Hi everyone! I am new to the community but I have lived with RRMS since 2/29/200. I was dx a month before my 21st birthday. I have been on a number of different medications but finally went on Tysabri back in 2008-2009 and it has been working for me. I am JCV negative. I have found that constant therapy and exercise helps to minimize my pain.
They say that most MS patients cannot tolerate heat above 80 degrees however, I am an exceptions to this. I do warm water therapy at least twice a week and equine therapy (horseback riding) to help with my balance and gait.
Is there anyone else that can tolerate the heat?
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JeenaRae
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Hi! I was dx in December of 2015. The majority of my issues are in my legs. I also fell like exercise and moving around definitely helps me feel better.
I also must be the exception to tolerating heat. I have always loved the heat and being outside as much as possible. So far I can be in extreme heat without any consequences. I hope that continues but know that it may change for me.
Continue to fight and take each good day as a gift and work through the tough ones
Hi JenneRae, I have always been a sun worshiper, I tan very well and always feel better feeling the heat of the sun on my face or back. I went to Menorca in May, highest it got was 25, and I was okay but I returned to England and the ms did not like the heat. Some days it'd been 31 and the ms kicks into gear. My balance is worse, I get so tired, it's awful. Just another pleasure ms has robbed me of. Keep enjoying the heat and have some for me. Cheers Jimeka
Welcome, JeenaRae. I was diagnosed at age 57, and I cannot tolerate high heat, such as most hot tubs, or very hot days, especially if it is humid out. I have found that I do much better since we moved to AZ (hot and dry) from South Florida (hot and humid). I have done PT in warm, heated pools (with water temps in the 90s) and it helps tremendously; in fact, that is my best way back from relapses. I also horseback ride as often as I can; I am fortunate enough to have my own horse and have been riding since I was a child; long before I was diagnosed with MS, I used to show and do sport and hunter jumping. I do not know if you are an experienced rider or not, but if you are not, you will soon learn, as you get more experience and learn to ride correctly, that it is the best exercise in the world, especially for MS. It strengthens your core, your arms and legs, your back, and your neck. And it is a fun and especially peaceful exercise! Enjoy!
I'm not an experienced rider but I do love getting on the horse when I can. You're correct, it's great exercise for your, core, arms, legs, etc... My OT gives me quite the workout when I go and then the walk around laps are peaceful at the end.
I don't really like doing it when the weather is below 50 degrees even in GA, so btw the pool and the horse I do what I can to stay active!
It's great to hear you have your own horse! I wish you well and continued health 😀
Hello JeenaRae I am Fancy1959 and I would like to welcome you to this amazing chat room. I was diagnosed when I was 53 but the neurologist estimated that I was fighting MS for some 10 to 12 years before that. I have been on several therapies in the last 4 years. I am positive for the JC Virus so using Tysabri as my therapy latterly freaked my husband out. I only stayed on it for about 7 months even though I saw some improvement in my symptoms. Long story short, I switched to Tecfidera as soon as it became approved and now, about 18 months later I find myself back on Tysabri as the Tecfidera wasn't able to prevent my slide from PPMS to SPMS.
JeenaRae, I don't handle temperature extremes well at all. If the thermometer gets into the 80's I start limiting my time outside especially if I'm trying to do a little manual labor. I don't get near hot tubs or sunbathe anymore. Oh well, it wasn't good for me anyway! If I get out in the heat, I turn into a limp noodle.
I was blessed to grow up with horses. They have been a passion of mine for almost 5 decades. Hippo Therapy, (horse back riding) helps with core strength, balance, increase in leg strength, and increase in flexibility of the ankles, knees, and hips. While on the back of a horse I become at peace with the world and whatever difficulties I am faced with, both physically and mentally.
I would like to invite you to join the family that is evolving around this website. I would also like you to join our ranks as MS Warriors that never give in and never give up! Together we are stronger! Fight on MS Warrior, fight on!
Thank you! And yes I am joining the MS warrior fight to never give in or give up.
I realized that I have a story to tell as we all do and giving up is not in my nature. If it were I would have done it 16 plus yrs ago when I got the confirmation call.
I want those who were dx as young or younger than than me to know that life can still go on and flourish
Amen. Young or old, (careful who you call older, lol) there are always stories to tell and lives to be lived! It's up to each individual to see that their lives flourish. When they don't flourish MS is the excuse, not the reason! Fight on MS Warrior, fight on!
I can take the heat but not the humidity. I moved to Arizona in 1990 (the year that I was diagnosed) and love it there! Of course, in the summer, I never go anywhere without a good supply of water! It's an unusual feeling to be able to function in temperatures over 100 and not sweat a drop!
Unfortunately, I've been in Massachusetts for the last two years taking care of my mom... the humidity is driving me nuts! And now the winter's coming and I can't stand the ice and snow!
You are very fortunate to have access to horses! Enjoy riding and I hope life keeps improving.
I sweat like no tomorrow in the heat but I love it and it doesn't drain or fatigue me. The winter however makes me feel like someone strapped metal to the back of my legs and then told me to walk.
I hope everything is ok with your mom? I know what it's like to step in and take care of family.
Wishing the best for you all and continued improvement for you!
My dad died about 3 years ago and my mom has been having a tough time since. She's got a number of health issues, including really bad arthritis, diabetes, a-fib, pacemaker, congestive heart failure and problems walking (even with a walker).
I came back to MA mainly to help with cooking, cleaning, shopping, getting her to doctors' appointments, etc. but my 'duties' seem to be constantly increasing! It seems hard to find some 'me' time and, when I do, I feel guilty and worried that she's okay.
Are your aquatic and hippo therapies covered by insurance? How do you get into something like that? I LOVE the water - AND HORSES! - and am wondering if I could benefit from those therapies or if they'd even be available to me. This MSAA Community is the only 'therapy' I've had since I came here two years ago.
Yes they both are covered by insurance luckily. I had my neuro write a script for equine therapy and one for aquatic therapy. You can ask your insurance company to ensure that equine is covered, sometimes they have to work with you on the code because it is OT not PT. I hope this helps!
Welcome as well to our My MSAA Community, JeenaRae ! Glad to see that aquatic and hippo therapies work well for you. MSAA has a full online Swim for MS Aquatic Center with some excellent resources (at least we think so) to help when in the water - learn more at:
Also, for all of you horse lovers out there like Sukie427 and Fancy1959 - check out MSAA's annual Lone Star Roundup charity event that takes place in Grandview, TX: mymsaa.org/cattledrive
Too late to register for this year's event (it's this weekend), but we'll be sure to post pictures on Facebook (facebook.com/msassociation) and our MS Conversations blog (blog.mymsaa.org) after the event!
Thank - you for the invite to the Lone Star Charity Roundup in Grandview Texas JohnMSAA. Unfortunately that is over a 14 hour straight drive through. It sounds like a lot of fun, but the distance is prohibitive for me. Thanks for thinking of Sukie427 and myself. Together we are stronger!
Hello, John. Thanks for the info about the Lone Star Roundup charity. What is it? Is it open to anyone to participate? I don't know how far Grandview, TX is from where I live in AZ, but have horse trailer, will travel! Sukie427
Sukie, What part of AZ are you in? Are you in touch with the MS Society there? Maybe you could team up with other MS/horseback riders and go to some of the events. The MS Society might be able to put you in touch, or maybe even arrange some events. I can't think of anything more fun than horseback riding!
No problem! It is a peer-to-peer event organized by the Beaumont Ranch in Grandview, TX where all types of riders are welcome - from experienced ones to "city slickers" who may want to try horseback riding for the very first time. Unfortunately, this year's event is closed for registration, as it is this weekend. But you can support our faithful riders and learn more about them here!
Hello, heat to me is like garlic to a vampire. That's good you like and can tolerate the heat. At least your vitamin D level shouldn't be that low. Good luck and stay active.
Oh yea, how do horse back riding aid you in your training? I heard this before.
Horseback riding can assist with you gait, balance , core strength etc.... It's kind of a full body workout for MS patients and horses are also very calming and peaceful. They are service animals so they can assist with mental health as well.
JeenaRae, you hit the nail on the head! Horses and horse back riding has been a passion of mine for almost fifty years. I ran a thoroughbred farm for a number of years. I taught my children to ride when the were about 4, with Brownie, our Shetland pony with a heart of gold. We spent a glorious 15 years riding and camping as a family in Kentucky, Indiana, Tennessee, Illinois, and Missouri.
Horse back riding provides innumerable benefits for most people with disabilities, not just MS patients. Horse back riding increases total leg strength and mobility. It helps to stretch your thigh, calf, and ankle muscles and tendons. At the same time it helps with the flexion and relaxation of your hips, knees, and ankles.
It also help's with strengthening your core muscles. All of which helps to increase your stride and general balance. And I totally agree If you are blessed to find the right horse, one that you connect to and one that take of you and connects to you, your time spent riding does provide a therapy for your battered MS soul. You can become free of the tethers and restrictions that MS has placed on you. It allows you to realize that life with MS still has much to offer. Even if it is only on the back of a horse your MS does not restrict your ability to keep or to mobile without mechanical or human assistance. And oh what a wonderful feeling it is!
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