After waiting 5 months from the time my neurologist started the process I finally got my first dose of my new MS medicine, Gilenya.  During the 5 months I have had a lot of miscommunications (the phone calls from Gilenya NEVER came up on my phone as anything but usually ignored mass calls), voice mail messages in a thick foreign accent at the lowest possible level of loudness, misdirected doctor appointments, general frustration, and my neurologist thinking that all the delays were my fault.  I had to get EKGs, my eyes examined by an ophthalmologist, and several blood tests. The first dose of Gilenya HAS to be done at a cardiologist’s office, and I finally got a firm date for last Thursday.  So we got up extra early, braved the rush hour traffic into Charlotte, got to the building in plenty of time just to find guards outside saying there was an unresolved security threat (an abandoned package) and we got to sit around for over an hour just waiting.  Finally the nurse that was going to be supervising my first dose found us and was telling us if we could not get in by 10:00 AM we would have to reschedule.  Luckily they cleared up the security problem at 9:45 AM so I could proceed.

Fortunately my first six hours on Gilenya resulted in six hours of boredom, sitting in a recliner, reading and napping, with hourly check-ins by the nurse, and more EKGs.  Since I was forewarned about the Gilenya causing changes in the heart beat and blood pressure I prepared myself by taking my heart and circulation related homeopathic combination remedies, as well as my usual Hawthorn Berry pill.  I did so well at the doctor’s office I was allowed to leave a half hour early.  I do not know if the homeopathic remedies helped, but since I always have low blood pressure I figured it could not hurt me to prepare myself (low blood pressure as in the nurses &/or doctors sometimes looking at me to make sure I am still alive, conscious, and functioning.)  Fortunately everything worked out well.

In preparation for my new drug I had been tapering myself off my old MS drug gradually, this past week I have been on half of my usual dose of my old medicine (dronabinol--off label.)  That was not pleasant, I gradually lost half of my endurance, my walking speed (with 2 canes) went from 3 to 4 MPH to 1 MPH, I started teetering on my feet especially when I had to turn in place, my almost non-existent sense of balance got worse, and I was not always able to react correctly when talking to people.  If that was not enough my muscles, suffering from fibromyalgia,  started hurting and I essentially ended up wearing my Back on Track human products 24/7 to help with the pain.  Riding in the car into Charlotte and back just totally wiped me out, when I got home I was not able to do anything other than lie in my bed and play on the computer, even reading was hard.  My ability to cope with the problems of life also got worse. 

The horses noticed my deterioration; last Sunday Cider kindly told me my balance was worse than ever as I ended up slouched over with exhaustion during our ride.  She did not take advantage of it; she is a very good horse that will tone down her reactions for people who can’t ride well.  Last Sunday she toned down her reactions just like I was a beginner, though she did allow me to keep contact at the walk.  That was very gracious of her.

When I got my lesson on Wednesday I told Debbie I wanted to ride Mia since I can rely on that mare to tell me exactly what she thinks of my riding ability!  Mia was OK with my walk, though she did not like my contact that much so we went around mostly with a sagging rein.  When I asked her to trot, though, my contact was COMPLETELY UNACCEPTABLE.  Mia had been allowing me to keep contact throughout the last two summers without many problems ever since I figured out my problems with the super slippery technical fabrics, but on Wednesday, even though I was in my FITS deerskin full seat breeches with saddle soap rubbed in, she started flinging her head immediately when we trotted.  Debbie corrected me a lot during my ride, my left hand was wandering around, then my right hand was wandering around, I lost track of my lower legs a few times, and I just was not riding up to my usual standard.  I was also having problems relaxing my legs enough so my weight could sink down into my heels.  I most definitely did not feel secure in the saddle!  I wanted this ride so I would have a comparison point for when my new medicine starts working.  It has been distressing to me losing so much of my physical ability; I hated having to pay close attention to every movement so I would not fall.  At least I was able to continue rasping Mia’s toes down so her feet did not get worse.

As for what the Gilenya is doing for me, well it is hard to tell right now, I’ve taken only three of the daily pills.  I had to walk around outside yesterday, and I was still only able to walk very slowly and I got tired quickly.  My balance seems to be better, I can turn around in place without much difficulty, and I do not seem to have to constantly touch things to keep my balance (furniture and wall walking.)  Tomorrow I may get to ride Cider and see what she says about my balance.  Otherwise I am still getting tired and shaky when I have to do anything.  I hope I will improve over the next week.

My new house is now sitting on my land, getting set up, a process that seems to take FOREVER!  Then it needs to be inspected, then we need the water, septic system and electric hook-ups,  and then more inspections before we can move in.

I did manage to read both of William Steinkraus’s books, “Riding and Jumping” for maybe the fifth time and “Reflections on Riding and Jumping” for the first time.  I was VERY IMPRESSED by the “Reflections on Riding and Jumping” book.  I have been discussing these books with Debbie, and she told me that between her 4-H, Pony Club and IEA (Interscholastic Equestrian Association) groups she hopes to be able to come up with an Open Jumping team.  So I lent Debbie the book since it is the best written book I have on this sport, and William Steinkraus has the credentials to be credible (Olympic Gold Medal among other wins.)  One thing that really impressed me about William Steinkraus was that when he was on the USET team he had to be a true amateur, so he worked during the week in NYC and only got to ride on the weekends.  If you ever do show jumping or want to do show jumping, read this book!

Has there ever been another week-end rider that ended up winning an Olympic Gold Medal in jumping? 


Have a great ride!

Jackie Cochran        

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