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.