Friday, December 28, 2007

Aleve or a leave?

I will never forget the confusion that was caused a few years ago when Dr. Swank told my wife to take a leave. We were not sure if he meant Aleve or a leave from work. We knew that he recommended my wife not working at all if possible, and if she was having problems he would ask if she could take a few days off to rest and recoup. Today is one of those days when she probably needs Aleve and to take a leave from life to rest.

We just returned from a weekend in Cloudcroft NM for the holidays. It was beautiful and we played hard the whole weekend. They had received a foot of snow a few days before we arrived, so there was enough snow to sled on but not enough to cause any driving issues. We hoped they would have the small ski area open in Cloudcroft, but there wasn't enough snow for them to operate it. So, we opted for sledding and snowball fights and just plain fun.

We never know how my wife's MS will affect a trip like this, so we usually try to over prepare so that we have all the necessary things we might need. This trip was nothing out of the ordinary. Most Multiple Sclerosis sufferers have an aversion to heat and have to stay away from hot baths and the hot days of summer. My wife is affected by it, but not to the extent we read about others that are highly sensitive to heat. One thing she is affected by is cold. If we plan well, she doesn't have too much of a problem, but if she ever gets chilled it is extremely hard for her to get warm. On this particular trip, we knew we were staying in a Bed and Breakfast that was a little drafty, so we brought our own space heater and extra blankets.

The cold ended up not being an issue because of our planning, and we had a blast. She even flew down the hill a few times on the sled and was laughing and having fun the whole time. She amazes me by what she can do, especially when I know that she has to always worry about the MS. Years ago she lost her eyesight right after mountain climbing, so we both are concerned when she has a lot of stress on her physical and mental state. She was scared this trip because of the height and speed of the drop we were going down, but she still jumped on the sled and flew down the hill.

Something we have noticed through the years is that she can handle physical activity in the cold. She and I both love to snow ski, and as long as she "listens" to her body, we can ski for days without her having any issues. She has to be careful that she doesn't tire out her legs, but the lift ride usually helps to keep her fresh and ready to go again. This weekend was no different, we all were going non-stop from the time we arrived in Cloudcroft, and she did great. She made sure and rested when possible, and she went to bed early so that she could get a full nights sleep. We knew that so much activity would begin to catch up with her, so she is going to spend the next few days resting and sleeping as much as possible to recover.

MS can be a real burden and downer sometimes, but this past weekend was proof that good planning can lead to a great time. One day we hope that she will not have to be so careful, but for now we will take those moments when she is feeling great and flying down a hill. Those are the memories we want to create for our daughter and for us - memories of us laughing, playing and enjoying life to it's limits.

Monday, December 10, 2007

MS may stand for Mood Swings

Multiple Sclerosis attacks every area of your life. It affects your daily life, your work life, your family life and your spiritual life. It doesn't seem to have any boundaries and no remorse for what it does or how it does it. As a husband, I am always watching to see how my wife is doing. Her MS is sometimes very sneaky in how it works itself out in her life. For instance, she will start to develop knots in your shoulder muscles that are aggravating but not anything too bad. Over a few days those knots can develop into major pain and severe headaches. With all of the physical issues of MS, no wonder my wife has mood swings.

When my wife is having MS problems, it can manifest itself in a lot of ways. One way that it usually comes out is her need to cry. She will cry at puppy commercials and pretty flowers and anything else that remotely touches her heart. I know it frustrates her to no end because once she starts crying, she has an extremely hard time stopping. I guess I have gotten used to it now, but it seems so make other people nervous when she starts crying for no apparent reason. We have sat in teachers meetings for our daughter and my wife just can't help but cry due to the subject of our daughter. It embarrasses her and frustrates her, and I feel helpless watching her body expressing everything built up inside of her.

Along with the crying can come other emotions, like anger or joy or excitement. As a young girl, my wife hated surprises. She would have to know what she was getting for Christmas or her birthday, and she really hated to be startled. I have heard that a Multiple Sclerosis patient feels everything a normal person would feel at 10X the intensity. I know for my wife that more often than not, this rule applies. Early on in our marriage I would playfully chase her around the house. One day very early on, I caught her on an emotional day and she was in a great mood until I chased her. All of the sudden she fell to the ground in a ball just crying and asking me to stop. I had no idea what was going on, but I quickly found out that she didn't like to be chased or startled or surprised. It physically hurt her.

I don't know that I understand the physical hurt, but she feels things so differently than I do. The intensity, and the extent of the feelings she has are so much more powerful than what I feel. Sometimes her moods swing so much that I am not sure what to do, but I have learned that many times she doesn't even realize that it is happening. To be honest, I really love the fact that she cries when something touches her heart, or she feels so strongly about something. Back when we would go see Dr. Swank, he described MS patients as one of the most alive patients he had ever treated. He would say that they were vibrant and full of life and beautiful. I can attest to that. My wife is vibrant, beautiful and full of life like no other woman I have met. MS may stand for mood swings sometimes, but I am OK with that. It also stands for my sweetheart.

Friday, December 7, 2007

Sleepless Nights of Multiple Sclerosis

I think that sometimes what goes "bump in the night" is Multiple Sclerosis. My wife has had bouts of insomnia off and on over the course of this disease. When we first were married, she would take sleeping pills during those sleepless nights or maybe take an extremely small amount of valium to settle her down. After Dr. Swank retired, she was committed to getting off of any sleeping pills or valium because we knew that few doctors would take the same approach as he did. So, she struggled with calming herself during stressful situations, and settling in at night to fight for sleep. Those were some very hard times in our lives because it was so much easier to just take a pill and everything melt away. I will never forget some of those nights when she would have nightmares where she would act out in her sleep. One night she thought she had fire ants all over her body and was slapping them to kill them. She woke herself up when she slapped herself in the face, and of course she looked at me shocked and trying to figure out what just happened. She vividly remembered the fire ants and she was still looking on her skin to see if there were bites or more ants. Those were some crazy nights, but insomnia is definately a symptom of MS. Her bouts of insomnia seem to be further apart than they used to be, but when they do hit, it makes our lives very interesting for those days or weeks. It's a chain reaction because she doesn't sleep well, which makes her more fatigued, which causes more insomnia, which causes her body to start having problems which almost always leads to some kind of exacerbation. When she has problems now, we will try Bowen, stress vitamins, chiropractic, or whatever else is working at the time. If we let it go too long, she will have to literally sleep for days to catch back up, which I know just frustrates her more. Last night is a great example of what happens at this point in her disease. We have recently been blessed with miniature dachsund puppies and they cry and make noise almost all night. The laundry room we keep them in is right next to our bedroom, so we can hear every little sound. My wife hasn't slept well since they were born a couple of nights ago, and I can see it catching up with her. The dark circles around her eyes are getting worse, and her patience is going, and the only thing that will help is sleep. So, she will try to sleep during the day which will lead her to having more issues sleeping at night and the cycle will just repeat itself until she sleeps for an extended period of time. It is not out of the norm for her to sleep a 24 hr period to catch up after the cycle starts. So, I will keep my eye on her the next few days and will probably have to make her rest so she can catch up. We already have a full weekend planned and if we don't watch it, she will be exhausted and her body will begin to shut down. If you or a loved one has Multiple Sclerosis, take the time to rest. Dr. Swank always recommended a minimum of 1 hour a day of rest where you laid down without distractions and closed your eyes and just let your body heal. Oh, if you want to see the adorable puppies, stop by my myspace account and check out the pics -

Thursday, December 6, 2007

Bowen Therapy and Multiple Sclerosis

It has been almost two years since I received the initial training in Bowen Therapy. After an intense weekend of classes, I finished the first session and was excited to try this new technique on other symptoms my wife was dealing with. Her symptoms have been very frustrating through the years. She had most of the same symptoms until we decided to move to Midland Tx. After we lived there for a few months she started to develop symptoms that we had never dealt with before. We had both read about them, but had never had to experience them. One of the symptoms that popped up a few times was bladder control or bladder dysfunction. This has to be one of the most demeaning symptoms she has had. While we were in Austin for the Bowen training, she was trying to find the hotel and had an accident right as she drove up to the hotel she thought we were staying at. It turned out to be the wrong hotel so she had to clean herself and the car up and try to have some dignity while she and my daughter headed to the right hotel. This was the first time she had lost total control. There had been moments before that we would have to pull over quickly or find a restroom, but never like this. I will never forget the intensity of frustration and shame she felt that evening when I was through with my first session. It killed me to see her so hurt, and it was even worse that this had all happened in front of our daughter. My wife has always tried to act like everything is normal for our daughter even though we have went through some really crazy times. She has always wanted our daughter to feel like her mom is normal and when something like the bladder control issue hits, it hurts her deeply. Our daughter handles it all so well, and we are both so proud of the way she deals with the issues of MS. So that night we decided to try out the new technique I had learned. I had no idea if Bowen would help with her bladder issues or not, but I knew that it had made her feel better before. After the session she did feel better, but the real difference was in her body the rest of the time we were in Austin. She didn't have anymore bladder problems the rest of the visit, and she had energy and felt great. We have since used Bowen anytime that she is having an attack or when we know that her body is screaming out for help. Sometimes it helps more than others, but we have both seen a good Bowen session stop an exacerbation in its tracks. I have not been able to go back for the next classes, but one day I hope to learn the rest of the specialized techniques. If you have any questions about Bowen please contact me. We both know that every person is affected by different therapies in different ways, but we truly believe that any Multiple Sclerosis patient could benefit from a Bowen session.

Monday, December 3, 2007

MS is giving me a headache

Headaches are a common symptom for my wife. Over the years, she has gone through stages where headaches have ruled our world. Today was one of those days. She woke up stressed about an interview for a new business she is starting, and the stress got the better of her. I literally think Multiple Sclerosis waits in the wings for stress so that it can rear its ugly head and ruin your day. Her headaches can become so severe that her stomach gets upset and she can barely open her eyes. We have tried all sorts of things to remedy this issue, but we never know what will work from one headache to the next. Today, she tried a chiropractic adjustment and that helped to take the edge off, but she was still having issues until she ate and rested tonight. A few years ago she had a headache for almost a month. It would change in severity from day to day, but we tried all sorts of treatments and couldn't seem to kick it. I am a research fanatic and had been reading everything I could find about alternative therapies that might help. I finally found a post on a technique called Bowen Therapy. I called and found a specialist a few hours from us and set an appointment for that day. We arrived and were told that the therapy would be like nothing we had ever done. Her head was throbbing that day, so we could only hope and pray that this would help. I was able to sit in as the therapy was performed, and after 30 minutes of being treated, she was headache free. It was crazy how the things involved in this treatment helped that much! Not only was the headache gone, she had more energy and felt great for about a week after the session. I was so impressed by the therapy that I had to learn how to do this myself. I found a trainer in Austin that teaches and signed up as soon as I could. It was a great experience and now I am able to help her with a lot of different problems using the techniques I learned. I will try to spend my next post on Bowen and how it has helped our family.

Wednesday, November 28, 2007

Normal MS, if there is such a thing.

The last few weeks have been pretty calm. My wife has been dealing with the usual fatigue and small issues, but nothing too major. It is pretty sad that fatigue and small issues are the norm, but we aren't giving up on those being gone someday too. I have been studying up on a new doctor and his treatments, and hopefully we will be able to go see him next year. He doesn't take insurance, and everything is cash up front so we are going to have to prepare for the expense. So far I have found exceptional results from his treatments, and personally know a few doctors that have been treated by him. I am also looking into a few other treatments that have shown promise, and I know that 2008 is going to be another year of milestones and learning. Right now, we are just trying to make it through the holidays in one piece and with our health intact. This time of year is always a struggle, with all of the hoopla and energy you have to expend. So, we will go into holiday mode and my wife will start resting more and making sure she is not overdoing it. Just as an example, she rarely shops this time of year. The crowds and the hassle and the long lines just cause more issues than any of the shopping specials are worth. We shop ahead of time or go to the stores for specific things so that she is not exhausted from it. We also try to pay attention to our eating habits a little more. After my wife was first diagnosed, she started on the Swank MS Diet. We would travel to Oregon once a year to spend a day at Dr. Roy L Swank's office and my wife followed the diet as best she could. Everything Dr. Swank said would happen, happened. She did great as long as she was on it, but we moved to a Children's home as house parents in 1999 and she just wasn't able to focus on her meals. Dr. Swank had always told her that once you get off the diet you probably wouldn't see the effects for about 2 years. He was exactly right. After two years of being off of the diet, she started having more issues, and she has struggled to get back on it since. We know that food choices affect MS. It is so obvious that our eating habits play a huge role in our everyday life, with or without MS. We make excuses and eat unhealthy and we reap exactly what we have sown. We have been working on our families eating habits, but we have a long way to go. If you're interested in Swank's diet, there are a multitude of sites online that explain the diet and give helpful advice about recipes and eating out. Dr. Swank is no longer in practice, but I know that we owe a lot to him and to his staff for the great job they did in truly taking an interest in the needs of MS patients. So, if you have MS or have a family member with MS, please take the extra time over the holidays to rest and recover. A short nap everyday or a little extra rest can go so far in helping with the holiday stress.

Monday, October 29, 2007

Blurry Eyes

The morning after the vertigo hit, my wife woke up with a blurry eye. That is not what we wanted to hear, and we didn't know if it would go away with rest or if we were off to do another round of steroids. She has been blind in one eye fours times over the course of the disease, and that is one of the few times we use meds to help with any of the problems. She usually does a round of Solu-Medrol and her eyesight clears up. Her eyes usually start getting blurry, lose color, and then she explains it as her eyes going dim until it just goes dark. It must be really scary to go blind and not know if it will come back or not. I know that one of her eyes is still dim from one of these episodes. So, when she woke up with her eye not quite right, we both felt like we would be heading to the doctor. What we didn't know is how much the chiropractic visit would help. She had already had an appointment set that morning from the day before, and she was still a little dizzy, so we went in to see how much adjustment was needed. Her spine was way out again, so she was adjusted and within minutes of the adjustment her eye cleared right up. We had never thought about using chiropractic for her eyes before, but we have seen weirder things over the years. After her adjustment the dizziness was gone and she felt much better most of the day. I know how much it scares my wife to have problems with her eyes, and I could see the relief on her face after she knew that her eyes were OK.

Tuesday, October 9, 2007

Another one of those days

Today has been another MS day. My wife woke up sick this morning and has been having vertigo symptoms on and off all day long. She has had vertigo before, and it usually seems to hit on the wrong day at the wrong time. She has been trying to sleep it off all day, and will probably sleep straight for 20 + hours. I know that this frustrates her more than anything. She had so many things planned for today, and on top of being sick, she now feels behind even further than she already was. We both feel like this is just a stomach bug going around, but her Multiple Sclerosis seems to make these things bigger than they should be. Today will pass, and by tomorrow morning she may feel great again. The vertigo became worse as the day went on, so we decided to try a special chiropractor we have been going to for about 5 years. The drive to the office was not enjoyable, and the walk inside wasn't much better. The people in the chiropractors office stared hard since my wife could hardly stand, much less walk. Within minutes of being adjusted I could tell from her eyes and color of her skin that the vertigo was letting up. We didn't know if it would work, but the chiro treatment was able to knock out the majority of the dizziness and within about half an hour, she was feeling a 100 times better. She slept the rest of the day and was feeling considerably better. These times are always hard, and you never know if these attacks will last a few hours, a few days or a month or more, so we were relieved when she started getting better the same day. And as I have learned in our marriage, this was just another one of those days.

Friday, October 5, 2007

My intro to MS

It was 1995, and I had been dating my future wife for a while. Our relationship to this point had been active and fun, and I would have never suspected that she had a life altering disease. Everything seemed normal. We would walk together, roller blade together and spend countless hours together without there ever being a sign of the monster known as MS, or so I thought. Yeah, she couldn't keep her balance very well, and she rested a lot. She also had a weird diet, but I never thought too much about it. She was vibrant and full of life, and I knew that I was falling in love with her. It was quite a few weeks into our relationship when she decided it was time to tell me. We had been out on a date and I was dropping her off at her apartment when she became very serious. She began to explain to me that what she was going to tell me was going to very hard for her and that many of her past relationships broke up over it. Of course I had no idea what she was about to tell me. She went on to explain that she had a disease called Multiple Sclerosis and that it affected her in a lot of different ways. She told me that she had been blind a couple of times and that parts of her body had been numb before, along with many other symptoms. She also had been home bound for about 9 months when the disease really kicked in. Apparently I had met her right after she had gotten back on her feet from this last big attack. I honestly had no idea what MS was or what it could do, and I knew that I loved her so I said what any love struck guy would say, "No problem". I'm a research fanatic, so I asked her if she had any books or websites or anything on the disease, and she seemed a little surprised. You see, she had never had a guy want to know more about the disease and have a desire to try to help. That night has changed my life and I continue to learn to this day what this horrible disease can do. We don't have all of the answers, but I think we have started to put the pieces of the puzzle together. I will be sharing what we have learned from doctors, experiences and our own research through this blog. So, eleven plus years into our marriage, we are happily married, have one daughter and two rambunctious dachsunds. Every day is still a struggle and battle, but I would have it no other way. I have read and heard about spouses that bailed out of their marriages due to MS, and I could never imagine doing that. I married my wife, not in spite of the disease, but because I loved the woman she was and is. So, this blog is a raw look at our daily lives as we struggle to be spouses, parents and productive individuals in our careers. I hope this blog will give you some hope, whether you have just been diagnosed with MS or have had the disease for many years. Enjoy!