one of those small tropical fish either. I can polish off a two-liter soda in a short while, and wash it down with a glass or two of water. You see, I work at a laboratory where I’m responsible for tasting samples of beverages all day. A close restroom is my best friend; I can cut a path to the restroom in no time flat. When we remodeled our offices at work I made a strategic play to get the office closest to the bathroom, and I was awarded the coveted space. There are some victories in life that you just never forget. That was one of them.

It’s true. MS gave me tiny bladder!

Can you believe it? How ironic that a guy who “drinks for a living” has to go to the bathroom more in a day than others have to go in a week! As if bowing to an ancient curse, I often head to the bathroom skipping and jumping as fast as I am able. Listen, we all have challenges with MS and getting “tiny bladder” is just one of them, and for me, not the worst. So I look at the bright side: the constant trips to the john give me exercise that I might not get otherwise. Yes, I have turned my tiny bladder into an exercise plan. How clever is that?

I was excited when I found out my friend Pete was coming to town on a business trip. I planned to pick him up at the airport and take him to the hotel for his conference. We’ve been friends since college and it had been quite a while since we saw each other. He is one of the funniest people I know and I remember that he likes peanut butter and jelly sandwiches without the bread…yes, he tells everyone that this is his favorite sandwich. Whatever, Pete.

I picked him up at the airport and got out of the car to give him a big hug, you know, one of those “we are both guys and I will hug you as stiff as possible so it looks manly to others watching” kind of hugs. I walked towards him and blurted out “Hi…” and I forgot his name and he knew it because of the pause. He looked at me and said, “My name is Pete and we have been friends for twenty years.” Now, forgetting a name is pretty important to me. I remember his stupid sandwich joke and his first wife’s name along with his mother’s name (who I have never met) but his name was gone. This incident occurred five years ago and he stills calls me and introduces himself as if we were meeting for the first time. Glad he still has his sense of humor!

I sort of gave up on the name game and have spent time practicing alternative names for different types of people. For instance, I call my nieces and nephews “sweetheart,” “young man” or “favorite niece of mine” — it works. Business associates I call “sir” or “madam” and get away with acting more formal than I really am in normal situations. Others I call “sweetie” or “handsome” or “darling”…I have to at least remember to be aware of the situation. For example, calling your boss “sweetie” may not work well.

And names are just the beginning. I forget birthdays and appointments and personal histories for my friends and family. I try to take the high road and do my best to remember but how can I possibly remember the important things when the limited space I have for memory is taken up with my stored minutia? Could I get by if I forget that there are three packs of gum stored in the lower left drawer in my desk at home? Would I survive if I forget that Judge Judy is on at 5:30 pm, 6:00 pm and 6:30 pm in our viewing market? What if I couldn’t remember my entire ten digit frequent flyer number AND why in the world do I remember it anyway?

It could be worse, perhaps the names of my first dates would still be stored in my noggin or the names of my high school English teacher…actually, I do remember their names. You see, that is just it – I remember the stuff I shouldn’t and forget the stuff I should. So for me the trick is to get by as best as I can, working my way around my forgetfulness…and doing what I can to remember Pete’s name.

It seems that I now divide my life into two parts, before and after my diagnosis with MS. We all know that life brings us challenges and MS has been a real challenge for me. I always have the opportunity to find ways to overcome the struggles I have with MS — it is as if I am in the ring with a boxer named MS.

For those of you just tuning in, here’s how my “boxing match” has gone: In one corner of the ring is Dave, in the yellow shorts. In the other corner is Relapsing MS, a chronic autoimmune disease in the multicolored shorts. The ugly shorts move around the ring like a tornado in a hurricane. The referee, a neurologist, of course, comes out to the middle of the ring and waits for the bell (for the record, my bell rang in January 2005). The referee steps back, blows a whistle, and they come out swinging.

MS throws the first punch and drives a blow to Dave’s cognitive ability. Dave goes down for a minute, but counters with plans to take action to lessen the blow. Dave throws up a few sticky notes as reminders and looks for ways to improve his memory and cognitive problems. Rarely down for the count, Dave perseveres and pushes MS back into the corner. Dave lands a right hook into MS and sets the competitor back.

Dave continues to throw punches and forgets that he can fatigue easily, especially in the hot arena. With Dave looking sluggish, MS takes advantage and throws a few direct punches. Dave fights back by planning
his next moves and resting between his punches. He works hard to save his energy and shoves MS back into his corner, down but not beaten.

The battle goes on, back and forth, but Dave knows that if he strategizes correctly with thought and knowledge, he will find ways to stay on his feet, always determined to win. The battle is fought by using one strategy at a time and never giving up, even when the punches thrown seem like a knockout.

Dave throws a hard one and hits MS when it appears to be at its most fierce point in a late round. Not to be outdone, MS throws a low blow, knocks Dave to his knees and makes it difficult for Dave to get up on his feet. It’s the worst punch thrown yet. Dave reacts by pulling himself up by the ropes and walking around the ring while holding on, giving MS a run for the money.

MS shadows Dave around the ring as if to remind him he will be running from MS for quite awhile, but Dave already knows this. He gains strength as he fends MS off for several rounds. What a champ Dave has become by finding ways to fight MS. Dave knows the fight is complicated and sometimes fierce, but perseverance and knowledge will be the key to fighting the good fight.

At the end of some rounds, it looks like Dave will win for sure, but at the end of others, it seems like MS will be the conqueror. But no matter, at the end of each round you will hear Dave exclaim, “MS, is that ALL you got?”

When I was first diagnosed with relapsing MS, there were thousands of questions I had about the disease and how it would affect my future. I remember first wondering how I would change the layout of my house to accommodate my illness. Should I move closer to the hospital or find a house that has only one level? I suspect we all go through a similar thought process. Now that four years have passed, it seems this thought was only one of many that went through my mind. I make sure that I attend seminars, meetings and CHATS to stay grounded and current in my education about MS.

I have always been the kind of person that likes to stay busy. Since starting my company nearly eighteen years ago, I have learned that there is always something for me to do and I like it that way. I have slowed down some since I was diagnosed (to help maintain my energy level), but I still stay quite busy. Although I say I have slowed down because of MS, I secretly know that some of that “slowing down” is because of my getting older – I just hate to admit it! Working every day contributes to my well being and self worth and not working would really change my life.

When I was first diagnosed, I spent time in the hospital and missed work for several weeks. When I was released from the hospital, my number one goal was to get back to work as soon as possible. After being home for about a week, I received a call from the hospital asking if I needed help filling out Disability Forms. I was surprised to get that call and asked the woman calling why she thought I needed to fill out the papers. Although not sure, she explained that I had been diagnosed with MS and certainly I would not return to work. After hanging up the phone, I cried assuming that lady knew more than I did about MS. How I would carry on with my work situation?

I have found, through participating in MS Programs, that there is a misconception that an MS diagnosis is an automatic ticket to Disability status. It is a great feeling that there might be financial safeguards available if you need them.

I am lucky that I am able to work every day and in fact, I think I may work just a bit too much. I know that when I leave my home in the morning for work, I can leave work early if I get tired. I have friends with MS who also have jobs, and know that they can leave when they feel tired – they find ways so that they can keep their jobs and stay healthy. If we want to work and MS does not interfere with working, I think it is great that we have that choice. For sure, an MS diagnosis doesn’t automatically means that we have to apply for disability… it just isn’t true!

As much as possible, when I’m taking my therapy, I want to go about my daily activities the same way I did before I started my therapy. I would say that most days for me are relatively simple: I get up, go to work, go home, settle in, go to bed and start over again the next day. Surprisingly, my days follow this schedule with few exceptions and I think I like keeping it that way. In fact, I look for ways to try to keep that routine consistent while taking my therapy for relapsing MS.

What are some of the things I considered in choosing a DMD (disease-modifying drug)?

First, I spoke with my neurologist about the DMDs and which might be right for me. If every DMD worked for every person, this would be an easy process, but that is not the case. I trust my neurologist’s experience with different DMDs.I am always interested in my neurologist’s opinion, for every aspect of my health related to MS, and a DMD is just one aspect.

Next, I considered the profile of different DMDs. For example, with my travel schedule it would be more practical to take injections fewer times per week. I also asked myself if I could I manage the side effects that were typically seen with a particular DMD, or would that be too disruptive with my schedule?

Finally, I stay informed by reading the research and available information on all of the approved DMDs. I subscribe to several free magazines that focus on MS related information and make time to review the articles so that I stay up to date on DMDs and their successes (and failures). I figure that the more I know and understand about the DMDs available, the more confident I will be about the choice we made.

Choosing the “right” DMD is no easy task for anyone with MS. It becomes a balancing process where we measure our confidence with a DMD through research, and match that with our neurologist’s recommendation.

I have a wonderful relationship with my neurologist so I place great emphasis on his recommendation. Luckily, like everything else in regards to my MS, I look at the choices and find the right balance.

How tough can it get? I sat outside the store where I was getting new clothes for school and the pants I really wanted were not at this particular store. I had to get pants this same day and according to my mother, it was this store or no store! I had no idea how I was going to get the pants I wanted and no way to change my circumstances. How could I ever wear pants I didn’t like? It was not fair and I couldn’t believe how tough my life had become since I turned nine years old. Just then I figured out a way to delay the purchase by “negotiating” with my mother. Turns out, it wasn’t so tough.

Now that I am a “few” years past age nine, I’ve finally learned that negotiations are a constructive and effective way to manage all of life’s challenges and a sure way to keep your sanity. Certainly, we learn the art of negotiation early in life. I suspect I negotiated a bottle of milk (or two) as a baby by crying loudly. I probably negotiated a candy bar (or two) by acting out in the grocery store. Having mastered this art of negotiation early in childhood, I’ve put it to good use in my later years. For me, the trick has been to add “reasoning” to negotiation to alter the outcomes in a more positive way.

Summers in Louisville can be challenging sometimes because of the extreme heat and humidity. How do I get through it? I use my negotiating and reasoning skills. Since I cannot negotiate with the temperature, I survey the landscape and make choices based on my findings. It’s only tough if I have to cancel plans – I am always willing to change plans. For example, I work in my garden early in the morning and late at night. These times of day are cooler and allow me to enjoy the outdoors and clear my head. If I need to run errands, I choose locations that have up close parking and whose lots have shaded areas. When possible, I choose locations where I can make multiple stops with less outdoor exposure, like strip malls. I also consider twenty four hour operations and go early or late. I always try to be inside during the hottest part of the day.

Then there are days when I just don’t feel well. It would be easy for me to get in bed and lament about how tough I have it and how I wish I did not have relapsing MS. I use my reasoning skills for this as well. First, I survey the situation. I confirm that I do in fact have relapsing MS and at present, there is no cure. Then I analyze why I feel bad. Is it physical or emotional? If physical, I look for ways to alleviate the issue with simple skills or tips I have learned in classes or at support groups. I might take an aspirin for a headache or a muscle ache, elevate my legs if they are tired or weak, or schedule naps during the day. If emotional, I negotiate a truce with myself. I might call three friends and talk about everything but MS. Often that gets my mind off my “tough” issues and on to more constructive thoughts. Or I might start a project, ranging from a small house chore to planning a major fundraiser for our local MS Center. These projects help to get my mind somewhere positive. I also like to go see a movie at the theater. There is nowhere better than a theater to stay cool and get my mind in a good place (and eat lots of popcorn).

All of these ideas center on my negotiating with myself (either body or mind) into a place that makes my issues more manageable. I apply reasoning and decide what I can do to help improve my situation. I know that what works for me does not work for everyone. Go ahead and negotiate with yourself and apply appropriate reasoning – it’s worth it.

In 1992 I left a wonderful job making great money to start my own company. There were more unknowns in starting up a new company than I could count, but I decided it was worth taking the chance. My parents almost crumbled when they found out I left my job because they thought that I had the perfect job. And in a way it was. But I was learning to embrace change and adapt.

I am one of those people that get bored with the status quo. My first job out of college was at a flavor company where I was trained to identify different chemicals in food and beverages. I was a quick learner and very good at my job. So good that I became bored after only three years. I moved on to a better job at a beverage company where I was even better. Guess what? That was the job I left to start my own company. I used to think it was a flaw that I got bored so quick. But I learned that if I was going to be happy I needed to keep learning and keep being challenged. That’s why I started my own company, and ever since my goal has been to create change and learn to adapt. This philosophy served me well when I was diagnosed with relapsing MS in 2005.

At the time, I was a happy, successful business owner with 20 employees. I also got to travel around the world, and it was during a safari in Africa that my MS symptoms appeared. I was rushed home to the hospital. I couldn’t walk, I lost my vision. Work was out of the question. This was a change that I was not prepared to manage…or was I?

In the hospital, I called in two of my managers and basically asked them to run the company for me. I always hire smart and capable people and I had faith in them. They adapted because they had the tools, experience, and willingness to run the company. And I adapted by accepting my decision to hand over the reins.

When leaving the hospital I was faced with a lot of change. In fact, it seemed nothing was the same. I had someone with me twenty four hours a day to help me dress, eat, shower, and walk. They talked to me, read to me, and watched me sleep. I grew to enjoy the company, and as my health improved and their presence diminished, I found ways to adapt to my “new” daily routine. I created a social circle by inviting friends and relatives to dinner or a movie so I could spend time with them. When I started back to work I had to find drivers, and I adapted this into another social circle by finding ways to extend the ride by shopping or eating dinner on the way home.

In returning to work, I found an organization that was used to running without me at the helm. I loved it. For the first time in thirteen years I had time to do the parts of my job I liked. This gave me the confidence to travel and be away from the office more. I always “thought” my employees could handle any situation, now I “knew” they could. In fact, the company was thriving. This was a welcomed adaptation.

Each time I adapt to new change it gives me the confidence to change again. I look at it this way – when I do the same thing I generally get the same outcome, but when I change what I do, I generally get a different outcome. I like to take the chance that the new outcome is better; and if it isn’t, I can always change back.

Check back on February 9th for David’s next journal entry.

It’s funny how life works. Just when you think you have it all figured out things change and you get the opportunity to manage a new set of circumstances. I think that’s what makes life interesting. If nothing ever changed and you could plan everything perfectly there would be no real art in time management… and life would be pretty boring.

For example, I have a degree in Zoology which I had intended to be a stepping stone for a career in medicine. But when I decided not to enter Medical School, I carefully managed my time and resources so that I could put my degree to use in a meaningful way – and fast. At our house, if you intended to live at home after you reached eighteen years old, you either went to school or you worked!

When I was diagnosed with relapsing MS I spent a lot of time trying to find the blessings in having MS. I have discovered many and sometimes they hide in strange places. One of those is my ability to find humor in everyday life, which is one of the ways I make my days brighter, happier, and more enriching. This carries over to how I manage my time, which sometimes can be overwhelming, so I make it fun.

How do I do this? Simple, I do the fun things first and prioritize the rest! My theory is that if I start off with the fun “stuff” I make the remainder more bearable and enjoyable. I try to plan my week on Sunday by writing down what I’ll do each day: go to the grocery store on Monday, wash clothes on Tuesday, go to the doctor on Wednesday, etc. Of course, I know this is ALWAYS subject to change. I agree with myself ahead of time that I will not be angry or disappointed if I have to make changes during the week – I will do my best.

Once I have the week “sort of” planned, I put each day on a sticky note and add the day’s main tasks and the smaller ones. I plan the day’s order, making sure the fun tasks come first. Depending on my health and wellness for that week I can change the days and times just by mixing and matching sticky notes.

Another time management tool I use is to have flexible get together dates with my friends. For example, we have open invitations for dinner on Monday, Thursday or Saturday, whichever works best. Then we text each other until one of those dates work for both of us. When they don’t, we move the dates to the next week and start over. The key is to make the dates flexible for both parties. It works.

Finally, I always say “yes” to a task before I decide how to manage it. This keeps me open to completing more tasks when I feel I’m able to. It’s real easy to automatically think and say no to parties, get-togethers and errands. It’s more thoughtful and useful to think “yes,” consider the actual event and your willingness and ability to complete it, and THEN make the decision. I know it sounds crazy, but for me it gently pushes me to seriously consider what I will do, when I will do it, and how it affects my quality of life. I have been called many things through the years but no one has ever questioned my time management, even though my methods are crazy and funny – they work for me.

Check back on January 26th for David’s next journal entry.