Updates - MS Adventures (Written April '17)

Well I think the last time I wrote about my MS adventures I had just survived the adjustments to my new MS meds.  I think I have things pretty much figured out.  The side effects from my new meds while more pronounced are far less dreary then my old meds and just pop up for a few minutes when the meds "kick in".  I go in for labs in the next week or two to make sure my meds aren't messing with by blood work so hopefully everything will be good and I can continue to take this one for a while.  I know there has been a lot in the news about a new MS med that just came on the market and should this one (called Tecfidera) not work out I will definitely be looking closely at the new one.  One thing is for sure, I do not miss the injections I used to have to do.

As you may have noticed with the last post things have been pretty busy for our household.  I can't say this hasn't effected my MS.  I've had some fatigue and taken a day or two of forced rest but so far am hanging in there.

In other MS related activities, I am still doing the MS clinical research trial.  If you'll recall I volunteered for a research study looking at people like me with MS and how two popular MS diets effect fatigue.  I started my study diet right before Christmas, but ended up being assigned one, while quite different from how I had been eating going into the diet, that ended up being easier for my family and I to manage without a lot of change for them.  I've also had the joy of spending time with my brother and sister in-law (and being able to closely watch her pregnancy progress) during my medical visits to Iowa City.

During my visits they review my food logs as I have to track everything I eat for the last 25 weeks of the study and for three of those weeks I also have to weigh everything I eat and record it in great detail.  They also run a battery of fine and major motor skill tests, vision tests, a lot of blood and stool collections.  As a person with a science background I wish I could learn more about the data I create but since it is a three year study they can't even share blood work results.  I am still glad to be participating especially if it will change the way the medical profession treats MS since I've always felt treatment should be more holistic and less pharmaceutically based.

The diet has been a bit of a challenge while traveling for work and family business the last few months but all in all I feel I've been true to study requirements and on my latest trip I found servers were willing to accommodate my odd requests like no cheese on my tacos and regular toast versus French toast (which would have put me over my egg allotment).  As for whether or not I think the diet is helping me, well I'm not sure what the science shows, but I can't say it has made me feel much better day to day.  I'm certain my stress has skewed the data a bit.  I do think there are some things I will pay closer attention to going forward once I complete the study, so I suspect there has been some benefit for me despite them not being as obvious as going gluten free was for me.

I am grateful for all the accommodations my family has made to allow me to participate with minimal issues.  All in all, I'm pretty blessed that most days I can roll out of bed and go about my day without much slowing me down.  I am grateful for my MS community and family community who help keep me humble and grounded but also give me hope.  So with that I'll wrap up this post by giving you all a heads up... I am signed up to ride again this year with the MS Dream Team for the MS Society.  I'll post a link below if you are interested in supporting the work the MS Society does for patients and families affected by MS.  Until next time, thanks for reading.

Oh... one more thing.  The MS Dream Team rides again this June.  Consider donating to the MS Society and sponsoring me and my team.
Thanks.