Hi~
I’m getting back in the saddle after about 10 years. I’ve had horses since I can remember but I was diagnosed with CIDP, (basically the sheaths that cover my nerves are attacking the nerves) Short story- I’m numb in legs, feet and hands. I have started monthly IVIG treatments.
Anyhoo… I have adopted a wonderful draft mix mare. She’s big and lots of bobble room. I am working to get back to riding. I am hoping to get to the point where I’m able to canter trails. No more h/j for me. 
I am looking at different aids to help with my balance and security. So far I have heard about stability stirrup leathers? Anyone have any info? It sounds like these may help to keep my legs steadier.
Another aid I’ve come across is Connect Correct? This is to help keep me steady w/out pulling on her mouth.
Any suggestions and/or help would be awesome.
This sounds like the perfect question for @Jackie_Cochran. I’m sure she’ll be along to respond.
Disclaimer that I am not familiar with CIDP, but Ive got EDS and UCTD (connective tissue disorders), and do a lot of stabilizing/balance stuff for it. If this wouldn’t work for you, no worries at all.
I do most of my stabilizing work OUT of the saddle. I started Riders Pilates Club which has helped me in the saddle SO SO SO much. It basically recomped my body. I also have a Bosu Ball which is use most days in some capacity. I have a standing desk and am up to 30 minutes standing on the bubble side of the Bosu. That really helps with balance/stability in and out of the saddle as well.
I don’t know how either of those things could work for you, but wanted to share in case they can help anyone looking for ideas.
The stability stirrups/leathers sounds like a great idea! Saddles with blocks might help too? I’ve seen good options with both dressage/western saddles. I tried two one dressage and one western…and it felt like they locked me in TOO tight and caused some pretty good discomfort after a couple minutes in both.
Hi @dandme, I have MS and I am very disabled with it. Many spots of my central nervous system nerves (brain and spine) have lost myelin sheaths. I still ride horses–at a walk. I can still post the trot OK but it is tiring. I find cantering totally exhausting because seated or in 2-point or 3-point my body HAS to move a lot to stay in synch with the horse. I no longer do the sitting trot beyond 3 strides because I am afraid of causing my brain more damage.
Right now I am using the Total Saddle Fit Slim Stability stirrup leathers. These leathers have a loop on top like the Webber stirrup leathers which means that my thigh has no gaps between them and the saddle which helps with the stability of my upper leg while the wide part helps the stability of my lower leg. The disadvantage to these leathers is that I cannot run the stirrups up.
I also used the Millbrook stability stirrup leathers but the Millbrook ones stretch and there is that lump under my upper thigh from the buckle. That lump under my thigh makes me feel less secure.
I use SAFETY STIRRUPS, very important for if you fall off. Mine are the Tech Slope ones, very pricey but they are comfortable to my feet and they help keep my feet in position in the stirrup. I also have a pair of the Alupro safety stirrups but I don’t like them as much but they are cheaper.
I wear silicon full seat breeches or tights. These help a lot.
I also use the “Sure Grip Saddle Seat Cover” from Supreme Western Products. This product is made for barrel racers thus it is made for Western saddles. My riding teacher managed to get it on my jumping saddle and I am very glad she did. My butt no longer slides around in the seat of the saddle. IF you feel really insecure I heavily recommend this product, it even has velcro straps that go around the rider’s upper thigh. My neurologist also thinks it is a great idea for me.
I also invested in a Home Horse riding simulator. I put a long bubble balance on the platform and the person who helps me can use the bubble balance to tell me if I am in balance. With my particular brain damage I do not feel in balance when the bubble balance says I am in balance. With help from my DH or one of my riding teachers my body has learned how to get into balance even though I might not feel like I am in balance. For around $1,000.00 US with the bridle extension it has helped my riding immensely, for one I can ride in a saddle if the weather is bad or my riding teacher cannot give me a lesson. I ride lesson horses and they seem to think that my balance is better than before I started using it. I use my ancient Crosby PDN saddle on it with Prussian sided English stirrups on it–the Fillis stirrups cause my feet INTENSE pain that I do not get with the Prussian sided stirrups. Some time this year I hope to get stability leathers for it, but since I am not riding a horse when I use it I do not desperately need the stability leathers.
For reins I either use web reins with colored stops or notch reins onto which I put color markers right next to the stops. The notch reins look sort of like the ones you talked about but have less cushion.
I did put an “oh shit strap” on my saddle but I rarely use it.
Another thing that gives me some peace of mind is the RS-Tor Rider Security Aid Handle. It is made to be held in the hand with a rubber disc at the end to prevent it from slipping through the hand. This was made so a falling rider would rotate in the air so they land on their feet. The last two times I fell off the horse I did NOT have it in my hand–my bad.
I also have the no-longer-made Rider Grips on my saddle flaps where the knee roll and the front of the flap are. These help some. There are other sticky things that have glue on the back, maybe talk with a saddler to see if they have any ideas, because these Rider Grips do increase my security in the saddle.
I ALWAYS ride in an MIPS helmet.
As far as not pulling on the horse’s mouth I train all the lesson horses I ride to go on loose or sagging reins for the times that I just cannot give the horse good contact. Combined with voice commands I feel secure in the riding ring and I used to ride on the trail with loose reins all the time at all three gaits.
The lesson horses I ride really prefer me using the titanium bits (Fager Bits USA). I now ride in a double bridle because the horses seem so much happier with my hands when I use the double bridle. On the double bridle I am using the Fager Victoria Mullen mouth curb with 70 mm shanks, and on my present lesson horse who has a fussy mouth I use the Fager Adam Leather Bit with Fixed Rings. This bit has regular sized snaffle rings. The Fager people told me to use a wider Weymouth curb with regular size snaffle ring bits so my Adam is 125 mm and my curb, the Victoria is 130mm wide. I have more control even on loose reins (75% of my rides) with the double bridle which means that I can use much lighter contact and use lighter rein aids. I have introduced maybe 7 to 10 horses to the double bridle with no problems since I’ve never had to use hard contact with the double bridle since the horses seem to like the double bridle and they LISTEN to me when I use it, unlike many snaffle bits.
On less fussy mouthed horses I use the Fager Alice titanium bradoon which has a 3 piece mouth with a titanium roller on the middle link, 125 mm on horses with 5 inch wide mouths, in combination with the 130 mm Fager Victoria Weymouth curb.
I hope some of this gives you good ideas you can use with your horse. Due to my MS exhaustion I can ride no longer than 30 minutes. When I meet the lesson horse the first time I tell the horse out loud what my problems are, and since I am a humane rider the horses usually go not get terribly upset about my handicaps.
I ride Forward Seat at a walk and slow trot. I USED TO gallop and jump but no longer, but the Forward Seat is the most secure seat I have found in over 50 years of riding horses even nowadays when I do not go faster than a school horse trot.
Keep on riding!!!
Hi @dandme I have an autoimmune disease called ankylosing spondylitis. @Jackie_Cochran is a wealth of knowledge. I can also share my experiences riding when I have time tomorrow. 
I do have a question: do you see PT?
@dandme I’m able to sit for a bit and respond to your question. And I really hope this information helps you. I love helping people who also struggle with these types of illnesses, so I hope you know you’re not alone. 
I wrote this rather quickly, but I did break up each section so you can skip at will. I was diagnosed with ankylosing spondylitis a while ago and right now I’m on Humira as well as Celebrex OR Relafen as needed (not together). I also have epilepsy, but my seizures are well-controlled.
Medical: First, I would speak with your healthcare professionals about what they recommend for you do and don’t do in terms of exercise. I know that this is not fun, but depending on what triggers your flares, certain types of riding might trigger your flares. And by certain types, I mean how you place your body in the saddle, or if certain jarring might harm your body. I would also frame it this way: what will help you in terms of horseback riding and what will set you back? When it comes to autoimmune diseases, I think we all discover how far we can go before we hit a brick wall and then we’re sick. Below, I will share my own experiences with riding and working out.
If you are seeing PT right now, I would also speak with them about strength training and management for horseback riding. They may recommend you don’t ride-- I have personally not experienced this, and I have actually had PTs who ride and own horses-- but more importantly they might work with you on ways so you can keep riding. I periodically return to PT since I’ve lost so much mobility, and one of my PTs has actually helped with my seat in the saddle. I was also able to bring in my saddles to one PT session so we could determine what would work best for me with how I sit.
PT has also helped with my pain management since I receive holistic care through PT.
I do want to add, and I’m not sure if you’ve discovered this but autoimmune diseases are very, very temperamental and can be quite-- exasperating-- for lack of a better word. One day you might feel really great, and then you feel sick for a week. Or you may try something and it works! It might work twice! But then you try it again and your body decides it’s trying to kill you. Horseback riding will do the same. Just be patient with yourself and know that you will have good days riding and you will have bad days riding.
Horses and riding (I also will explain exercises): I grew up riding, too, and I got back into horses as a teenager before I was diagnosed with AS. I had always had pretty severe joint pain, so my rheumatologist thinks I probably had AS as a child or even juvenile arthritis. That said, I rode a lot, and staying active kept most of my symptoms at bay. I also ran long distance and did a whole host of other physical forms of exercise that I can no longer do.
Like you, I have a draft (I have a Fjord) who is very, very patient and extremely gentle. Along with riding, it’s important that your horse is patient and gentle on the ground. I am teaching my mare to put her feet in my hands since I can’t bend over. Or, if I bend over, I can’t get back up without my back spasming. She also rests her feeet on a farrier stand while I sit beside her on a stool if I need to do anything with her feet or groom her feathers. To me, these types of things are important so that I don’t risk hurting myself. So, I would emphasize that your horse is safe on the ground in addition to being safe in the saddle.
I have three saddles, three bridles, and a whole host of things I’m trying to help with my pain while I ride. My favorite saddle is my Engel soft saddle since it helps support my back and pelvis and I ride bareback. I find that stirrups, even my MDC stirrups, hurt my knees and ankles. I have not tried stability stirrups, but they might help. There are also a plethora of different types of stirrups to help ease pain. I looked up some of the symptoms for CIDP and they sound similar to AS-- ankle swelling, numbness, pain, etc… If you are experiencing pain, swelling, and numbness in your ankles and feet, I would speak to your PT and a trainer who is familiar with these types of illness about how best to ride. I have yet to find irons or stirrups that help, but the stability leathers might help you. I just prefer no irons and leathers. However, that can be dangerous.
My dressage saddle is okay, but my DP Saddle is probably the most comfortable. Some people find gel seats are more comfortable, while others prefer natural fibers. I prefer my sheepskin cover. I think it’s because these types of fibers support my joints and kind of “heat up” my back, and heat help me the most. That said, there are a lot of saddle seat savers that can help support your back if you are struggling with back pain.
I can no longer sit the trot or canter due to fusion in my spine. Initially, this really bothered me and I became depressed because I felt like a bad rider. Now I have accepted that I can’t move my pelvis the way I should. If you see me ride, I’m super cockeyed. I would say, create a goal, but if you are limited, it’s perfectly okay. I trained my mare and I cantered her five times in a half seat, but I realized I needed a professional to finish her due to my training and physical limitations. The main thing is that you have a horse who is safe, who you can enjoy, and who you can ride. Aim for your goal, but find other goals along the way.
Some other things that I thought of: fleck whip with the mushroom cap (I don’t drop it then); grippy reins; Back on Track gloves although I sometimes will use Diclofenac gel and then put on the gloves; a mounting block; I also have an “oh shit” strap on my saddle and I don’t mind hanging onto my horse for dear life; I also trained her to stop if I start slipping; Eskadron and Rambo rugs are the easiest to take on and off due to how their surcingles are made (there are probably more, but these are the ones I’m thinking of right now); invest in quality grooming tools because you won’t have to work as hard and strain your body; good, quality leather is easier to handle; a gentle walk over any other gait is the best.
I always wear a helmet and I wear a Tipperary eventing vest to protect my spine.
Exercises: I’m cautious about exercising since, as I said above, almost anything can piss off an autoimmune disease. Right now, I’m doing very, very gentle Barre exercises and I ride a stationary recumbent bike. I would recommend speaking with your PT or doctor about they recommend for exercises. I have three yoga positions that I do in the morning, but I’m at the point in the progression of my illness where I can’t do anything too difficult. I’m lucky if I can still kind of twist to itch myself. So, that’s why I recommend asking your doctor. When you’re dealing with a autoimmune disease that’s like having a 24/7 rave party in your body, so you must be mindful of the risk of hurting yourself.
I think that @Jackie_Cochran’s wisdom is very beneficial.
Now that you’ve gotten advice from people who are really good at this stuff, I want to add my journey for your consideration.
I was a rerider in my 40s, and it went very badly. I’ve had rheumatoid arthritis and its fellow travelers since the 90s, probably longer, and was diagnosed in January 1998. I was determined to get back to riding, was doing nose to tail trail rides to see how I did, then I bought the horse I’d been riding. Big mistake.
I found out I couldn’t sit the mildest hiccup. I persisted in trying for about six months, and finally after too many injuries, faced the fact that my balance was just too bad to be riding. It was heartbreaking.
A few years late, my husband encouraged me to learn to drive, and he proposed that we buy some acreage and get riding horses for him and our daughter (then age 10), and minis for me to drive. I couldn’t find a mini that was suitable, and ended up buying a 22 year old Hackney pony who had been retired for a year from a show career in driving classes.
I had a blast with that pony. I was so happy to find something I could do safely with horses. My balance problems didn’t matter when I was sitting in the cart. The pony was very hot, but we did fine together. When I had to retire him due to age related issues, my husband and daughter helped me train her riding pony to drive. I was pretty sure he’d done it before, as training went very quickly, and I found I had a rock solid unflappable pony. We had ten years of bopping around the neighborhood until I had to retire him due to cataracts.
My point is to try all the aids you can to ride, but if it’s still not enough, consider taking up driving. I missed riding all those years I was driving, but was very happy to have a reasonable substitute.
I’m so glad that you were able to have a wonderful time driving your ponies! I think that this is definitely an option for people with illness. What kind of cart did you/do you have?
I’ve started teaching my mare to drive and I will send her off to teach her since I think we forget that driving is another option.
I had two easy entry (Amish made) carts, one for each pony as I didn’t want to mess around with switching out shafts when I used to drive them one right after the other. I never attempted to drive them as a pair as they were vastly different in size, and hated each other. And if I’d tried a tandem, I’m sure it would have ended badly for all of us.
Both ponies are long gone, as are all my harnesses and carts. Crackers, the Hackney pony, died in 2010 at age 29 (euthanized because of recurrent sinus infections that were probably due to a tumor). I retired Crackers at age 27 due to age related issues. Salt, the grade pony, died in 2018, peacefully in his pasture. I’m sure it was due to his advanced age. I never knew for sure how old Salt was, but he was estimated to be in his mid teens when I got him. I think he was a little older than that, and was probably well into his 30s when he died. He’d been retired since 2016 due to cataracts. Salt was the last of my horses, being the youngest when we got them, and when it was evident he didn’t like living alone, I boarded him. It was perfect timing as DH wanted to sell our horse property. DH was tired of all the work and was starting to feel his age. We moved from Colorado to South Carolina, and brought Salt with us. He died there a couple of years after the move. We have since moved back to Colorado.
I tried doing some driving lessons a while back when my partner in crime, @M_al, wanted to learn to drive. We figured it would give me some horse time in a safe® environment, and it was a fun thing to do together. We definitely had fun with it. But I stopped for two reasons: first, I’d deteriorated too much physically; second, what I missed the most was the day-to-day relationship with the horse. Even after my ponies (and our full size horse, who was DH’s) were retired, I got a lot of joy out of just hanging out with them. I’d considered leasing last year, but felt that I just was not in good enough shape to do that. I’m sure DH was relieved when I decided not to lease. He was supportive but he could see how much effort it was for me to just get to lessons. It’s a good thing I didn’t pursue it as the last year has been very difficult medically, and a lease probably would have just been a waste of money because I doubt if I could have driven most of the year. I’m doing better now, but I think driving is still beyond my physical capabilities. I miss it a lot, but I have to be realistic.
The deteriorating process is really, really hard. I’m still fit enough that I can go on a short trail ride and putz around safely, but even on Humira, I’ve lost so much mobility since I was diagnosed. The AS has also started affecting a few joints in my fingers, which my rheumy said is not uncommon. That said, gripping things is hard.
I love having my horse just as a safe pet, so I understand not wanting to just take lessons. I have friends who don’t understand why I don’t do more with her or why I don’t drive for lessons, but like you said, it’s incredibly hard. I care for my mom who helps me out, too, and I’m amazed she was able to ride when my siblings and I were little.
I was on Humira for 13 years (2003 to 2016), and it was magical until it stopped working. My current biologic is quitting on me now (Kevzara), and I’m waiting for approval to go to the next med. I’m almost out of options. But I have to do something as I started getting my first hand deformities. My fingers are trying to point in different directions. I did well going so many years without joint damage, given that I was diagnosed in January 1998. But now it’s happening.
It sucks so much watching our physical abilities melt away.
Sounds like if there’s a will there’s a way! Horse people don’t give up! 
I have no strength in my legs plus drop foot. IE. I am unable to get in the back of a pick up. If I but my foot up on the back bumper, I can’t pull myself up and over tail gate. My boss takes us out to lunch and he has a high truck. I basically lay on seat and pull body up. 
If I don’t have a high enough block, I can’t put my foot in stirrup and put weight to get on. My muscles are just not working. I never knew people could walk on their heels. I try and my feet don’t move.
My hubby built me a big mounting block so I can just step over her to sit.
I am going through all the ideas and exercises that you all have suggested to see which ones I’m able to do.
Thanks again!!
Yes the anti immune diseases are not forgiving. On top of my CIDP, I was diagnosed w/ Lupus. So far that is mild. Ugh…
I do get IVIG monthly and have started to wiggle toes. Not much to the average person, but to me it is so exciting!
The doctor says no problem horse riding, and I have accepted my days of tweaking, working, or getting the horse back under saddle are long gone. I was very lucky to have this rescue so close and finding the perfect babysitter mare for me.
I thought about Western saddle but the idea of having that lack of leg against the horse scares me. At least now I can feel like I’m squeezing. I am nervous I might be “locked in” so to speak.
Just crazy how these AI affect everything.
I think I’ve been on Humira for three or four years and it felt like a wonder drug at first. I’ve just been noticing I’m getting stiffer, so I’m not sure if it’s the progression of the illness or the Humira not working. I’m so sorry about your hands. I’ve known several people with RA and it’s so painful to watch how RA affects the hands. Do you have other options for biologics?
I think it’s awesome that you can wiggle your toes! And I have the same issues with mounting since both of my AC joints in my shoulders are bone-on-bone and I don’t have the mobility to lift my leg into the stirrup anymore. So, I feel you.
I really love my Engel soft saddle because I feel my mare underneath me. I only have neuropathy in my spine and on the bottom of my left foot, but I can empathize with you. I personally don’t like western saddles because I think they’re uncomfortable and I can’t get my leg over the cantle anymore. Can you visit a tack store to go sit in some saddles? I really like Colin Dangaard’s bareback pads, but I haven’t purchased one. I can send you the link if you would like.
And, yes, autoimmune diseases are an absolute pain the you know what.
What a great thread! @dandme, may I ask where you’re located? Another option for you might be to find a vaulting barn … depending on where you are, they might be willing to work with you on your own horse (drafts and draft crosses are super common in the vaulting world, so they would definitely have appropriate pad/surcingle and might be willing to do training to make sure your horse is safe, balanced and ready if anything more than trot is happening).
Anyhoo, you wouldn’t worry about pulling on the horse, as you would hold the handle set as needed and do other exercises as you’re able. At whatever gait you’re able to be comfortable at, from walk to canter. Your legs are DEFINITELY in contact with the horse, as that’s one of the first/main exercises. Since there are no stirrups at all, the proper “basic seat” exercise actually is toes down, drop your leg from your hip and wrap the horse with your legs. (Much easier on a saddle, where the twist removes some of the WIDENESS of a bareback draft plus pad!) Arms are held out to the side with hands at eye level and just visible in peripheral vision. (Now do this at walk, trot and canter both directions while staying balanced and moving with the horse and not rolling up onto your pubic bone.)
There are also “modified” compulsory exercises which do not require both hands off the handles at the same time. Anyway, vaulting is AMAZING for your riding, as it builds strength and balance while being an absolute blast!
Re: getting on - you would either use your tall mounting block at standstill or get a leg up from a coach/vaulter who is an absolute beast in strength and if you can hold your leg bent, they can pick you up from the knee and boost you over the horse and on. That may not be possible so a mounting block is always an option!
Might be another way to get going with your horse to improve your balance and riding while you do other things as well?
I found out yesterday the prior authorization for Enbrel was approved. Now if I could just get my mail order pharmacy to tell me reliably who their specialty pharmacy is. I spent an hour on the phone yesterday trying to chase this down, and got what’s supposed to be the answer, but I don’t have a lot of confidence in it. The person I was talking to didn’t seem to know what she was talking about, and it was a different answer from what is on the mail order pharmacy’s web site, which is a broken link. I left the info with my rheumatologist’s office to have them try to send a prescription; we’ll see what happens.
I thought I would not be successful on Enbrel since I flunked Humira. But my rheumatologist thinks Enbrel might work given that Humira quit after I had to be off of it for a month due to a persistent infection, versus Humira just stopping working.
If Enbrel doesn’t work, I’m getting low on options. I would probably have to try Rituxan, which I’ve been resisting since it really dumps the immune system, far more than biologics that go after a different component. I’ve tried all the non biologic DMARDs, and none of those worked. I probably can’t try Rinvoq or Xeljanz since I’ve had a blood clot, and they are known to be a risk factor for clots. And I had a spectacular allergic reaction to Remicade, way back in 2002.
FWIW, I’ve been on Rituxan since September 2024 (for dermatomyositis) and just had another infusion a week ago. So far, I haven’t had any real side effects, especially compared to some of the horrible side effects I’ve had to other immune suppressants
Thanks, that’s really good to know.
Have you tried Orencia? I do hope that Enbrel works for you. I’m supposed to potentially try Enbrel, too.
We should start a thread on here for tack and riding suggestions for people with illnesses, disabilities, and so forth.
