2013

Another year has passed and again I find it hard to pick up the laptop and tap out another blog about our battle with MS. It has been a challenging year for us with some highs and lows and we struggle to keep a positive attitude and move forward.

Sara reached a milestone in her fight with this disease in that her neurologist recommended that she stop taking Avonex injections. The current drugs available to help slow down the progression and symptoms of MS are unfortunately geared around the earlier stages of the disease. These drugs have not shown to help much after a woman gets past menopause and the disease is in a more mature stage. So with that, an MRI was done to provide a new baseline and she stopped the drug. Another MRI will be done in a year or so to see if any changes in lesions can be observed, but the doc does not believe things will change much at this point. In fact, he stated that he has seen some people get dragged down somewhat as they continue to do the drug and sometimes stopping it helps.

Sara has not seen a major change in her day to day since stopping Avonex, but has noticed that her involuntary movement of her legs has settled down considerably. So for now we feel that this was a good choice although there is an emotional side to not taking the drug. There is something that makes you feel like you are doing at least something to fight the disease when you take a medication, and this does has a positive mental effect. But she is handling it well and now is focused on her main way to control her MS and that it thru staying active, strong, and continuing to “move”. As the slogan goes; MS Stops People from Moving”, so she fights each day to not let that happen.

As you can read in my 2013 MS-150 ride summary; we had a great time at the ride this year and felt redemption for our difficult ride in 2012. We approached the ride with a different plan which kept us within the limits that MS now puts on Sara. We crossed each finish line and had an enjoyable weekend on our bike. This was certainly enhanced by the outstanding weather, the best since we started riding 9 years ago. Our fundraising went well and Sara again achieved “Big Cheese” status with a low number to show her results in raising money for the cause. After all, the ride is awesome with well over a thousand riders, but it is the money raised that makes a difference in the MS fight. If I have one critique it is that most of the riders do the ride to ride and raise the minimum required amount of $300. What we really need is riders that do the ride to fund raise as that is what will get us closer to a cure which is the ultimate goal.

What we have learned is that as much as we would like things to not change from year to year, for us they do. So instead of fighting it, we need to constantly change our tactics so we can keep moving forward and enjoying life to the fullest. So with that we keep pushing on.

We did have a major setback this year however. In October, Sara had one week where she fell a number of times. Although falls are a part of her challenge with MS, this one week was unusual as she fell many times and that is very scary especially for me. I can’t be with her every minute of every day so I always worry about her falling and me not being there to help. As it was during that week she fell again, this time in our bedroom as she was getting ready for bed. A simple 180 degree turn around resulted in a loss of balance and down she went. This time however she did not get up. Something hurt and hurt bad. She knew she had done something major. A late night trip to the ER confirmed her suspicion as she fractured the upper part of her right femur. This resulted in being admitted into the hospital and having to undergo surgery to repair and secure the fracture. The surgery went well but she was told that it would be 3 to 4 months before she could weight bear on that leg or return to work. This was emotionally devastating for her as she loves her job and it is a big driving force for her to continue her passion in caring for kids.

This proved to be a very lonely, boring, and frustratingly long 4 months. She needed to use a wheel chair for most of it, ramps needed to be constructed to get in and out of the house and she could not drive for a large part of the time as well. There is nothing like being a prisoner in your own home to keep the depression level higher than normal. Also the hubby gets the full brunt of all the pent up frustration. I did improve my cooking skills however and so I am ready now to get on an episode of Chopped.

As I have said in the past, our challenge with MS is a long winding and hilly road. But we lean on each other to make our way. We have no choice. The hardest part for me is to see the person I love struggle. I lay in bed often at night thinking what our life would be like if Sara had not been diagnosed with MS. But feeling sorry for myself does not change a thing. As they say; it is what it is.

Onward,
Mike