I rode yesterday, at a walk, for 30 minutes.
I am still tired.
One good thing, my left leg did not think the left stirrup was way too short, and my right leg had less trouble reaching down to the stirrup, so maybe my proprioceptive sense is coming back on line.
Sounds like good progress and hopefully you are feeling tired in a good way, from good exercise, and not fighting your muscle spasms. So glad you found a doctor willing to ally with you and not dictate to you.
It is getting even worse. I think the Gilenya mostly destroyed my proprioceptive sense. The funny thing is that I can walk mostly OK, including across uneven ground without my canes or walker.
But on horseback it is another thing entirely. My left stirrup feels too short but from the front it looks like my left stirrup is at least two holes further down than my right stirrup, which is the stirrup that feels too long. My riding teacher, bless her, has been taking pictures of my lopsidedness, she had to because I FELT balanced and normal. I can no longer trust anything I feel from my body about my side-to-side balance on horseback.
The horses I ride are saints. This lopsidedness of mine makes no sense to them so they politely ignore it, while keeping contact, obeying my aids for speed, turning, slowing down and halting. They are not diving off to the side when my seat unconsciously shifts, they are not bucking out of despair, and they just put up with me.
I am SO GLAD I am not trying to learn dressage because right now I would turn a properly trained dressage horse bonkers as they desperately tried to find center under my butt.
I hate, hate, hate what Gilenya did to my brain and my body. I have had bad times before (like after Betasaron), but I was more aware that something was wrong. By taking Gilenya I wiped out the positive results of over 10 years of riding lessons with the best riding teacher I’ve ever had, the really bad thing is that if Debbie had not been haranguing me about my lopsidedness I would not have realized it at all because everything felt normal to me.
When she gets me centered, my body cannot tell the difference from being lopsided.
I am in despair. Should I stop riding because I am being unfair to the horses? Should I apologize to the horses and keep on riding so I am still able to walk, in the hope that the riding will help my brain heal enough so I can again realize it when I am leaning to one side or the other?
Otherwise, getting back on the Dronabinol is doing some good for me, I am no longer getting the feeling that I HAVE TO use my wheeled walker when I walk, and I can even walk around 30 feet outside without any my canes or my walker. I am no longer having to use my canes to walk around the house, and I no longer have to stick close to a wall for support. I feel confident about climbing in and out of the bathtub, and I have been able to do that safely.
I have yet to regain my old speed at the walk, I don’t think my body trusts my brain enough to walk fast. However I am walking faster than before I got back on the Dronabinol.
I am now at half of my old normal dosage of Dronabinol. My body is telling me to increase slooowly, and I am listening to my body about this.
If my riding was not super, super, super messed up I would be pretty happy. And the worse thing is that I did not realize that my riding was super, super, super messed up because the horses were too polite to tell me in no uncertain terms. Well, the 30 yr. old Arab mare was trying to tell me she no longer enjoyed carrying me around, but she did not tell me why by her actions under the saddle. Good thing I listened to her because she does not deserve my bad riding. What she did was to stop taking pride in obeying me well, instead of giving little snorts of approval when we did stuff right she started looking a little sour. But that was IT, no head slinging, no sudden veering to the side, she never refused to move under me, all reactions that in the past she has shown herself perfectly capable of doing. I guess the horses are nobly taking care of me since I cannot seem to help myself right now.
Bless all school horses!
Keep on riding. Horses have a way of knowing what you are and are not capable of. Sounds like this is a bright spot in your life - don’t snuff it out just because you can’t do it perfectly. These ponies are God’s gift to us and what an amazing gift it is.
[QUOTE=sorrelfilly721;8912366]
Keep on riding. Horses have a way of knowing what you are and are not capable of. Sounds like this is a bright spot in your life - don’t snuff it out just because you can’t do it perfectly. These ponies are God’s gift to us and what an amazing gift it is.[/QUOTE]
I would agree with this completely but please make sure you keep yourself safe as well. It’s okay to not ride perfectly… heaven knows my dear mare put up with my very crooked “self” for many years without complaint.
Stop riding only when your personal safety is compromised and even then, if you can get someone to help you, by all means, do that!
Thank you!
Ever since I re-started riding one of my main goals has been to make the horses as comfortable as possible. Micklem bridles, BOT saddle pads, poll cap, etc…, bits, bitless bridles, riding fly sheets, trying to find a saddle that works well on most of the horses, etc…, I’ve spent a lot of money making the horses comfortable!
I know my physical problems irritate them. My hope has been that if the horses are comfortable everywhere else, that they will accept my many imperfections in the saddle and with my hands. So far it seems to be working, my riding teachers seem to like me working with their horses and the horses haven’t been bad to me at all—they usually obey my aids.
I rode this morning. Shannon, the lady who owns the horse, patiently looked at me all during my 30 minute ride to catch when my stirrups were uneven and when my lower legs went wonky.
I seem to be improving a little bit, if I get the frequent reality checks. I worked hard (at a walk), trying to keep my stirrups level, my right lower leg from wandering back, and I managed to walk around some in the vertical far position. I set up my RS-tor riding aid so the center ring is truly centered, and that helped me check to see if I was off center.
I still have the problem that when I am centered and my stirrups are even I feel like I am listing off to the right. I sure hope I regain my sense of balance; even though my sense of balance was never that good I now know that having some sense of balance is infinitely preferable to having none.
I am still walking on my own two feet a lot better, I am able to go pretty far without any walking aids other than spreading my arms for balance sometimes. That, at least, is a lot better than where I was a month ago.
Jackie, I do not have anywhere near the issues you have, but I am not straight. What feels straight to me, is not straight. I tend to sit to the right. When I am even in the tack, I feel like I am listing to the left. I also like to sit with my right shoulder dropped down and forward - in either direction. (I have perfected going to the left, but going to the right is a work in progress.) I struggle with these issues but my horse is a saint and he forgives me my faults. I am sure your horses forgive your faults as well. Keep riding - it is good for your body and soul.
I had a lesson today.
I had made sure that my RS-tor riding aid was attached to the saddle so that the ring that joins the straps to the saddle were of equal length. On a normal saddle I could use the pommel for this, but my Pegasus Butterfly saddle has an extremely cut back pommel area, so I had to figure something else out so I could see when I was off center.
By looking down and noticing when the center ring was off to the side of the line of the withers I was able to SEE when I had shifted the saddle off center, and correct myself back to center. It also helped when I had my riding teacher tighten the girth after 15 minutes of riding.
By the end of my lesson my riding teacher said that at worse I was off center the equivalent of one hole on my stirrup leathers, which is much, much, much better than the three holes I had been off center previously.
So now I can check myself and not be totally dependent on someone on the ground. I still feel very off balance when I am centered, my right stirrup leather still feels too long, but at least now I can correct myself.
I’m so sorry to read your story. It’s all very heartbreaking and also very close to home.
I have had RA since 2005. At the time I was 25 and managing a very active dressage barn, riding 8 horses a day and was super active. My disease progressed faster than any of the treatments could keep up and my condition deteriorated very quickly. I had to make the incredibly hard decision to quit my job, which also meant leaving my home of 11 years as I lived in a house on the property where I worked. I was for sure that this would be the absolute end of my riding career and riding horses in general.
The 3 years after I stopped riding and left my job were horrendous. I struggled with treatments, surgeries, a stroke at the age if 31 and liver cancer. Life was bleak for sure! The struggles with doctors and medications like those that you have described were so disheartening. My body had started to react to every medication they put me on, hence the stroke caused by one of my treatments. It got to the point that my doctors essentially gave up on me. The insurance companies wouldn’t approve treatments for the reason that I had not shown improvements with past medications. So basically just let me die because it wasn’t worth the money to try to treat. Forget about the hours spent trying to have records released and sent. I was actually told by one office that they could not release my records because they didn’t have them. That a third party was responsible for record retention and I would have to “try” to get my records through them. I called nearly 100 times and never got an answer. I finally threatened to sue the doctor if they did not release my records and I had a CD within days. I am not the type of person to cause a stink or confront people, but I had to become my strongest advocate quickly. There is one doctor I’m still fighting with. After several formal, written requests and many, many phone calls, I will be having a lawyer contact them to get my records sent.
I was so very close to giving up hope. But I kept fighting. I went to what felt like was a million doctors and became my best advocate. It took years, and was discouraging and exhausting, but I finally have a team of Rheumatologists, neurologists, oncologists, GI’s and an amazing GP that will fight for me as hard as I’m willing to fight for myself. I am also on several off label medication now to keep me stable. My rheumatologist believes in treating me with what works and not what is generally prescribed. She thought outside the box and saved me.
I have finally become stable enough to begin to ride again. I’ll never be able to ride 8 horses a day, but I can muster a few days a week and a fun horse show here and there.
I know the devastation and frustration you are feeling. My heart is with you! Don’t give up! Be your best advocate and don’t settle for doctors that won’t do what’s right for your disease. Autoimmune disease is different in each person and when you finally find a doctor that truly understands that, your life will change.
I am sending you love and gentle hugs! I would love to hear an update an how you are doing.
Hi, a quick update.
I put the bridging shims in the Contender II saddle pad and that seems to have stabilized the saddle somewhat. I went from feeling a 3 hole difference (both stirrup leathers, new, on the same hole) to feeling just 1 hole off without touching my stirrup leathers. Now the Pegasus Butterfly saddle only shifts 1/2" to the left, it shifts a lot less, and it is easier for me to get it back to center.
Then it occurred to me that my legs may not be the same length, so I had my husband measure them, and my right leg may be 1/2" shorter than my left leg. So I’ve shortened my right stirrup leather 3 half-holes, I still feel uneven but it is not as bad.
Today my teacher said I looked much more centered in the saddle.
I am gradually getting my strength back, and I am slowly building up how much posting trot I can handle in a ride. I am also working more on my two-point.
My new doctor did give me a second one month prescription for my medicine, so I continue to gradually increase my dose. By the time I see my new neurologist I should be back on my old dosage. I am walking so much better now!
TaraB_connected-rider, I am sorry you went through so much hell trying to get treated. Good luck with your riding!
Thank you for posting your update. It sounds like you are doing better and getting stronger. Keep on keeping on. You are an inspiration.
You are an amazing woman. An inspiration to me.
Some horses are just plain nice. My riding really stunk when I got my horse; he could have unloaded me as often as he wanted to. Thank goodness he didn’t want to and that he has taken gentle care of me even when I was off balance and all wrong in the saddle.
Bless you and I pray for your continued progress.
I had a good lesson today.
With the 3/16" & the 1/4" ThinLine shims in the pockets of my Contender II BOT/ThinLine pad, I added the 1/8" Pegasus shim ON TOP of the other shims, and this time I made sure the Pegasus shim went to the back edge of the ThinLine shims.
I have half-hole stirrups leathers. My left stirrup leather was on hole 10, and my right stirrup leather was on hole 13.
I only had to shift the saddle to the right ONCE, for maybe 1/2" right at the beginning, then the saddle stayed centered pretty well. This was through the three speeds of the walk, posting trot, and several turns on the hindquarters and turns on the forehand, plus all the curves around the jumps. I did not tighten the girth at all during my ride.
Debbie said that my stirrups remained even throughout my ride.
So I may have finally figured out how to keep my Pegasus Butterfly saddle centered on Bingo who has a sway-back and croup high conformation.
I find it odd that my stirrups were even since there was a 3 half-hole difference between them, but hey, it seemed to work out well.
I still felt like my right stirrup was around a 1/4" to 1/2" longer than my left stirrup, but it did not seem to cause me any difficulties with my seat or my side-to-side balance.
I have good news.
I saw my new neurologist today and he gave me the prescription for dronabinol again. He liked how I was walking, and he found no reason to deny me the medicine that works so well for me, unlike the previous neurologist.
I got back to my old full dose two weeks ago. My riding teacher told me it was GOOD to see the old Jackie back in the saddle again, so I am obviously riding better. I am also walking a lot better, and I am forgetting my canes occasionally.
I have good news.
I saw my new neurologist today and he gave me the prescription for dronabinol again. He liked how I was walking, and he found no reason to deny me the medicine that works so well for me, unlike the previous neurologist.
I got back to my old full dose two weeks ago. My riding teacher told me it was GOOD to see the old Jackie back in the saddle again, so I am obviously riding better. I am also walking a lot better, and I am forgetting my canes occasionally.
Congratulation on your perseverance and finding a doc who will listen to your needs. So glad to hear you are safely riding. merry Christmas!
Great.Great news!
Just an update
I am SLOWLY recovering my physical abilities after being on the Dronabinol for three months. Yesterday I managed to stay up in two-point half-way around the ring.
My new Pegasus Butterfly saddle is really helping me there since I am no longer running into a pommel with my pubic bone.
Another thing that is helping me is my new full grain leather half-chaps. These help me keep my lower leg stable since the leather half-chaps do not slide around on the saddle flaps like the synthetic or suede ones do.
I ordered, and am waiting on, a pair of the Millbrook stirrup leathers. Unfortunately they are back ordered, so I hope I won’t have to wait terribly long for them. I am willing to spend money on anything that will keep my lower leg more stable since that is the basis of my security in the saddle.
Best wishes to you. I am so glad your new neurologist seems to be a good fit. Finding a doctor who listens is so important.
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