Category Archives: Ehlers-Danlos

Biking, Ehlers-Danlos, TwelveNineRide

Day 5 – Crossing the Finish Line

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This morning we were back on the road around nine o’clock.  The first 15 miles were uneventful, but soon after that Brian started to have knee pain again.  By the time we arrived at our first rendezvous point with the supply car in Baker, West Virginia, it was difficult for him to pedal.  We stopped for lunch at the local general store/gas station/post office/deli/grocery store/sporting goods (aka gun shop).

General Store in Baker WV

Andrew asked if they had Philly Cheesesteak subs.  We thought he was expecting a lot, but sure enough they had “steakcheese” subs on the menu.  Meanwhile Brian took some pain medicine, made a ice bag for his knee, and then wrapped it in an Ace bandage.   After an hour, we were ready to start again.  Fortunately, Brian’s pain had subsided and we were back to making good time again.   By 2:15 p.m. we arrived at the Virginia border.

Welcome to Virginia
Welcome to Virginia

Shortly before 3:30 p.m. we turned south onto Route 42 leading into Harrisonburg, VA.  Finally around 4:20 p.m. we pulled into Eastern Mennonite University where our church is having a conference this week.   In spite of wrong turns, missed connections, muddy roads, sore muscles, and painful knees, after 5 days and over 476 miles we reached our goal.

To close, we quote Karah again:

When adversity strikes we have two choices: we can choose to blame God for it, or we can allow Him to refine us and make us tender toward Him. I have often wished that The Lord would just take me to heaven; I would then be reminded of Paul and all the suffering he went through and remind myself that “to live is Christ and to die is gain”.

Though I am mostly confined to a wheel chair and still have seizures,
(though they are brought under control faster then they used to be) I am happy to be reunited with my family again.

Thank you again for your faithful prayers,

Love in Christ,

Karah

If you would like to partner with us in helping Karah, we ask you to make a donation per mile ridden by us on our way to church camp, or you can contribute any amount you’d like.

Miles Donation per Mile Donation Amount
476 .01 $4.76
476 .05 $23.80
476 .10 $47.60
476 .20 $95.20
476 .25 $119.00
476 .50 $238.00
476 .75 $357.00
476 1.00 $476.00
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If you’d like to join our conference remotely, we are streaming live at 7 p.m. EDT each night this week (July 20 though July 25, 2014) at easterncamplive.org as well as making this content available on-demand at the conclusion of each program.

 

Biking, Ehlers-Danlos, TwelveNineRide

Day 4 – 4 States, No Mi-Fi, No Cell Service

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This morning the weather remained cloudy after a shower passed through last night. We got off to an early start and made good time crossing the Mason Dixon line (that’s the Maryland border to you Yankees up North) by around 10:30 a.m.

Unfortunately, the supply car was late arriving at our pre-arranged meeting point and we continued on. Then our cell phone and internet service became unreliable and we had a difficult time reconnecting. Finally, we rendezvoused at the Western Maryland Railway Station which lies on the Chesapeake & Ohio Canal route in Cumberland, Maryland.

Western Maryland Railway Station
Western Maryland Railway Station

By this time our group was a little crabby, so we found the perfect place to serve us crabcake sandwiches for lunch:

The Crabby Pig
The Crabby Pig

After lunch, because the canal towpath was muddy from the previous night’s rain, we decided to change our route back to the main roads. The smooth surface of the road is easier to ride on than the towpath, but there are generally steeper hills and, of course, motor vehicle traffic to deal with. During the afternoon, we began to see some rain drops. We ocassionally experienced brief periods of light rain all afternoon and into the evening. Eventually, the steepness of the hills, made us glad to return to the towpath. We met up with our supply car at the Paw Paw Tunnel, and then returned to the main roads to cross into West Virginia.

Welcome to West Virginia
Welcome to West Virginia

For our evening ride we were back on main roads and experiencing some of the longest and steepest hills yet. At one point just before a turn we saw a “Welcome to Virginia” sign farther down the road and took a detour to photograph it, so technically we visited four states today (Pennsylvania, Maryland, West Virginia, and Virginia); however, once we made our turn, we were back in West Virginia for the remainder of the day. By 8:00 p.m. we were muddy and sore and called it quits for the day with over 100 miles logged. Only about 80 miles to go!

To conclude, here is another excerpt from Karah’s letter where she talks about how she dealt with her pain:

“Another way The Lord comforted me during my hours of intense pain was through a song I learned from Steve Green and I mentally sing it to myself during my hours of seizures or sleepless nights. Below are the lyrics to that song.”

“Whatever it takes to keep me tender toward you, whatever it takes Lord I
beg you to do. Whatever you must lead me through whatever it takes Lord do.

At times I hear your voice and try to hide; but patiently you draw me to your side. I may not always see your words are life to me. So many times I’ve missed you, help me Lord to not resist you.

Whatever it takes to keep me tender toward you, whatever it takes Lord I beg you to do. Whatever you must lead me through whatever it takes Lord do.

Sometimes my heart gets hard and I can’t see that your correction is
protecting me, But as I look with in the darkness of my sin breaks my heart and leaves me tender, gratefully I then surrender, I surrender.

Whatever it takes to keep me tender toward you, whatever it takes Lord I beg you to do. Whatever you must lead me through. Whatever it takes Lord do.

Whatever you must lead me through, whatever it takes Lord, there’s too much at stake Lord, whatever it takes Lord, do. Whatever it takes Lord.”

If you would like to partner with us in helping Karah, we ask you to make a donation per mile ridden by us on our way to church camp, or you can contribute any amount you’d like.

Miles Donation per Mile Donation Amount
476 .01 $4.76
476 .05 $23.80
476 .10 $47.60
476 .20 $95.20
476 .25 $119.00
476 .50 $238.00
476 .75 $357.00
476 1.00 $476.00
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Biking, Ehlers-Danlos, TwelveNineRide

Day 3 – Breakthroughs and Breakdowns

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The big breakthrough today, besides surmounting several large hills, was passing the halfway point in miles for our trip. If you think it takes a long time to get through Pennsylvania in a car, you would not want try cycling through it. This was our second day biking across Pennsylvania with part of a third day to follow tomorrow. Nevertheless, we had another beautiful day for biking, mostly sunny with highs in the 70s (Fahrenheit). The morning was mostly uneventful, and the last 10 miles before lunch we had a shaded ride through the woods on a gravel path next to a stream.

The path came into the town of Williamsburg where there was a picnic area next to an ice cream shop. We had a picnic lunch and then Oreo flurries for dessert. As we sat eating our lunch, we spied this sign at the opening to the trail we had just ridden, which noted the risky nature of our morning ride:

Dangerous Equine Activities
Dangerous Equine Activities

Fortunately, we did not come across any equine activities, but after yesterday’s encounter, we were wondering if a warning for bear or skunk activities might be more appropriate.

The terrain today was mostly rolling hills. Going up the hills can be slow at times, but coming down the other side presents many beautiful views accompanied by the exhilarating feeling of accelerated progress thrown in for good measure.

We ate supper in Bedford, PA, and set out to get as many additional miles in as possible today. Unfortunately, Andrew’s bike pedal broke and we had to cut our ride short at 93 miles today. We are thankful that Brian was able to fix the bike pedal before we turned in for the night, so we won’t have to spend time searching for a bike shop tomorrow morning. Thank you for your prayers and continuing support for us as well as for Karah!

To close today, here is an excerpt from one of Karah’s letters:

I would like to take this time to express my gratitude for all of your faithful prayers on my behalf during the past year and a half. I am so thankful that God has used this time of testing to bring hundreds of His people to their knees before Him. The Lord promises that He will always answer our prayers and the Holy Spirit is constantly interceding on our behalf. His answers may not seem to be what we think is best however, He is Sovereign and He sees the big picture while we can only see the here and now.

I do not understand why the Lord has seen fit to allow so much suffering; but I thank Him for it because He has used it to draw me closer to Him. God often uses extreme pain and misery to draw us closer to Him, and that has
certainly been the case in my suffering. The agony of my seizures was intense and often I wished I could go into a coma and not feel the anguish; but The Lord used the alertness of my mind to comfort and encourage me. I cannot control my outward body; but The Lord ministers to my spirit. Oftentimes when I am gasping for breath, I am reminded that when, Jesus, the perfect One, was gasping for breath on the cross, His Father turned His back on Him; but as I lay hour after hour gasping for breath my Heavenly Father holds me in His loving arms giving me the grace to bear the agony second by second. His grace is always sufficient.

If you would like to partner with us in helping Karah, we ask you to make a donation per mile ridden by us on our way to church camp, or you can contribute any amount you’d like.

Miles Donation per Mile Donation Amount
476 .01 $4.76
476 .05 $23.80
476 .10 $47.60
476 .20 $95.20
476 .25 $119.00
476 .50 $238.00
476 .75 $357.00
476 1.00 $476.00
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Biking, Ehlers-Danlos, TwelveNineRide

Day 2 – New State, New Challenges

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Day two began with sore muscles for both of us, and knee pain with each pedal stroke for Brian.  Thankfully, this subsided as the day progressed.  The morning route included a scenic ride on a gravel road alongside a winding river.

It was beautiful, but after about 25 miles we returned to the main road because, although the trail was level, we felt it was hindering our speed too much. Immediately after leaving the trail, we were met with one of our biggest challenges for the day – a steep, 1 1/2 mile climb. In the process of reaching the summit, we rewarded ourselves with huge ice cream cones at an old fashioned country store, and then were blessed with an exhilarating descent on the way down.

Two Scoops from the Country Store
Two Scoops (aka Medium) from the Country Store

Near top of the hill in PA
Near top of the hill in PA

The afternoon brought some unexpected sightings in rural Pennsylvania. Riding through a wooded area, Brian saw what he thought was a large dog loping across the road, but no, dogs don’t have such thick legs! It was then that he realized he was seeing a black bear. Unfortunately (Editor’s note: or fortunately in his parent’s opinion), it scurried into the woods before we were able to get a picture. Other animals we encountered included racoons, a heron, and a skunk family that dashed in front of Andrew as he was racing down a large incline. Another sighting: a road sign pointing to the Jersey Shore. Huh? Who knew that Pennsylvania had a Jersey Shore? In summary: good weather, God’s protection, and good progress today with over 111 miles logged.

Biking, Ehlers-Danlos, TwelveNineRide

Day 1 – A Bumpy Ride

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We got off to a late start this morning around 10 a.m.  Part of the bike trail was the towpath for the old Erie Canal.

Erie Canal
Erie Canal

The first 30 miles went by uneventfully; however, after that the roads were not as well marked and we missed a couple of turns.  We recovered quickly from most of these, but had one detour that cost us a total of 10 miles.  The next test for the day was what our mapping software labeled “seasonal roads”.  These roads consisted of gravel, dirt, and rocks for which mountain bikes would have been a better mode of transportation.  At one point we had a 10 mile stretch on a seasonal road which couldn’t end soon enough for us. Our sister, Renee, accompanied us in our car and met us in Amish country with a late afternoon lunch.

Lunch in Amish Country
Lunch in Amish Country

We had a beautiful ride through the Finger Lakes region which ended with a long downhill stretch.  At the bottom of the hill was the town of Watkins Glen which is located on Seneca Lake where we stopped for supper.

Seneca Lake
Seneca Lake

After supper, we had to climb back up the counterpart to the hill we had just come down.  After almost 11 hours of biking we turned in for the day.  We biked a total of 106 miles today; unfortunately, because of our 10 mile detour only 96 of those miles took us closer to our destination.   There were some frustrating moments during the day, but all in all, we made good progress towards our goal.

At the end of the day we’re tired but we’re glad that we can do something to help Karah. While Karah was eventually able to gain some measure of relief from her Ehlers-Danlos symptoms and return back to her family in Brazil, she still has on-going medical treatment needs which require financial support.  Currently she relies on a feeding tube for nutrition, and has several medications she must take daily.  Two of the medications are costly and not available in Brazil; consequently, they must be shipped from the U.S.

Karah with Dr Henderson
Karah with Dr Henderson

If you would like to partner with us in helping Karah, we ask you to make a donation per mile ridden by us on our way to church camp, or you can contribute any amount you’d like.

Miles Donation per Mile Donation Amount
476 .01 $4.76
476 .05 $23.80
476 .10 $47.60
476 .20 $95.20
476 .25 $119.00
476 .50 $238.00
476 .75 $357.00
476 1.00 $476.00
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Biking, Ehlers-Danlos, TwelveNineRide

Training for the Hills

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Today marks one week until the beginning of our ride.  There has been a lot of necessary prep work for the trip.  Equipment had to be purchased (i.e. bikes, helmets, tires, cycling shoes and shorts), the route mapped out, meal planning, hotel reservations, and of course, updates for the website.  We thank the Lord that things have been coming together.

Training
Training

Even though we have a map of our overall route, we are still working out the exact distance to be traveled each day.  Our most challenging days (on paper) appear to be days three through five, where we will take on the Appalachian mountains and the hills of Virginia. Thankfully, our house in Syracuse is located at the top of a hill, so anywhere we go, we get practice riding hills.

Night Ride
Night Ride

Since we’re only a week away from the start, we’re beginning to taper (reducing the amount of miles ridden) in order to be adequately rested for the actual trip.  This last weekend we completed a 60 mile ride, but now we are focusing more on cross training by lifting weights and running.  It’s hard to believe a week from today we’ll be out on the road for real and starting on our journey.

 

Biking, Ehlers-Danlos, TwelveNineRide

Before The Journey Begins

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We don’t begin our trip for almost two weeks yet, but to be able to bike 476 miles in five days, we’ve been putting in a good deal of time training.  My brother Brian and I (Andrew Koch) began training about 6 weeks ago when we determined we would ride our bikes from our home in Syracuse, NY to church camp in Harrisonburg, VA.  While we are always up for new physical challenges, we wanted to do more than just challenge ourselves physically.  We decided that we would dedicate our ride to a particular cause and ask friends and neighbors to sponsor us by the mile in order to raise money for this cause.   As we thought and prayed about what our cause should be, one in particular came to mind.

For several months our church has been praying for a young woman, Karah, who is the daughter of missionaries in Brazil.  One day she began having eye pain, which gradually became worse and worse, until she had difficulty functioning.  She came to the U.S. seeking a diagnosis.  It took many months to diagnose her illness.  Eventually, she was diagnosed with Ehlers-Danlos Syndrome (EDS). Unfortunately, there is no known cure for EDS. Standard “treatments” involve combinations of pain management techniques, therapy, home modifications, mobility aids, and support group attendance. While Karah was eventually able to gain some measure of relief from her symptoms and return back to her family in Brazil, she has on-going medical treatment needs which require financial support.

If you would like to partner with us in helping Karah, we ask you to make a donation per mile ridden by us on our way to church camp, or you can contribute any amount you’d like.

Miles Donation per Mile Donation Amount
476 .01 $4.76
476 .05 $23.80
476 .10 $47.60
476 .20 $95.20
476 .25 $119.00
476 .50 $238.00
476 .75 $357.00
476 1.00 $476.00
Donate Button