EQUINE POLYSACCHARIDE STORAGE MYOPATHY

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    Polysaccharide Storage Myopathy – PSSM. Equine Polysaccharide Storage Myopathy – EPSM. Whichever name you call it by, it’s a genetic muscle disease I’d never heard of before March 2011. I’d been having “back injury” trouble with my then 6-yr-old Quarter Horse mare for over a year at that point. Every time I’d think she was getting better, she’d start to struggle again. I’d tried everything – chiropractic, massage, time off, investing in a reeeally nice, expensive, well-fitting saddle…all to no avail. Then a discussion amongst invaluable horse friends led to a Google search that led me to discover PSSM. I called my vet right away. He agreed it was possible, but seemed skeptical, and scheduled a muscle biopsy for her. (The genetic test can produce a false negative; the biopsy is conclusive. Now I know I probably should’ve tried the genetic testing first, but I didn’t want to cost her any more time trying to figure it out at the point.) The more I read while waiting, the less I needed the test results to know – it was like reading a diary of my horse. But one week later, I finally had a definitive answer to all her weird issues – my baby has “moderate” PSSM.

    It might sound silly or dramatic to you, but the internet saved my horse’s life. I don’t know that I would’ve ever found a local vet who would’ve suggested this as an answer for her. University of Minnesota has guidelines published for management of PSSM through diet and exercise, but that’s all they are – guidelines. Every individual is different, and this last year has been a journey of trial and error, tweaking and retweaking, and pulling out my hair. I could not have made it this far without the two PSSM support groups on Facebook (support group 1 and support group 2) and more recently the one on Yahoo – Dr. Eleanor Kellon, who specializes in this disease, answers questions on this one. Go ahead and laugh – I know it sounds funny. But it’s absolutely true. These friends-I’ve-never-met have helped me get Harley to where she is comfortable most of the time and have been an incredible source of encouragement and understanding. If I recall correctly, when the second Facebook group was started, it was called “Faces of PSSM – the Pros and Cons” or something to that effect. People said there were no pros, and the creator of the group edited the name.

    Dealing with Harley’s condition is like a crazy roller coaster ride. Sometimes the smallest bit of progress is exhilarating, other times I just feel like I’m going to puke. This past week has been an emotionally difficult one for me. Two of my best friends (the two responsible for helping me discover PSSM, actually) just got amazing new barrel horses. I’m so happy for them both, but I’m sad I won’t be there running with them. I bought my Harley as a barely 2-yr-old barrel prospect, and she would’ve been amazing. She is bred and built to the hilt, super athletic, and amazingly fast. Now, 5 years later, not only will she never run, she’ll probably never even wear a saddle again. I can ride her, but her abdominal muscles can’t tolerate the pressure of a cinch, so we go bareback. I can take her camping in the mountains, do judged trail rides, and practice pretending I’m Stacy Westfall. But everything I do with her requires more. For example, she can’t be stalled or tied overnight because she has to be able to move, so I have to build her a portable fence, and can only go places that will allow me to do that. Her special needs are always first and foremost in everything I do.

    I want to do things I’m not good enough to do bareback. I want to (try to) run barrels. I want to chase cows. (I want to go on a trail ride and not come back feeling like I peed my pants…) Our other horse and I just don’t “click.” I’ve really given it a good try, but I have to force myself to go ride him. Harley has spoiled me – she is a BMW….he is a rusty old Ford Pinto. She is unbelievably smart, willing, brave, incredibly talented and athletic, and has SO much heart. There is nothing that horse won’t try her hardest to do for me. He is beautiful, athletic, and sweet as well….but has no try, no want to, and no confidence in himself or me. Riding him is so much work…it is not the fluid partnership to which I’ve become accustomed. It is not the experience I crave. The option of owning a third horse raises lots of questions and issues at this point, not the least of which is finances. Maintaining a significantly symptomatic PSSM horse (Harley’s case is more severe than many) is not cheap.

    Then there is the incessant emotional torment. Uncomfortable or not, Harley loves to go riding. She is so, so sad when I leave her behind. How do I abandon her for a horse I can saddle when she tries so hard and wants so badly to go with me? I feel so guilty leaving her, but no less guilty taking her. I know that when she is uncomfortable, she will feel better the farther we go. Does she? How badly does she hurt by the time she tells me she needs a break or can’t tolerate something? What’s more humane – to push her to exercise for more comfort later, or to not make her endure that and hope she’s as reasonably comfortable as she seems just hanging out? I think I’m pretty much out of things and combinations of things to try, and that this is as good as she’s going to get. It’s been over a year since her diagnosis, and I’ve begun to accept I’m not going to find a magic powder or even combination of powders that will alleviate all her symptoms. I have a seven year old bareback trail horse….who needs lots of exercise and can’t eat much grass.

    BUT…if I could go back in time and change it all, I would choose her all over again. Not only for fear of where else she could’ve ended up or what might have happened to her, but also for what she has given me. There may not be “pros” of PSSM, but there is a silver lining in everything. Nothing that makes it worth her pain, but shreds of light I have to cling to. God gave me this horse for a reason. She has taught me so very much.

    Because of her, I have learned more about nutrition and the internal workings of the horse as a whole than I ever imagined. Because of that, my entire lifestyle has changed. Through research for her, I have made enormous improvements in my own health and wellbeing. I now buy all organic food and cleaning products (or make my own, even!). I address health concerns in myself and my animals with whole foods and natural supplementation instead of pharmaceuticals whenever possible. My dogs’ and cats’ diets and care have done a 180, too. We all have Harley to thank for getting us on a better health track.

    Riding bareback for the past year has done more for my riding skills than years of lessons. (Though I could really do without the overdeveloped inner thighs…). My horse and I now communicate on a level I’ve never before experienced, and it’s incredible to me. She is so sensitive and so in tune to me, I rarely have to ask her to do what I want her to because somehow she’s already doing it. She may have small feet, but those are some awfully big horseshoes to fill.

    Mostly, I have learned the price of ignorance. In my 20+ years of owning horses, I had never heard of PSSM. Now, the 20/20 rearview mirror shows me so many things I missed. My ignorance as a buyer led me down this road, but the TRUE price of ignorance (referring to not knowing OR not caring/being willing to sacrifice) is being paid by the horses….the horses being bred by people who don’t test their stock and refuse to breed affected animals. I pray for the day the major breed organizations require it. I wish I could introduce the Powers That Be in those associations to my girl so they could see firsthand what it means for them to be such a prisoner of their own body. I wish I could haul her to every breeder’s barn and show them why it is so important that they test and not breed positive horses. My poor, dear, sweet equine angel…no soul deserves to endure this, especially not one like her.

    I don’t know what my horse future holds. I don’t know if I’ll ever ride into a competitive arena again or ever return to camp with a dry derriere. But if God gave her to me, He also gave me to her. I have been entrusted with her life, and I trust her with mine every time I slide down onto her round, comfortable back. And I will continue to give everything I can to this incredible creature who has given me so much in so many ways.

    ~Jenny Faye

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    RESOURCES:

    University of Minnesota:  http://www.cvm.umn.edu/umec/lab/PSSM/home.html

    Facebook PSSM groups:
     http://www.facebook.com/groups/10150115027635241/
    and http://www.facebook.com/groups/173333789359749/)

    Yahoo group:  http://sports.dir.groups.yahoo.com/group/EPSM/

    GENETIC TESTING FOR PSSM TYPE 1 IS AVAILABLE THROUGH ANIMAL GENETICS AND AQHA.  CARRIERS MAY BE ASYMPTOMATIC AND WHILE MOST COMMON IN STOCK AND DRAFT HORSES, ALL BREEDS CAN BE AFFECTED.  PLEASE TEST ALL BREEDING STOCK!!!  Both AQHA and Animal Genetics offer a panel test that identifies the top five genetic disorders.

    AQHA Testing:  http://www.aqha.com/Resources.aspx

    Animal Genetics Testing:  http://www.horsetesting.com/Equine.asp

     

COMMENTS

3 Responses to Equine Polysaccharide Storage Myopathy

  • Laura Lee Thomas wrote on June 11, 2012 at 4:44 // Reply

    I hadn’t heard of PSSM either until about 2 years ago! This should be treated the same as the HYPP and test results printed on the horse’s papers. Can they trace PSSM to a particular blood line?

  • Mary Agayev wrote on July 12, 2012 at 2:50 // Reply

    Very informative post…I have been around horses most of my life too and never really knew about this…thanks for being brave enough to share your story of Harley and bless you for being there for her despite such an uncertain future…that means alot to her I am sure.

  • Esther Mckay wrote on November 14, 2013 at 2:44 // Reply

    Thanks for sharing your story, I have a PSSM cross Welsh pony who has been unwell for 2 years. I only just worked it out for myself after hours of frustrating examinations by many vets. My pony is much better already now he is on the diet however he still has leg tremors and anxiety. Good luck and thanks for your links also, I have joined both the facebook pages and I’m thinking of starting one in Australia as it would be nice to have local support. Hang in there, I know exactly how you feel, my pony is as precious to me as your Harley and I never gave up…x

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