The reason for my outbursts of relatively gloomy posts is because I just can’t seem to get a handle on what’s happening to this MS body. I just want some sort of reprieve. Now, I say this fully aware that things could always be worse. I am learning from your comments and my readings that the essence of who I am is still here. It’s perhaps why I continue to blog through this onslaught of “new normals”.
I just don’t know of any of my MS friends who are continuing to encounter decline. Or do I? Please let me know because I’m feeling alone on this one.
One good thing is that I recently started horseback riding. I began the process of registering a while back. There was quite a bit of paper work involved. I refer to it as legal mumbo jumbo. But once I got past that I was on my way to the horse farm.
Basically, the type of hippo-therapy I am doing mimics the action of actual walking. It works my core tremendously and also the muscles used for walking. I’ve been riding for three weeks. I go once a week for 45 minutes. I had to work up to 45 minutes of course, at first lasting for only 20 minutes. Since starting I find getting up out of the bed easier, so I think I may be experiencing the benefits already.
Though, I may be on this slippery slope, it’s so important who I surround myself with. I try to associate with supportive folks that love and help me in all my endeavors. I mean riding horses with spastic legs, minimal core strength and slight cognitive impairment is pretty risky business.
But listen, if you tell me this may move me closer to walking with even a walker then…SADDLE ME UP!
By the way they call it therapeutic horseback riding and it may be covered by your insurance if you get a prescription from your doctor. So far I recommend it. I guess Ann Romney was on to something.
A big emphatic “yes” to therapeutic riding! It has worked wonders for me. It has helped restore my sense of balance and almost eliminated my need for a walker altogether.
I’ve also become a pretty decent rider after 12 years and love what I’ve learned…
Deb, Wow! That’s incredible!
Deb, Thanks for the awesome feedback!
Aside from my dear neurologist, horses are the only creature that understands my struggles woth MS.
I participated in a university therapeutic program for more 11 years. It enabled me to find my “center” even having a numb left side. I’ve been priviledged to ride on two “retired” national champion hunter-jumper and dressage horses. I know it is totally unreasonable for me to have a horse of my own that I would have to take care of on a daily basis; but I have just leased a post-rescue saddlebred in which therapy can benefit both of us. My time with “Cookie” is the best 2 hours of my week.
From a physical standpoint, riding has helped me get around without a walker most of the time. Riding has enabled me find find my “center” and gain a better sense of balance, even with a numb and dumb left side. That has been a huge plus. However, spending time with “my” horses has given me a tremedous amount of spiritual and emotional recovery. It’s amazing how a simple trail ride can help restore peace and a sense of well-being.
Now, after 12 years of riding, I am an independent rider. I tack and groom. I walk-trot-cantor and I won a blue ribbon for first level general equitation in a horse show last year.
I’ve been a proponent of natural horsemanship (–or “Horse Whispering”) for about five years now; and what an incredible experience to have a creature who responds to my signals closer without a single word.
I highly recommend therapeutic riding in a certified riding center for those who are willing to try a unconvential avenue. They might be surprised in the results –and even become attached as I am to Cookie and the other big, beautiful babies I’ve had the pleasure to ride…
Deb, Now I really can’t wait until my next session.
My wife is an OT and a big proponent of horseback riding as a therapy.
Personally, I have never tried it, but so glad it is helping you!
(Once, I went to the “ranch” with my wife…my nose is so large, the staff tried to put a saddle on my back!)
Sock, You are so silly!!!!
Hi Nicole,
Another great article and it’s your honesty and transparency that helps me to relate to your feelings and experiences as a “real” person who has MS and keeps me coming back each week to read every word you write. Hell healthy people without hope live a more gloomy life than we do somtimes, so a frank discussion of the life of an MSer is not something too gloomy for me to read. I’ve learned, and been exposed to more practical living issues for those with MS on your site than any other single source. I am starting to meet more people who also have MS but I’ve not found another outlet to read as much about real life experiences of others with MS than I find here. So please keep writing the way you do, and keep on riding as long as you can! Core strength is the key to freedom and now I’m going to enjoy exploring horse back riding! See, another new idea…priceless!
Tim
Tim, I can’t adequately express how genuinely grateful I am for your continued support. When I started this blog, I had no idea the impact it would make. I just wanted to write about my side of the story. Now that includes riding horses…who knew?
Speaking as a committee of one, I applaud your reaching for something new to help to regain your mobility is quite impressive. I would try something like that but I am just to busy. I get around pretty good most of the time, though I do have that notorious drunken gait. I always have the shopping cart in the store and keep a cane in each vehicle. The cane gets its use every time I go to the VA hospital for an appointment, there are miles to cover to get to the various clinics. I get my workout pretty regularly, but it is getting harder to get around, next step is to try the forearm crutches. Problem is I am losing strength in my arms so I don’t know if I can handle them. I really don’t want to go to wheels, but i guess I’ll be there sooner or later. My new normals…
Bryan, I apologize for taking so long to respond. Well, thanks for reading and The solitary applause! I tried the hand crutches. it was nice while it lasted! Sounds like you are in the midst of transition with a very good mindset. Sometimes how we perceive change is more devastating than the actual new normal. But once again from my end you are handling it respectively.
So glad to hear you are doing the horse riding therapy! I give you much credit for even getting up there! I’m sure it’s not a pretty sight getting on one. We had horses, but I never rode them; just wasn’t into them that way. As far as your gloomy posts, you have MS…you are allowed to have gloomy days. I do think that by your admitting to the fact that your days are not always unicorns and fairy dust, you become more human to us! Keep blogging the truth nicole!
Kim M, Its strange because I’m literally afraid of just about all animals. It never dawned on me to be afraid of “Patches” the horse I ride.
Thanks for understanding about the gloomy days. But your right if I didn’t show those I wouldn’t come across as believable.
Hi Nicole, I have been reading but not commenting very much as I have found myself once again putting myself somewhat on the back burner by helping my adult children. I’m very proud of the way you are living your life. Reading your blog is a big help. it help me realize things could be so much worse. I feel like I have a good family but I believe you have to have ms to realize what it’s like. I was once told God is trying to draw me closer when I had a fall. Didn’t mean to get off subject I’m glad to see you will not give up trying to walk again. Im using a cane and I was told keep praying to have that cane taken away.LoL I treasure my cane because for a few months I had to use a rollator. I found the rollator ok because it added more stability to my walking. Take a few laps on the horse for me…..Happy For You
Angela, Thanks for reading. I think I have to remind myself daily that things could be so much worse. I’m just trying to remain as active as I can. It makes me feel good to know I’m doing my part in this.
Nicole, I am so happy to find this site. Your honesty and perspective is refreshing. I cannot afford horseback lessons but am fortunate to be in a Reflexology study where I get free treatments 3x per week. The results are blowing my mind. I am low on energy this evening otherwise I would go into more detail. Happy trails!
Della, I should have mentioned, riding only cost me 25$ for 45minutes. But free sounds even better.
Was going to be catty and smarmy by saying I am living below the poverty line and do not even have enough money to go to the doctor or get medicine. But actually I am glad you are able to go horseback riding. Enjoy your ability to do so, not everyone is that fortunate.
Laura,
Wow this post came across poorly. I apologize for that. I just told someone riding costs me 25 bucks for 45 minutes. I can see now though that it is a luxury.
More power to you, you have the means and ways of going horseback riding. Unfortunately, because I am having to live below the poverty line, I do not have access to health care, prescriptions, or even proper nutrition.
I am in constant pain. I cannot sleep because of the pain, I cannot work because of the pain. I am depressed because of the pain. It is a constant vicious cycle. I am finding life sucks at this time and place!
Laura, riding is 25$ for 45 minutes. I can see though how that can come across as a luxury. You are fighting for basic needs. I do apologize if I have offended you.
I’ve been considering the horse therapy, but am not sure my insurance would cover it. I also wonder if there’s anywhere I’d be taken seriously for it. I’m still at the Relapsing Remitting stage, so I’m usually being told it’s not yet for me.
Re: the decline, I’m seeing it too. At this time last year, I was able to walk unassisted. I’d get some fatigue issues and had a slight limp, but I was still ok unassisted. I don’t dare leave the house without a cane now. I’m still taking the interferons, so I’m wondering if they’re even doing anything for me and considering going without.
Jenn, My doctor had to be absolutely positive that it was going to be safe for me. FYI you may be still able to do normal riding for beginners. Also, I’m not going through my insurance. Its just 25$ for 45 minutes.
I shouldn’t have asked about decline. I guess its true what they say about misery.
Enjoy your new found form of exercise. It makes sense using your core for an all around work out. What a pleasant way to exercise. I am happy for you.
Girl, you get around. Superbowl, actors and sporting events. How do you get into all these great situations? How did the horse backing come about? You interest me and I would like to know.
I fight isolation so I am very intrigued by your lifestyle.
Lisa, Yes, I plan to keep riding as long as I can!
I do get around a lot. I have my husband to thank for that. He finds out what’s going on and sees to it that we get there!
Hi, Nicole. You are not alone inexperiencing decline! I was diagnosed with PPMS in 2007 at age 60. I have been in continual decline. I have been experiencing recurring bladder infections over the past year and a half. Last year I had 17 bladder infections and this year already five. Each infection leaves me weaker and less mobile. The effects are cumulative. At this point I can barely walk with a walker or stand for longer than a minute or two. This completely sucks. I feel like I am progressing at warp speed. Like you, my husband helps with nearly everything. I love reading your blog. It makes me feel like I’m not alone. Thanks for sharing. – – Sandy
Sandy, Thank YOU for sharing. I find it surprising to hear you were diagnosed at 60. You surely had symptoms well before that. And I know about the bladder infections. I recently just stopped catheterizing myself because of them. I’m getting the picture too that I am not alone in this. Thanks again for sharing.
Hi Nicole,
So glad the horseback is beneficial.
Horses are so gentle and beautiful.
I am hoping the whole experience is wonderful for you!
Your blogs always make me feel included and it is a safe place for me to always go to.
Enjoy the ride……
Liz
Liz m., Thanks. I’m glad you found this site too!
Great Blog you have here Nicole.. Please help me to provide information for the MS community by giving me Hippo-Therapy items to share.
Best,
Stuart
Stuart, Thanks. I’m glad you like the blog and will continue to visit on Tuesdays when we release new posts.
Nicole I love your blog!!! It helps me deal with what you must go through everyday!!! It lets me know I’m not alone in this!!! I was diagnosed w primary progressive ms about a yr ago and have found much relief through swimming!!
Lisa, Thanks for visiting the site . Please know that we release new posts on Tuesdays! I too use to love swimming!
Hi Nicolle,
Yay for you! Riding does work your core, so that’s terrific. It’s also terrific that you are around horses. and have the courage to be there. So….something new to do in the long winter months before swimming resumes…..I love horses and have ridden extensively as a kid. Not now, but still enjoy being around them. They have much to teach. You know the old adage “there is something about the outside of a horse that’s good for the inside of a man (err-woman)”. All the best to you!
Toni, Sounds like you are more familiar with horses than I am! I’m doing this instead of swimming now.
Congratulations! What a will to live well you have. In my opinion, it is the giving up that is the most dangerous thing we face. As for myself, giving up improving my situation will be the last thing I let go of just before my last breath, and even then I’ll be thinking, well, how do I make this next experience a fulfilling one, if I have any say over it. As for decline, I am sure it is of small consolation to you, but all of us MSers are in decline, even when there is no apparent exterior manifestation of it. My attitude about that is to do everything I can that is in my control to counteract that process, and that includes diet, exercise, mental health, and, goodness, after your report I may just have to take up horse riding!
Judy, First I wanted to tell you that I do still visit your blog but I can never get pass the letter number thing.
Now, yet again you are right. I embarrasses but maybe it’s true, Misery enjoys company. What an incredibly horrible thing to say.
I need to go back to my shrink!
My daughter does therapeutic horseback riding as well. She loves it, and it’s done wonders for her both physically and in terms of building her confidence. It is be far her favorite part of the week.
As for the onslaught of MS, I feel your pain. yesterday, my knee hurt like heck, but I didn’t have to limp and was even able to run by lunch. There was nothing structural, just pain. This morning, it’s my hand. I would cut it off at the elbow if I thought the pain would stop (phantom pain is great reason to ignore such thoughts). It being my right hand with me being a right handed guy is also a draw back.
I just hate that for a second day in a row, my day starts with vicoden. I try very hard not to take pain meds, but good grief!
It’s not just me seeing my slippage either. Over the weekend talking with my wife, she said she expects my MS symptoms will progress mostly in cognitive sphere as I tend to have a lot of reserves on the physical front. (back handed way of saying I’m not as bright as I physically lucky? lol) She even said her concern long term for me is suicide. I’m not there yet, but I have long said I am not anti-suicide when my time comes.
Well lived, I must say your last statement shocked the hell out of me!
But I take it you or your wife, also have noticed a decline and that’s what I was asking.
As for the riding, I’m glad your daughter has tried it and that leads me to wonder about you? Would you try it too?
Oops. The dark side slipped out for a moment eh? It does that from time to time and more often when I have a few days in a row of increased pain, like the last few.
Still, I believe a good life isn’t one without hardships. How else are we to recognize how good we have it when things go well? Just take one of my favorite physical sensations, the pee after being forced to hold it so long just getting the pants down fast enough was in doubt. Half of the great feeling is not feeling the urgent need from just a moment ago.
Sorry for the downer of speaking of the unspeakable for many, suicide. I tend to be a bit blunt, and more so when uncomfortable.
well lived, Please don’t apologize for your feelings. The beginning of that post I wrote was gloomy! We are allowed that luxury we have multiple sclerosis! Actually, it made you come across as human.
Thank you for the share. I think I am going to look into the riding idea. Also please know that you are not alone. Since last fall I have had a noticeable decline in my cognitive abilities as well as overall strength and energy. I am blessed to still be walking but reached a point over the holidays where I had to pass on some of my responsibilities in the home. That was very hard for me. It involves trusting the hands now managing the task and accepting the new reality. Not easy! However with that said I am finding not being faced with a daily reminder of my “inadequacy” is much healthier. I guess it is all about change. And I believe change is good. Challenging but good! Thanks loads for sharing.
Marie C, Yes change is going to happen. I find sometimes the only thing WE can adjust is our perception of that change. Very difficult I know. It sounds like you are on the right track. Because change is life.
Hi Nicole
Once again, you really help me.
The thought of horseback riding crossed my mind once recently. Now that you explained how it can be used therapeutically I just might look more into it. I need it now more than any. I am a little down now and this will lift my spirits and keep me motivated about doing something different.
I have one close sister-friend who has had MS for many years but hardly ever complains about anything pertaining to it. She says she does not want to claim it. She walks with a walker and lost her sight due to diabetes. Sometimes I wonder why my symptoms are so much worse (being diagnosed in 2009). Then I remember not to compare because MS affects each one of us differently. When I look in the mirror I see a reflection of who I am not what I have.
I am so glad you found something that is beneficial for you. Three weeks? That is something to be proud of. Keep it up as long as it is helping.
Take good care!
Arletha, I think society pushes us toward comparing ourselves. I know this. But it’s still hard not to do, especially when the grass always look greener on the other side!
Yes horseback riding has been great. I would be going today except its a local holiday around here, Fat Tuesday!
Nicole, I love your honesty and determination. It’s inspiring to read, I am addicted to reading My New Normals, fabulous! Thank you!! OMG, today I have woken up like a bag of bricks. I am so annoyed, as have serious schedule on and already have had to postpone what I can already. I’m in bed reading you on Ipad and summoning up humor and strength. You are not alone, we are all fighting this. OMG yes this SuckX With a Capitol X. Cyber Hugs to you, Mandi
Mandi, Thanks for faithfully reading. I’m sorry you feel lousy but proud you were also wise enough to postpone. We are not alone.