MS Update - Another year and still marching

My family and dad around mile 10
overlooking the high trestle bridge

Just doing a quick update of the status of the MS adventures.  For those friends and family on Facebook I'm sure you saw that my whole family and my dad did the MS bike ride with me in June.  Joshua was riding a 20" bike to the ride was pretty casual compared to what I am used to. It was perfect weather and we even ran into the Dream Team, which is my fundraising team, at the turn around.  I'm just wrapping up the fundraising from that so it isn't too late if you had planned to make a donation the MS Society.  Just use this link  http://bndfr.com/6M5h9  
Thank you to the following 2017 donors: My folks, George, Bill, Theresia, Sheila, Ingrid, Shirley, Kathleen, Judy, Joe, Aaron, Blair, Julia, Henrieta, Mary, Mitch, Rhonda, Cindy, David, Amy, Barb, Bryan and Bonnie.  Hopefully I didn't miss anyone.  Many of you are repeat donors so be watching your mail boxes for a thank you! Yes I do believe in the power of snail mail.  :)

My family with the rest of the Dream Team
at the turn around point in Woodward

So for the update... I had my yearly check up with my neurologist today.  He is pleased I'm adjusting well to my new medication. For those of you just getting up to speed on this, the injection meds I was taking the first three years nearly took me out last summer.  I spent two months off MS meds and then started a twice a day pill in October.  Let's just say that I had a rough start with the standard ramp up on that, but after a couple of dosage adjustments we got things on track.  The hardest thing about this new med is that I take it twice a day after meals which means after breakfast and after dinner.  I can't take it on an empty stomach, and while I rarely miss a meal, it wasn't easy to find the right combination of vitamins and food to keep the GI and tingling side effects at bay.  I think I have it pretty well figured out now so the hardest part is remembering to take both pills.  I do good with the morning one but occasionally miss an evening one especially on the weekends.

My neurologist also felt like since none of the damage I already have from MS is getting worse that unless I have a major flare or new symptoms between now and next year's appointment that I'm in good shape.  He appreciates that I have regular fitness in my routine and continues to encourage me in that area.  That doesn't mean I'm not effected by MS every day but that I have it pretty good in the grand scheme of managing a chronic illness like MS.

My family and dad around mile 14
on the High Trestle Bridge

The other thing to note related to my MS is that I have finished my clinical trial at the University of Iowa.  I was assigned to the swank diet over the Wahls diet.  This meant that for 24 weeks I had to eat foods only in low saturated fat as well as a healthy dose of grains.  I really missed chocolate and pizza with real cheese.  I'm not sure I can say I missed much else, but it is nice to be able to each what I want again.  the hardest part for me with the diet besides writing down everything I ate for 26 weeks (had to do this twice in the first 12 weeks where I ate normal also) of the was all the grains.  I'd been eating mostly gluten free for two and half years going into the study so that was tough.  I also ended up gaining eight pounds...  I blame the carbs, and still doing rehab from my summer injuries, compounded by moving to a new house and readying a house for sale.  Working hard to get back on track now and will do a deep dive in food management process in August.  I think I will end up doing some sort of combination between low saturated fat with fruits, vegetables and lean meats. 


Either way, I'm managing for now and grateful for every day that I can think straight, make it to the bathroom on time, and be active in my day.  So long as I take care of my body and my meds continue to work, I should be able to maintain my mobility long into the future.  Thank you for everyone in my life who remind me to slow down and make time for myself now and then.  Until next time I'm sending love out into the world so have a great one!

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.

Updates - Settling a new home (Written in April '17)

As I was talking to a professional colleague while traveling this week she pointed out I hadn't posted anything to the blog in a while.  It's been a whirlwind six months for my family and I.  We spent the summer last year chasing the idea that it might be nice to live outside of town with a little space.  We ventured through at least a dozen homes, mostly old farm houses outside of the Ames city limits.  When we had started to lose hope of finding anything and were shifting our thoughts towards the slow progression of getting updates done to our house in Ames, several more listings popped up, and we found "the one" and made a fast offer.  October through December was busy with lining up flooring installations, countertops and other needed repairs and updates all mixed in with the chaos of the holidays.

Come mid-January, immediately after my being in DC for work travel for a week, we moved with the help of a small army, into a farm house over 100 years old.  It wasn't any old farm house, as it had been thoroughly renovated in the mid-90s to add several additions including a three car attached garage.  The property is great, three acres even, four miles south of ISU campus, with the house and a big pole barn and the loveliest sunrises and sunsets you've seen across the Iowa farm fields. 

The beginning of the year found us adjusting to our new normal.  Careful scheduling of activities so we weren't running back and fourth to town all the time.  Learning the timing of running the kids to school in the mornings, figuring out after school schedules so everyone was rounded up at the same time or by a second parent or extended community of ours to get everyone back home again.  We also got the kids officially open enrolled in the Ames school district to keep some continuity in the kids routines.

Three months in, we are finally getting a handle on things, but with both Joe and I traveling for work in March and April scheduling remains a complicated dance.  The last part of this puzzle is figuring out the right moves to get our Ames home off the payroll.  Yes it is still listed, no we haven't had an offer despite a dozen other homes in the neighborhood going sale pending.  Ames is a pretty aggressive, constantly changing housing market but our "Ames house" still sits there empty.  I continue to go over to make improvements like paint touch up, cleaning up flower beds and putting down mulch before racing to the airport for a work trip.

Because of our haste to secure the farmhouse in a very aggressive acreage market we used a VA loan since we wouldn't have a down payment until we sold our other house which wasn't even on the market until right before New Years.  I believe we will sell soon, but all of this hasn't been without stress so as I wrap up this post I ask you to send positive thoughts out into the universe to bring our house a new family to make it home SOON!  We miss our old neighbors, but we don't miss the old house.  Needless to say the whole endeavor has been exhausting but I'm pretty sure we wouldn't change a thing.  Thank you to our family and friends who helped us make it happen. Stay tuned for adventures in chickens, and until next time thanks for reading.