I am so sorry to hear that @Delta1166.
I was diagnosed in 1993, and I was in pretty bad shape then. Then I tried their MS drugs (Betasaron (sp?) and Copazone) and I got worse. Betasaron got me so bad I ended up on Social Security disability the first time I applied for it.
I went my own way mostly. I got back into riding and I am still riding which is much better than I thought I would be when I got diagnosed in 1993! Riding horses got me out of the electric wheelchair.
I got my lesson today. After my problems with contact last week (MJ canted his head to the right) it was obvious to me that I had to start wearing my ice vest again.
THEN my AC system broke down. My house got rather hot inside, 85 F. We had every fan going, I had my technical fabric summer riding clothes on, and I finally remembered I had a bottle of Honeysuckle flower tincture.
Honeysuckle tincture is interesting. Many years ago I was going through a Traditional Chinese Medicine Materia Medica, desperately trying to find another herb that could help me. I read the Honeysuckle flower entry and said to myself āMaybe this will help me with my heat sickness.ā I was right, as far as I can tell (and I have nothing to back this up from medical literature) the Honeysuckle flower tincture changed the quality of my sweat, from rather thick hard to evaporate yuck to much thinner sweat that evaporates easily, cooling me down naturally.
I decided that I HAD TO break down and start wearing my ice vest, even the Honeysuckle tincture is not enough to improve the transmission of the nerve signals down my demylenated neurons. I had been delaying this because I was afraid that the extra weight and coldness of my ice vest would make it harder for me to get up into two-point properly. So I practiced my 2-point, especially after MJ, the horse I ride for lessons now, made it very clear that if I want him to move properly during my lesson I HAVE TO stay up off his back for the first 5 minutes of my ride.
The ice vest worked. I have been working on my 2-point for many weeks by now and I had not been able to get my seat completely out of the saddle. It was hotter today, but for the first time in years I was able to get my seat completely out of the saddle. MJ approved, he moved better and was more cooperative with me when I had to sit back down.
Debbie, my riding teacher wants me to start cantering again. MJ the horse has made it clear to me if I want him to make an extra effort I have to stay off of his back. I had been planning on sitting the canter but MJ convinced me that this might be a mistake, so I started working on getting my muscles strong enough to stay in 2-point.
Before today I was starting to think that this was hopeless. Now I think I can do it without abusing poor MJās back thanks to wearing my ice vest.
Too much heat makes it almost impossible for nerve signals to get through my de-myelinated nerves. The ice vest cools down my spinal nerves enough so that they can work properly!
Now I am wondering if I should plan on wearing my ice vest even on the coldest days of winter, because I had not been able to get my darn seat completely out of the saddle even when it was just above freezing.
MJ stopped having issues with my riding today. I will be wearing my ice vest for the rest of the summer, probably in the fall, and maybe in the winter. I just HATE feeling cold, but if it makes the horses I ride happier with me I will just have to get used to my torso feeling cold all year.
Im glad to hear your finding solutions to keep up with your riding. Have you tried a cooling cap under your helmet? I saw one that is made to fit under construction helmets and it looks like a snug fit beanie.
Also what brand of tincture do you use? Iāve tried essential oils before and it seems the right brand is everything.
My current Honeysuckle tincture is from āSecrets of the Tribeā. I searched on the web and they sell a 4 fl. oz. bottle which should last me a while. I started off with around 10 drops in an 500 ml. bottle of spring water, today I put in what got into the dropper when I loaded it up in the bottle.
I never got into essential oils. I am of that group that believes that a whole herb can have mitigating ingredients that work together to make the herb work better. I am not against essential oils, I just know that I do not know enough to make an educated decision about what to use for my MS, and my body has never ādrivenā me to find out more like it did with the herbs.
I once tried an evaporative cooling cap, it heated up my brain (when I took it off after riding the cap was HOT!) Right now the Columbia Omni Freeze Zero neck gaiter seems to be working some, at least when I take it off it is not HOT, and it absorbs all the sweat so it is not dripping down into my eyes, so it gets rather damp instead of HOT.
I NEED a MIPS helmet that has air-conditioning, and the same for a protective vest. Until then I just muddle through during the heat of the summer.
I have psoriatic arthritis and some of the drugs caused what I was told at the time was an āMS-likeā reaction. Could I ask what meds you think caused your problem? You can pm me if you want. My rheumatologist of course denied the entire med connection. It was a urologist 
who picked up on it. Once I stopped the med my problem resolved in about 6 weeks.
Sorry to hi-jack the thread Jackie!
No problems cayuse. Hi-jack all you want.
There are probably plenty of things and/or micro-organisms which can cause MS-like reactions. I would worry/or ask my doctor about just HOW these drugs cause an MS-like reaction and if they have any protocols to prevent neuronal damage.
I have absolutely no proof, but right now I am leaning toward a hypothesis that some intra-neuronal parasite like Lyme or who know which intra-neuronal parasite is/could be causing a persistent attack on nerves from the personās immune system.
In other words I am really leery of this term āauto-immune disease.ā I could understand it in the days before biopsies and electron microscopes since they could not actually find anything. Maybe they will find the true cause/causes of the auto-immune diseases.
When I was younger I would read stuff by doctors absolutely insisting nothing at all could get into the brain because of the blood-brain barrier. Now they have changed to yes, a lot of stuff can get into your brain and damage it. We need more research!!!
I lived in South America as a child. Who knows what I picked up there. I do know that I do not seem to be following the ānormalā course of MS, and I most definitely know that the drugs developed specifically for MS just make me much, much worse, crippling worse.
I started having symptoms on Humira, was on Remicade for years, and then stopped Remicade about 8 weeks ago. Iām still having all the funky neurological stuff, AND Iām miserable with back pain 
. I was very grateful that my rheumatologist had been involved in several publications about the links between the demyelination and the biologics.
Interestingly, Jackie-- my āinflammatory arthritisā issues started in earnest after I got very ill with dengue fever. Iād had strange symptoms in my late teens, but went completely haywire after I had dengue in my early 20ās. I also have Ehlers Danlos syndrome, which doesnāt typically cause me too much of a problem except for my propensity for major joint injuries (a great idea to ride horses then), but my doctorās theory is that because my collagen structures arenāt ānormalā my body is constantly in a state of āTHIS DOESNāT BELONG HERE!ā This would make sense both from the AS standpoint (connective tissues) and nerve sheath standpoint, I suppose. Biology is so fascinatingā¦
Thank you. My symptoms started on Enbrel and the Humira tipped it over the edge. You are very lucky to have the rheumatologist that you do. I finally changed to another after being told my symptoms (of demyelination) were psychosomatic. My new rheumy told me she is ānot brave enoughā to put me on any biologics because of the numerous problems I had on them, and honestly I would not take them anyway. So I hear you about the pain (feet and neck). No fun!
Have you heard of the Medical Medium? He believes Epstein-Barr virus is responsible for all so-called autoimmune diseases. I had mononucleosis when I was 19; Iāve been battling fatigue for about 10 years starting about age 38. I havenāt really tried his diet recommendations, but I started seeing a naturopathic doctor and weāre using tinctures, etc., presuming that this is EBV. I got my doctor (DO) to do the EBV blood tests and the ND thought it looked like an active infection.
The thing Iām struggling with right now is that Iām pretty much completely numb in my right leg and losing dexterity and strength in it, as well as in my right handā¦.and Iām having spasticity issues on that side as well. I have a 1600 lb ISH mare who was a fun challenge when I was extremely fit (I was a competitive weightlifter before all of this came on), but now is just too physical of a ride for me and Iām positive Iām driving her nuts because I end up just clenching on that side. Iām not sure sheās the horse for me long term (for a variety of reasons), so I think Iām at a bit of a crossroads both in terms of horse and discipline.
Ladies I am an outlier here, I never got into competing. I never got into dressage. I did jump 3ā6" for many years, but back then adults were expected to be able to jump 4ā since that is where the open jumping started at. I just never had your type of goals for my riding.
As a handicapped, crippled riderāI greatly prefer riding Arabians. I can go up to an Arabian I will start riding, explain to the Arabian exactly what my handicap is, how much of a klutz I am in the saddle, how I will drop a rein accidentally occasionally and anything else I can think of. I end all this with a solemn promise that I will do everything I can to avoid hurting his mouth.
Arabians are small. Arabians have been bred for centuries to be RIDING HORSES, and that is all they were bred to do. If you need a bigger horse there are Thoroughbreds, if you donāt like Thoroughbreds there are American Saddle Bred horses, both breeds of horses excel at being RIDING HORSES. Quarter horses also qualify and the better ones have a good bit of modern TB blood in them to make them better riding horses.
Carriage horses and draft horses were NOT bred to be riding horses, and that is the root cause of a lot of modern riding problems with the āwarm bloodsā. Their gaits and their movement were NOT bred in to become good riding horses, they were bred in to make super flashy carriage horses, pulling a good bit of weight up and down hills when needed, or really strong draft horses who could pull tons of weight. They can be really good horses, for that purpose, pulling vehicles. (I will give a pass for Trakheners (sp?), depending on the individual horse.)
If you canāt find what you want in this country there are numerous Barb descended breeds, especially in the Iberian Peninsula who were also bred to be riding horses.
I know my limitations in the saddle. I want to ride RIDING HORSES, of a reasonable size (13.2-15.2 hands high), whose gaits were bred in to be comfortable riding gaits first, with a few breeding lines going into high stepping (ASB) but still comfortable for the rider.
That will no longer win at dressage nowadays. That is a great pity, since dressage was developed to improve RIDING HORSES. Now it seems to me to be more to enable a rider to control a carriage horse, with big gaits.
And yes, I know all the warm blood breeds have lots and lots and lots of TB and Arabian blood in their pedigrees, but they rewarded and bred on the taller horses who mostly have the super impressive carriage horse gaits, not the more energy conserving TB and Arab movement. This can make them harder to ride and control.
IF you are crippled, handicapped, whatever, you will do much, much better riding a horse of a breed who was developed first and foremost as a superior riding horse, one that does not tire you out riding their natural gaits, one who is conformed to be responsive to the reins and all the other aids we use.
IF I ever buy another riding horse it will be a purebreed Arabian, to me nothing else measures up for my particular needs. A horse who has been bred for centuries to be a comfortable riding horse, who if they like their rider will ACTIVELY work to take care of you if your body all of a sudden stops working.
Debbie first put me on this Arabian gelding who was definitely too much horse for beginning riders. He would bolt, he would carry his rider off to the gate, and he demanded, absolutely demanded riding that suited his build as a riding horse. He was a very spirited horse.
I explained to this Arab ALL my physical difficulties (along with the promise to never hurt his mouth) and he forgave me all my extensive riding faults. If he felt me get unsteady in the saddle he would do his best to fix that, If my arm or leg stopped working properly he merely adapted his movement to my current abilities. If I dropped a reināno problems. When my body worked properly he could do everything I asked him to do. I LOVED riding that horse!
I am sure that there are horses like that in other riding horse breeds, I advocate the Arabian because it is much more likely to be that way with me, an experienced rider who sometimes rides worse than any beginner. The Arabs seem to UNDERSTAND at a deep level that sometimes I just cannot ride properly, and are willing to make adjustments to my body which can change from week to week, and sometimes minute to minute.
Get yourself a smaller horse of a breed that has always been bred for riding. You might add decades to your riding career even though you will have little hope of ever beating a warm blood behemoth in the show ring.
These horses, the small riding horses, can be a lot of FUN to ride.
Sorry for the lecture, but warm bloods were not developed to take care of their riders (there are exceptions of course) or for comfortable walks, trots and gallops, they were developed to look really impressive with high stepping impulsive gaits suitable for pulling a carriage in the park where you want to impress other people, and often nobody ever rode them.
I rode on Sunday. I did pretty well, kept up in two-point (more or less) for the first five minutes which helped the mare.
It was not too hot, I forgot to put on my ice vest and I forgot to turn on my neck fan.
I thought I was doing so well, then when I got home I found out that I had forgotten both my canes. I left them hanging on the riding ring fence.
Good pointāin spite of being hot and tired I was able to walk to my van without difficulties. Yeah for riding horses!
Bad pointāthe heat is definitely affecting my memory. This is not the first summer this has happened, but usually lurching toward the barn reminds me that I forgot my canes at the riding ring.
The heat is terrible! I hate cold worse than heat though. In January I will probably wish for temps in the 90ās.
I had my lesson yesterday, and it was hot. I thought I was prepared for the heat with technical fabric neck gaiter, shirt, tights (silicon full seat), ventilated half chaps, neck fan and I put the honeysuckle tincture in my water bottle for my ride after chugging down more water than usual, with the honeysuckle tincture in it.
Man I got HOT even though my ride started at 9:00 AM. Of course all the humidity from the hurricane was blowing up our way.
Then my riding teacher wanted me to do the dressage type sitting trot instead of the easier on my Forward Seat type sitting trot (crotch seat, little/no weight on my seat bones.) OK, no problems, I learned to sit the trot in the dressage position 50 years ago and I did not bounce in the saddle.
I did not trot much at all, around 6 short trots that all together might add up to one ride completely around the ring.
My neck got sore/hurting. My butt/upper thigh muscles got sore. It has been almost 36 hours after my ride and I am still feeling exhausted.
It IS nice that my riding teacher saw progress with MJās back getting stronger from me doing the first 5 minutes of my ride in 2-point, strong enough so that me sitting down and back in the saddle did not seem to ātriggerā anything. But boy, his spine was stiff even though I have succeeded in getting his back āswingingā, side to side is fine, up and down is iffy.
The best part was when I asked MJ to halt with the attitude of ātake your time.ā MJ took his time (2 strides), and his back softened just as he was doing his downward transition, he softened his back enough so I almost felt like I was riding my first horse at the sitting trot, smooth. My riding teacher was full of praise for that downward transition.
But I am feeling so tired. Riding in a dressage position seems to require more energy from me than staying up in 2-point, posting the trot, or doing my ācalisthenicsā on horseback.
And I was just sitting there!
Bit late to the party, but wanted to chime in. First off, congrats on sticking with it! My flavor is Fibromyalgia. I have (thankfully) decent mobility but muscle fatigue/low stamina drives me insane so I get the frustration. Itās taken me over a year to get back into cross-rails and 2ā verticals. My lesson horse is a TB who wants to be a lazy QH. Weāre just now getting him to be forward on minimal leg pressure, but heās still being a stinker when Iām weak (he likes to ignore me to take the least effort option by drifting around where I want him to go).
I have to be careful as my legs will quit and I get tremors in my right hand. Iāve plateaued there at about 4 jumps in a row riding at the canter. My trainer thinks that just doing more jumps more frequently will help. Iām skeptical but willing to try. Itās so unnerving when my body just goes āIām done. Screw you and those other two jumps.ā
That said, I started to use silicone full-seats because I could not steady myself in the saddle in my tights. I was fighting all the time to stay in position which lead to exhaustion much earlier in the ride. I also do the two-point stretch at the beginning and it does help (though itās so exhausting to do!). I do a lot of ā5 steps posting 5 steps two-pointā to get my hips flexible during my ride.
I avoid sugar and caffeine as they make everything worse. Though I love both and get into cycles of eating it and then quitting it as itās self medicating the fatigue. (I need to up my vitamin D intake again, test shows Iām low).
I actually have an orthopedic appointment on Friday to look at my SI joint as itās acting funny, and then need my rheumy to look into POTS as a co-condition. Oh the lives we lead!
added: I miss my arab/appy mix. Had some quirks from a bad previous owner but I knew I could count on him to get me over a jump, his ālock onā was amazing to feel. I am not a fan of TBs though my lesson guy is okay, he just doesnāt have the same level of focus/effort.
Also never had mono but I know mineās likely genetic as my mom AND brother have it.
About your horse just plugging along.
I have found, many, many times, the lesson horses I ride asking me āAre you sure you can ride this todayā when I ask for something more challenging. Some days (especially the first time I introduce a movement) the horses will suck back, just loaf around, and donāt want to go faster than a snail. (Arabs, half-Arab, Appendix QH).
I then have to convince the horse YES, I can ride this. Often I have to smack my crop against my half-chaps (not the horse!) If that does not work my Spursuader spurs, applied at the correct time of the horseās stride, help convince the horse.
My riding teacher and her lesson horses have LIMITS on me wearing spurs. Back when I rode with just POW spurs I was pretty good when it was cooler, but late Spring my riding teacher would come up to me and take my spurs off. This happened with every single type of spur I tried, then I would have to ride with naked heels, using a lot more energy to get the horse going. My riding teacher and the lesson horses allow me to use the Spursuaders year round even as my MS has gotten worse over the past decade.
But rejoice! You can do SO MUCH MORE than I can riding. I canāt jump, cantering is totally exhausting, and after 30 minutes I am DONE and need help untacking etcā¦
The horses are just trying to take care of us, and I am really glad that they are!
I have never used spurs, though with how my legs are it wouldnāt likely be a good idea as I get floppy legged pretty quickly. He just is opportunistic about being lazy and does it to everyone who doesnāt ride him meticulously (great for teaching, not so much for conserving my energy levels), so I donāt entirely feel like the odd-rider out on that one but it is frustrating when I need him to pick up the slack and he just wonāt. I always have a stick and tap him with it to remind him to listen. He never needs any kind of a whack, just a poke.
Our lessons are 30 minutes so I havenāt done much riding beyond that time frame, and sometimes I canāt even make it 15 minutes in. Those days really get to me.
I am so grateful at what I can do for sure! The full-seats have given me a lot more freedom but itās still a work in progress. I hope you continue to find improvements and can keep enjoying riding!
Since I am doing just 30 minutes a week riding 2 horses at separate stables, going around and around the ring, boring, boring, boring, I decided to spice up my riding life somewhat.
I started using the double bridle again, not much at first but lately it seems to make both me and the horses I ride happier. I started using double bridles around 45 years ago, and had introduced several horses to one, so my wonderful riding teachers let me try it out again.
Then I found out about titanium bits, and I finally saved up enough money for Fager double bridle bits, the blessed horses donāt seem to mind at all. I keep contact with the bradoon and rarely twitch the curb rein. The horses carry themselves slightly differently, with a little more weight on their hind ends (on a loose curb rein.) They ātalk to meā when they manipulate the bits with their tongues, which they can do because I ride with light contact (which my riding teacher often praises.) The horses seem to have fewer questions about what my hand aids mean. They keep their lower jaws loose, relaxed with a relaxed tongue that idly plays with the bits.
These are not my horses. NO hunt seat stable seems to have a double bridle in their tack room, so I have to provide my own. Happy horses, happy rider, happy riding teachers, you might have more fun if you try this. Riding with a double bridle is not rocket science, the horses seem to understand it just fine.
Just in case you want to do something different with your rides, something fun!
Oh, you may want to look at ābumper spursā. These are Western spurs, some variations are used by barrel racers, because it is a very mild spur that does not poke or hurt the horse. My riding teacher liked the results when I tried a slip on pair I found, too bad they would not stay on when I walked on the ground.
Iāll have to take a look into it! Iām only doing one 30 minute lesson a week right now and I have to make sure I rest the next day or I end up hurting the rest of the week but itās helped a lot with my mobility and strength for sure. I want to ride more but right now the budget wonāt allow it.
When I finally could get back into riding I started off with just one 30 minute lesson a week too. It is definitely better for me to ride more often, but I did make progress with my ability to walk on my own two feet with just one 30 minute ride.
My lesson stable has provisions for students who want to do āhomework ridesā. I think they are half the cost. The student, of course, has to catch, groom, tack up, cool off, untack the horse and turn the horse out again. Since I am elderly and crippled this stable is very kind to me and they will catch, help with the grooming if needed, and turn the horse out again, but everybody else has to do it all themselves (for both lessons and homework rides.)
If your riding teacher thinks that you ride this horse well enough she might consider this as an alternative to a second lesson you just canāt afford yet (BTDT). Besides, if she allows you to use a double bridle youād also be giving the horse some valuable experience which is out of the horseās ānormalā. Donāt jump, just WTC, it sounds boring but that is what the double bridle is for.
My riding teacher allows me to use the double bridle for another reason. With MS people lose brain mass and nerve connections can deteriorate or disappear. With new demands the body CAN grow new nerve branches and connections. Using the double bridle is an additional challenge of finesse and manipulation of the reins. You will be growing new brain pathways, new pathways that your body may find useful for other activities. Plus you can do this just at a walk, which will make you much less tired the next day (speaking from experience.)
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