My name is Susan and I have been enjoying reading everyone's posts for a few weeks now. I feel like I have already gotten to know so many of you, I thought it was time to introduce myself and get in on the fun!
I was diagnosed in 1992 at age 27 with relapsing remitting ms, but two years ago things really started progressing and I now have problems with balance and walking, among other things. Worst of all, I have developed a fear of horseback riding because of my balance and weakness issues, and riding is my favorite thing in the whole world, not to mention my exercise of choice!
I left Connecticut ten years ago because of the humidity and an alcoholic ex-husband, and moved to northern New Mexico. The "high desert" climate has been much better for my MS symptoms, and the Lord blessed me with a new husband who is so wonderful it's hard to even put into words! What a difference it makes when you have a partner who really cares and actually helps when you are having difficulties due to MS!
I do have my difficulties, though, and sometimes you just need to talk to people who understand MS and all the stuff that comes with it. I was looking for a support group in my area, but Taos, NM is so small, there just isn't much around here (I currently have to travel three hours to Albuquerque to see a neurologist at UNM!). Anyway, I am very grateful to have found this wonderful place, and thanks to all of you who participate!
Welcome Taosgirl(Susan)! My name's Dave. I was diagnosed with chronic progressive MS in 1987 when I was 29. That was seven years after I married my High School sweetheart, Kathy, who is still my best friend helping me every day. We lived and worked in Indian for twenty years the moved to Pittsburgh, PA where we live now. I cannot drive anymore so Kathy takes me to see my neurologist which is only a 20-30 minute drive depending on the traffic.
Hi Susan, another horse fan. I too love them, but unfortunately due to a bad fall off one I can no longer ride, so I understand how you feel. I was dx with PPMS 6.5 years ago, don't take any meds as there is nothing currently available. It's amazing the relationship you can develop with a horse. I have had horses all of my life, my first one was an Arab Welsh mountain cross, I live in the uk, my mum used to breed horses. My horse Flicka lived to be 2 weeks short of 40. She was one of a kind. My next horse unfortunately broke her bone just above her hoof and as she was an Irish draught she would never have healed due to her weight, so she had to be put to sleep. It was heart breaking. That was 6.5 years ago as well, her name was Lady. Anyway welcome to the family, I hope you feel as at home as we all do. Blessings Jimeka
I took a spill last summer while riding my mare, Honey. I was feeling good that day and decided to just do a short canter back to the corral. Honey even turned to look at me as if to say "are you sure?" I gave her the go ahead and two strides in I lost my balance, lost a stirrup, and suddenly was airborne! I hit the ground pretty hard, but thankfully didn't hit my head. I did end up with a sprained ankle and a new fear of falling off a horse. That was the first and I pray last time I will fall while horseback riding. New rules are always wear a helmet, just walking until I can get some balance and core strength back, and never, ever ride without my husband there with me! I'm sorry to hear about Lady, and your heartbreaking story, Jimeka. It is truly amazing how deep our relationships are with our horses. If I could never ride again(God forbid!) I would still keep my horses forever!
I was on a horse we had loaned for my daughter. My sister was schooling her so that my daughter could ride her safely. My sister and I decided to go on a hack. We never wore riding hats but for some strange reason my sister insisted I wear one, as it was my first time in her back. Well she was a gorgeous ride so I felt comfortable. My sister said that Danny the horse did not like to canter. Well she went into one right away and she was so excited she bucked first one side and then the other. Even after pulling myself back in the saddle it all happened too quick and I was in the floor. Landed on my head somehow. Anyway to cut a long story short, my T7/T8 disc serrated my spinal cord. They found out through a full spinal and brain MRI but at the same time my head was like a furred up kettle and I had lesions in my neck and spine. So I haven't ridden since. Such is life. Anyway you enjoy, keep sharing your pictures, blessings Jimeka
Susan, thanks for the very warm and heartfelt introduction. For many of us, the connection with large animals remains a very deep one, and a "territory to dear to surrender" in the ongoing MS war. As one similarly situated, I applaud your commitment not to release the reins just yet (but to approach things with some reasonable precautions and safeguards).
Sounds like you've also made some great choices here recently (better husband, and better climate). Congratulations again on each of these, too.
It is nice to meet you, Hidden . It sounds as though you are happy despite setbacks, heartbreak, and MS. Your husband is a keeper. Like you, I am blessed to have my husband, my best friend, by my side... no matter what comes.
We all need to vent, share, and find friends who are willing to listen and truly understand. Welcome to the family, Susan!
Hi Susan. Nice to meet you. I have always had a love for horses as well, but never had one of my own. Growing up and through my early adulthood, I had friends with horses or would occasionally go to riding stables. But, now It's probably been 20 years since I've ridden. I don't know if I could even ride now due to balance. Maybe your balance issues will improve and you can ride again soon. symptoms can improve too - I have to remind myself often. I know you are missing that part of your life in a huge way. It's sad that we have to give up chunks of our lives to this ms (for me it was loss of a fabulous career, to now, just hoping I can get my basic household chores done). My faith in God keeps me strong, replenishes my hope and reels me back in at times
I'm so glad you have a great supportive husband now and have moved to a better climate. The climate part is fascinating to me as I live in a very hot, HUMID, area during the late spring through summer & fall. It makes my ms symptoms very difficult and I try to avoid being outside most of the summer. I've thought of moving to a better climate many times, but my family is here near me, so I stay. I have a husband who is supportive but he does distance himself a little bit to my struggles. It's really hard on him too!
Welcome to this support group. I'm fairly new to it and not as active in it as I should. But, the people here are great and I think it's the best group!! 😊❤
I think it's the best group, too, @Roxy444! I always rode other people's horses my whole life, but finally at the age of 48 I decided it was now or never! Part of my decision was because of the excellent therapy for MS. In the past, my neuro noticed marked improvement in my balance and strength when I was consistently riding.
It was that same doctor who agreed that a move to the southwest sounded like something to strongly consider. I do have some family here - my brother came out first. It was when I came out to visit I noticed that I felt a lot better. Summer humidity was brutal on me and I became a prisoner in my air conditioned apartment! Even in the winter when it's not hot, it was still always damp and humid. So I made the decision to leave an abusive marriage and take care of myself. My mother ended up moving out the next year!
So I do have some family, and of course, my husband, but I understand how hard it is to leave a place so familiar to you, not to mention family and friends. And believe me, it wasn't an easy decision. It took me five years to get up the courage to actually do it. I was often reminded by my ex that I was disabled, and I would never be able to do it without him. But I always knew God would help me, so I patiently prayed, and sure enough! He helped me! And now I have a horse of my own! So there, stupid ex-husband!!
I've gone off on a tangent, sorry! Anyway, thanks to everyone for welcoming me. You guys are truly awesome!
Oh my gosh, it was not off on a tangent at all! Your story is VERY inspiring! Thank you for sharing! You have incredible courage and have taken negatives and turned them to good 😀 I'm so very glad you no longer have that abusive hub and you took control of your destiny - with God's help. That's awesome. Ms, itself, makes us feel constrained, to say the least, and it's always good to hear the good that can come as well!
I guess the most important thing I learned from my past is BELIEVE in YOURSELF. Don't listen to people who tell you "you can't". I was even told by some friends and family members that I was selfish. I could have been living a happy life so much sooner, but I wasted a lot of years being afraid. It was when I realized I was living in fear that I decided to just do it afraid! And, of course, with a LOT of faith. After all, if I don't take care of myself, who will? 🌞
Taosgirl, this is Fancy1959 and I would like to officially welcome you to this awesome chat room. You have to have a safe place to come ask questions, find out information, or just voice concerns without any fear of death because we do truly understand. This chat room is full of the most caring, kind, and compassionate people you will ever hope to meet. We are glad you're now part of our extended family, welcome aboard!
As you probably noticed reading posts lately we have a couple of horse people in our group and a bunch more potential horse people in the group. Perhaps you do you need to give up your horseback riding but you could try a different style of riding and /or change type of horses you ride. It is very hard to give up a beloved mount. i personally downgraded from a 15.2 hand walking horse, age now 10, that was full of himself but that listen to me and would do anything I asked to the 14 Hands Walking Horse pony Mare that is about 19 years old and extremely broke. I only had her today so she needs to settle in some more, because everything strange and it's but I'm hoping in the next four to six weeks we bond. Talk to me about what's going on in why afraid of riding and we'll try to figure something out. I have ridden for over 50 years now and I have even run a thoroughbred operation/farm for a decade so I have a lot of insight to horses and insight into MS as well.
Late last fall, after only be diagnosed for 4 years i went from RRMS to SPMS. I saw my former neurologist toward the end of January and I asked him for help/other options and he actually informed me that my disease had progressed and I was at a point were I was out of options. To that I say cow poop! I am extremely pig headed and refused to let MS win the battle that is raging inside me. So about I'm fighting back, doing my own PT and I am in the process of getting into a new neurologist!
i look forward to talking to you soon. Please keep us updated on your adventure! I would like you to remember one thing from this conversation. Together we are stronger! And you and I together with others in this chat room, like jimeka and Sue, will find a way to get you doing the things you love best. Hang in there and come join our fight beat this beast!
Hidden so glad you've decided to say hello and join in on the "fun" 😊
What a beautiful horse! I've never been but I understand Taos is really wonderful.
I understand the fears you have regarding balance. For me, sometimes it's the fear more than the impairment that further disables me.
I have a 10yr old niece that is fearless (well really she justs musters up courage and faces her fears) and I often have to channel her energies and remind myself to get beyond my fear. Of course, being cautious and safe and rational in the process.
Welcome Susan, I'm glad you found a partner in life that makes the load a little bit less. I'm Lynn and I travel approximately 100 miles to my Neuro which is that UCSF MS clinic in San Francisco. I consider the distance well worth the time to have the best of care. I've only had MS a short time and not been given a stage as I still have more thorough testing to undergo in March and April. This is a great group, great people, glad to have you join us. keep on coming back.
Welcome to our My MSAA Community online family, Hidden ! We all hope this online platform can act as a support group, sounding board, and knowledge base for you while you look for something local-ish. Though I will say that, while it is small, Taos NM is so beautiful!
If you haven't already, please consider contacting our Helpline where our Client Services Consultants can help you find resources like neuros and other support close to you:
Thanks for the info, johnMSAA ! I called the 800 number, and unfortunately UNM in Albuquerque is the closest option. It is, however, an MS Clinic so at least I will have access to specialists. Thanks to everyone who welcomed me so warmly! And looking forward to talking with you, Fancy1959 , and all the other horse enthusiasts that have equine advice! I already feel better knowing I have friends right here!
Susan welcome. Congrats on the goodness in your life 😁 My sister in law lives in Taos. She suffers from Parkinson's. She is a wonderful person So is her husband Mike They have a church there st James episcopal. I'm wondering if I put the two of you in touch, that maybe Sandy could help you find things in the area. Let me know what you think. Again welcome. This is a great place. I visit everyday. Debi ( dpjinx)
Wow - what a small world, Dpjinx ! My sister in CT has Parkinson's, and they do have a support group for that here in Taos, but nothing I could find for MS!
Susan, we are all so glad you found us! I have found the folks here to be so supportive and encouraging, as well as full of helpful information. I love that I can come here and ask questions or unload some stress or fear with people who truly understand, and without burdening my family or friends.
G'day Taosgirl nice to meet u. I think I might give that horse riding a go, people do seem to love it, and as the saying goes. Nothing ventured nothing gained, anyway nice to meet u.
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