Sorry this is an alt. Anyone have or know of anyone with MS? To say I am upset is a bit of an understatement. I am not going to be a drag on my daughter. Honestly I am about 5-6 months away from being done with life.
How far into the diagnosis are you? Many people with MS live full, rich lives for many many years. There are many things you can do to stay healthy and active for a long time to come. There are many people with it, and alot of support for those living with MS. Have you investigted any resources in your community? Online? Do you have a diagnosis? How old are you and how old were you when you began to have symptoms?
You are obviously distraut and distressed, and you seriously need counseling help if you are hinting at suicide. This is probably not the right place to find help with thoughts of ending your life; here you can probably find others with MS who can encourage you with their stories, but please get help for your depression from your community.
I can tell you that daughters do not consider their mother’s medical problems a burden, all though circumstances can be heartbreaking, and difficult. . All of us expect that some kind of disease or medical problems will overcome our parents and that they will need our support. If it isn’t MS, it can be stroke, heart disease, diabetes, myriad other issues. Its part of the burden if you will, of us living long lives in our times.
I can tell you that one thing you can do to make your daughter even more upset, and give her an even more difficult and heartbreaking burden than helping you with deteriorating help would be if you took your own life. Mine did. Its an awful, awful burden to live with, full of pain and sorrow, years later, unlike heath problems could ever be. Please think of her, and yoru family, and get some counseling to help you cope. Aging and disease, even if it comes unexpectedly early in our lives if part of the cycle of life, whatever it has for us. If your daughter loves you, and you love her, you two can find a way through this in a way both of you can manage. I wish you the very very best, finding some good support.
I don’t have any experience with MS. Just want to wish you strength and wisdom to keep fighting. ((((((((hugs)))))))
I ride at a barn with an older lady with MS who came out for short rides a few times a week. She was no longer the brilliant equestrian that she once was, but she still led a full life & enjoyed spending a bit of time on a dependable horse. She was a wealth of knowledge, and any of us would be blessed by being able to spend more time with her.
It’s not a death sentence. But I highly recommend that you attend counseling with someone experienced with people getting a chronic illness diagnosis. Managing the mental side of it is far from easy.
I have MS. I finally got diagnosed 22 years ago, though, thinking back, MS had affected me most of my life. I got on disability 20 years ago because I could no longer work, and my disability is severe enough that Social Security gave me disability the first time I applied for it.
Keep on riding! It is because of wanting to RIDE that I got myself out of bed. I had horses on my little farm back then, but by the time I got the horse ready to ride I was just too exhausted to ride. I finally found two ladies who have let me ride their horses (one with a small handicapped program, the other a regular riding teacher) and I got back into the saddle. I now DEPEND on riding horses to keep me walking on my own two feet. I was in an electric wheelchair, I wore my wheelchair out, but because of riding horses I did not have to replace it.
I do not have enough energy to catch the horse, groom the horse, tack up the horse and then ride, so the ladies I ride under do all that for me. I have now spent the last decade thoroughly exploring what one can do at the walk, and it is a good bit more than people think. The ladies I ride under do not mind my utter lack of progress, I think they get their gratification by seeing me walk a lot better when I get off the horse. I can only ride for 30 minutes at a time, right now I ride three horses a week, and though I cannot do what I used to be able to do in the saddle any more I have become a much better rider over the last decade.
I have been blogging for years on Barnmice (http://barnmice.com, under my name Jackie Cochran. I have 257 blogs there, most of them about me riding with MS.
The key with my children (2 young men) was for me to concentrate on not letting my MS ruin their lives (encouraging them to go out with friends, basically not letting myself use my MS as an excuse to cripple their lives too.) Depression is a side effect of the MS, and it can abate as one learns to adapt, otherwise there are several medicines that can be effective. MS can be an enormous challenge but now there are several effective drugs against it unlike, when I was diagnosed. Slow down, get some canes (I use two canes now to walk), consider counseling, accept that your house will often look like a total mess, and cut out any activity that is not completely necessary. Try to get help with the horses, and if you can’t you will just have to accept that you cannot do as much work with them as before.
Grooming–trying to keep a horse’s coat good enough to get wows at the shows is so totally exhausting. On good days someone else grooms for me, the days I have to do it myself I mostly concentrate on where the saddle, girth and bridle go. Believe me, the horses don’t care if there is mud on their coat anywhere else.
Tack cleaning. This can be totally exhausting for me. I’ve ended up using LARD as my conditioner, maybe once a year after I get the leather thoroughly fatted up (avoid contact with metal because it corrodes some metals, and it also will melt rubber.) Otherwise I wipe my tack down if it obviously needs to be wiped down, wash off the bits after every ride, and the horses are happy.
Riding–I lost my proprioceptive sense, in that I often cannot tell where my legs, hands or body are in relation to the rest of my body or the horse. Therefore I NEED someone on the ground to correct me. Luckily my riding teacher has not gotten tired of continually reminding me about my legs, hands, head, etc…
Until I had my crippling exacerbation I was working full time, married with two boys, hour commute every day, 4 to 7 horses, and I often had to work overtime too! I always had MS throughout my working life, I just didn’t know I had it until it got too bad for the doctors to ignore. In fact, thinking back when I finally got diagnosed, I had active MS already for at least 36 years. Obviously getting MS was not the end of my life.
When I got diagnosed there were NO MS disease modifying drugs like there are now. NONE. Now there are several. It could be a lot worse. These drugs are horrifyingly expensive, but the drug companies ofen have programs for patients who do not have insurance or whose insurance won’t pay for the drugs.
Feel free to PM me. I’ve been there, done that, and got the T-shirt, often several times over. MS is definitely a challenge, but it is probably the most benign autoimmune disease a person can develop. My aunt had MS, and she lived until 85. I am 64, and I am still walking thanks to the horses. Life can still go on, you just have to make some adjustments to adapt to your new reality.
Take care and PM me any time you need someone to listen to you.
Jackie, that is the kind of encouragement and example the OP needs for managing your life under MS. I know (not from experience, but from patients) that the more exercise and passions for activity you participate in, the longer you stay healthy and more able to keep from declining so much. What a great post, and finding peopel like you are a wonderful resource for horse people who encounter MS. That’s a great post.
Remember stories you have encountered of people with devastating diagnoses - these things can bring a family closer together. No one wants such a diagnosis, but find a family member, maybe a daughter, to be a medical advocate. It can help you keep perspective when your doctor visits, your treaments, your options can be overwhelming. Don’t keep secrets. Embrace your family and friends, and be active learning everything you can about your diagnosis.
I hope the OP is listening, reading. I wish her a lot of love and luck and hope she doesn’t purposely keep herself separate from her family. You can’t go through this alone.
I know your concern is about MS. Its not about cancer, but it is about devestating diagnoses, which affect your family. I love this documentary of Tom Brokaw, and his diagnosis with cancer. Even though its about a disease which you don’t have, there are many things you can take away from it. The most important, the agressive search for medical practitioners who are active and concerned about your disease. The best part, is the growth and blessings which come to you and your family because of the disease. The closeness, the special moments, the energy you receive from them and your intrest in the mecial community and patients’ fights against the disease, and how far you can come with your family’s support and how far they can come getting close to you and each other through it.
If you feel distant, it may be because you haven’t embraced your family, and they don’t know enough about what you are going through to decide to get closwer to you, and decide what is important, such as learning about your disease and getting closer to you. Give them the chance, don’t separate yourself from your family, embrace them and find all the people in the world to embrace you. There are many many out there.
Try watching this and see if anything resonates with you. At the least you can say, Well! At least I don’t have cancer! But it addresses some things which can come your way if you talk to your family and try to put an “I can survive” outlook on this, and they begin to wrestle with it for themselves also. And for you.
We have a friend who has had MS for about 10 years. His initial episode was quite severe, but he seems to have done well since then. He is physically active, including trail riding, hiking in the mountains, and deer hunting. He says Gilenya has made a big difference for him.
See a good neurologist and find an MS support group.
What a wonderful post and very informing! Thanks
I have not been diagnosed with MS, but I have been diagnosed with myastheia gravis which is very similar. I keep on riding. I am not as good at it as I once was, but I can still enjoy a nice ride! I hope you are able to keep going. Riding is all I have.
Michael Muir of Access Adventure talks of how horses helped him when he was diagnosed with MS.
Yes, dx about 15 years ago, relapsing remitting.
Two things.
MS varies tremendously from person to person.
A piece of advice (two actually) that my wonderful neurologist (awesome guy, he was like a cross between Abe Vigoda and John Cleese) gave me early on.
“The placebo effect with MS is greater than with any other disease. Be mindful of your mindset, it can make a difference.”
“Do not go searching on the internet about MS, you will only frighten and depress yourself. There will always be someone who has it worse than you do, reading about them will not cheer you up.”
So! That said, 15 years or so post diagnosis. I diagnosed myself, without the internet, it was pretty straightforward I thought. I live on a farm, well a horse property, I have horses, a couple of them are draft horses. I do all the daily chores myself, I stack half the hay each year (20 tons, husband and I each do half, and no, we don’t to it all in one day). That’s actually more impressive since i broke my back 8 years ago (burst compression fracture of L1) don’t ride half broke draft horses on cold rainy days. I remember when I came into my neuro’s office in my neck to nether regions Jewitt brace, he laughed and shook his head and said “My MS patients don’t usually come in here with spinal fractures, you ARE the poster child for that drug!”
I’ve been on and off Betaseron for years, mostly off the last 6 years since husband’s mother died. Proof positive stress will make you sick. As my BFF said after she died “you won, you out lived the bitch!”
Biggest exacerbating factors for me, and most people, in this order, stress/heat/fatigue. Who wants to be stressed hot or tired? It’s a handy excuse sometimes 
I am, I know, one of the “lucky ones”, so far and I also know that could change. Henceforth I have tried to carpe diem my ass as much as possible.
I don’t know which kind you have, jingles that yours is one of the milder sorts. Happy to chat with you here, PMs, swap emails, on the phone, if you need an ear.
ETA so as not to seem excessively yippy skippy about it, I have had “those moments”, times I can’t drive ( I had to get a truck with a manual transmission) or the time I fell out on the farm when my leg was floppy and could NOT figure out how to get back up. Could NOT. I did finally figure it out but it took a while and I was grateful that it was a nice day, but I was also in the shade, and the dog decided to hang out with my and be company until I got it together So there are sucky days, but I try not to dwell on them, I don’t like to give it that much room in my life.
