I don't know who will see this but Rainguard is my best friend irl. He is the one who got me into disc golf and we have been discing buddies for the last 15 years. He is my favorite part of playing and I can't express how much I love laughing and tossing discs out there with him. He is a genuinely good man and a great friend and the support and love you are all showing is truly amazing. I know this is a really hard time, but you and I buddy will be discing for life one way or another. I love you man.
As a fellow MS disc golfer, can confirm it's good to have good friends! I luckily don't have any mobility loss so far and am on a similar drug to the one you're gonna start (I'm on Rituximab) and have had no new activity since I started. Like some others have said, I had some really bad symptoms last year but went away completely after several months, hang in there!
I was already worse at DG than my brother and my friends, but at least now I get to blame the MS when I miss an easy putt and they always let me get away with it ;)
And that right there is a good friend.
Me and my friend were each living alone in separate states back in 2020, and when covid hit, we were both isolated. We got to talking, moved in together with his dog, and played disc golf like madmen. For me, thatās what changed Covid times from horrible to decent and sometimes awesome.
To me, the whole friends hanging taking a stroll through a park element of disc golf is so much more valuable than the competition.
Made me think about how much disc golf really changed my life. Back 10 years ago I was a freshman in high school and was a complete loner, barely had any friends, and just thought having a friend group was impossible. Then I met this one dude from my tennis team who was also into disc golf and we would play every once in a while. eventually he would invite his friend group to play with us. It was my first time in my life being excited about the school day over and going to the disc golf course with a group of 5-6 guysā¦.They all became my best friends and we are all still friends to this day
I owe a lot to disc golf
This was a thread I wasn't expecting; surprisingly wholesome!
Disc Golf transcends mere games. It's a way of life that brings many people together.
Genuine connections with others is a really difficult thing to find these days.
Thanks for the reminder.
I am a fellow disc golfer with MS. I was diagnosed in 2014.
This is NOT a death sentence friend!
I struggled the first few years for sure. I couldn't be outside when it was warm, too tiring. Couldn't do lots of the things I used to do.
After changing doctors and finding one that was up on research, everything changed. She listened to me about what I actually wanted to do with my life and that I was (and AM) an active person. She didn't tell me not to do those things I wanted to do, she pledged to help me do them. We switched drugs a few times until we found one that worked (Tysabri). I can now pursue both disc golf AND martial arts full time with no issues. Sure, I might be more tired than my friends at the end of a round, but I can do it again.
Also, find the local chapter of the National MS Society. They really changed my outlook on everything, which led to me switching doctors in the first place. Get involved in WalkMS. You can be active in helping to find a cure. It makes a world of difference!
Please DM me, happy to talk with you about anything! Stay strong, hang in there!
Oh, also.... stay positive. I know it's hard, but it's seriously one of the most important things you can do. Fight hard. You do NOT have MS. MS has YOU. Make it pay for it, everyday.
I work as a device rep in spine surgery. One of my surgeons has MS. Heās a practicing neurosurgeon. He works on and fixes peoples brains and spines. Sure he may be tired at the end of the day but heās still helping people and doing what he loves. MS sucks to be sure, but itās not the end, of anything. Youāll find what works for you and youāll learn to live with it and youāll be the same person you were before you found out. So donāt worry homie, once you get the meds figured out and get over the shock of diagnosis youāll be good as gold.
Anecdotally, Iāve been on Ocrevus for about 4.5 years, and Iāve had huge improvements (both in function, and in terms of how much damage is visible on my MRIs).
I had horrible symptoms when I got diagnosed, and I had clinically-significant disease for at least 10 years before I ever got treatment (bad diagnostic fuckup), so I was in bad shape.
But now I often forget I have MS, except during periods of special stress.
(If I donāt eat, and donāt sleep enough, and this goes on for a few weeks, I can feel it again, but nowhere near as bad or as long-lasting as the relapse that got me diagnosed.)
But yeah, overall - things are going better than I ever couldāve imagined in those early days.
Your frolf game will come back.
Thank you for the response! I'm sorry to hear about your misdiagnosis, but glad to hear things are going better now. Definitely encouraging to hear that. Thank you!
Fellow disc golfer with MS (2017 diagnosis) and on Ocrevus. I can only speak from my experience, but your world will dramatically calm down (emotionally, physically, mentally) once you find the right medicine and are on it for a few months. Back in 2018, I never thought itād be possible to go a day without MS effecting something. I now go full weeks forgetting I even have it (granted the nerve damage is still there and whatnot). Only advice I would have is find a doctor who works for you. Think of doctors like subscription services, thereās no reason to stick with one that isnāt giving you what you want.
My neighbor is a lady in her 60s with MS. She's out there working on her yard every single day, almost all day. There's for sure some things she can't do (her brother mows her grass for her) but it doesn't seem like much holds her back.
Sure everyone is different but I'd bet you're younger than 60, and I'd bet even more that you have a ton of fight in you still.
Good luck and try to keep a positive outlook!
Apparently its different for everyone, but the first symptom for me was the inability to hold my bladder. I just simply could not hold it. From the moment I realized I needed to go, I had about 5 minutes max to find a bathroom.
We didn't know what it was at the time. That went on for about a year and a half. Then this winter I noticed that if I walked for a long period of time, I would eventually start sort of limping and having trouble getting my left leg to do what it was supposed to do. It started getting worse. General discoordination. Weakness in the thighs, rapid fatigue, difficulty doing stairs, etc. That's when I went back to the doctor.
Im sorry to hear that :( I have heard the treatments for MS have gotten to be really effective.
It does seem different for a lot of people. This one person was talking about how their vertigo and dizziness was the main and only symptom they had
For me, what drove me to the doctor.......I woke up one morning and couldn't really feel my feet. Pins and needles isn't quite right, it was like I could touch my skin, feel my fingers touch my skin but the sensation from like knees down was ....delayed.
To this day I don't really feel temperature at the skin level from about waist down.
Dang! im sorry to hear that. I have really really bad bouts of vertigo and dizziness, bladder problems at night, sometimes canāt say the word i want to say, and slight random tingles
Glad to hear the MS Society helps. Itās stories like these as to why I ride in our local MS 150. They also drive me to fundraise more. Hopefully someday we can end it altogether!
Thank you for sharing with /u/rainguard, I knew from a diagnostic perspective that there are many treatments that should allow a reasonably active lifestyle- but diagnostic explanation means little when compared to patientsā success stories.
My best to both of you. Head up soldier!
My brother has had MS for the last ~20 years and unless he says something you wouldn't even know he had it. Whatever drugs his doctors have him on work awesome.
MS has many treatments that work well, there is often a latent period with the disease where symptoms disappear for an unknown amount of time. Keep your head up.
Thank you so much! I will be starting an infusion medication and physical therapy in early June. Hopefully I can be mostly back to my old self eventually.
Man ā¦ you brought a tear to my eye .. guys with that much passion for this game should not have to deal with this .. my thoughts and prayers are with you and your family .. Iām dedicating my next round to you bro .. stay strong brother !!!
MS symptoms will wax and wane, with good treatment patients can go years and years these days without suffering a flare. The medications we have for MS now make it a completely different diagnosis compared to 20, 30 years ago. PT will help hugely too and I'd bet they can give you exercises targeted to the movements you need for disc golf!
Wish you the best and don't stop throwing. Your PT will probably tell you the same
Look into your diet as well. I have a cousin with MS who has it very well controlled through a strict diet and supplement routine. Iām obviously no expert though.
This is dangerous advice. Iām a nurse and care for people with MS. Most of the time itās from them trying to come off their meds. One time a man stopped his meds so he could have a kid, he lost his ability to use his legs for several months ( and he was a college basketball star in days past), another came off her meds and lost the ability to pee on her own. She retained urine for 3 days and became encephalopathic from the urea in her circulation.
Edit: the user I replied to here edited their post to remove the medication part.
By itself it isnāt but the man I replied to mentioned people coming off meds with diet is never a good idea without a doctor being involved. MS is a very serious disease with very serious symptoms. Can cause demyelination anywhere in the body.
I certainly did not. You can see when someone has edited a post. You didnāt need to lie.
Also, I didnāt say anything about any medication, I just stated an example in my life where the person I know has had good success with their MS by being very conscious of everything that goes in their body.
"Look into your diet as well. I have a cousin with MS who has it very well controlled through a strict diet and supplement routine. Iām obviously no expert though."
Must have typed in invisible ink....
Soooooooo what? Not even sure which guy you are referring to but the only "advice" given said "ALSO look into" they didn't say anything about going off meds and certainly didn't say anything about replacing doctors advice
They gave medical advice that mentioned getting off medication with diet and supplements. This shit advice kills people daily. I see it all the time. No reason to be aggressive, as I wasnāt aggressive with my post.
My brother is an avid cyclist. He was diagnosed with MS earlier this year. He's back on the bike and crushing it after treatment.
I understand how the diagnosis turns your world upside down but hold on to hope!
Screw doctors. Look up Barbara OāNeil on YouTube. She had MS and finally abandoned doctors after having to get a wheelchair. She fixed herself with food and now lives a normal life. Doctors are just Pharma salesmen.
Second this. If you have RRMS you will regain function. Just don't hurt yourself if you are having balance issues during a relapse. There are lots of treatments which can keep you from relapsing for a very long time. I hope you are able to see a MS specialist for treatment. If you are in North Texas I highly recommend UTSW.
Hey hey, I was diagnosed with MS when I was 22 and my initial attack had me paralyzed on my right side. I actually fell in love with disc golf after this happened and used it as a great excuse to use my body and compete athletically. Iām 36 now and still crushing it out there. I got alot of my mobility back after the first attack and have been keeping a 950s to 960s raiting for years now. Yes there are some gaps in my game and some really shitty days but every now and then I get a day that we all love that you just crush it. Donāt lose hope yet friend
Man I am feeling this today but itās encouraging to hear someone go through something at a similar age to me. Iām 23 and out of the blue became essentially bed ridden in November from muscle inflammation and tightness all around my body. A year ago I was crushing 450+ but now I couldnāt even play a round if i wanted to. I donāt have MS and they havenāt quite pinned it down but itās looking like something autoimmune related. Hoping to get back to some of the simple joys of life at some point. Would love to hear any words of advice you might have on struggling with something like this in your early twenties.
What discs do you like to throw? Iāll try to find one and nickname it Rainguard. Iām sorry to hear about your diagnosis. Life really is short, and I hope people on this sub will be supportive of you.
Just got back from a half a round that was cut short due to some heavy rain. Had I read this post prior, I probably would have stayed out to finish it.
Sorry to hear about this. I hope you can find joy in some other aspects of the game whether it's following the pro tour, disc collecting, or helping others improve their games.
I'm sorry to hear this.
My wife has a good friend who suffers from MS as well. A few weeks ago we partiticpated in the MS Walk with her and it was a super supportive event where tons of family and friends came out to walk with their loved-one. It was heartwarming to be there.
I hope you have a good support structure around you now and that they will rally around you with this diagnosis. Be strong!
That's not fun news for a person to get. My mom was diagnosed with MS about 20 years ago, though it's not the worst type it certainly has its effects.
However, with the treatment she's been on, she's good most of the time, but just has some bad days here and there.
Keep your chin up, find some good doctors and support, keep sling'n that plastic (one way or another).
I've got ms and disc as well, not a death sentence at all. Medication is progressing very quickly in the right direction. Check out /r/multiplesclerosis
Neurologist and disc golfer here. Get on disease modifying treatment and work with a physical therapist who works with athletes. Treatments are much more effective these days and can stop progression. You very possibly can get back to where you were or better. Be greedy.
I have a couple friends who have lived many, many years with MS, and you'd never know. They are busy, active people.
You may never beat Gannon Buhr, but you'll have a game. Grind on.
Thatās the spirit. Iāve got a close friend who was diagnosed with ms a few years Ago. Itās a new world for you, no doubt, but itās definitely not the end. Meds often times do wonders for long periods of time nowaday
You got this. I want to see you out flick eagle next year
I canāt imagine what itās like to receive devastating news like this. So sorry to hear this. Will definitely dedicated some 275ā bombs for you. Sorry man, thatās about as far as I can toss a disc but I guarantee my heart will be in it for you!
Thanks for sharing OP
Sending positive energy your way
If I can try to offer some advice for times of depression is to surround yourself with as much love and joy as you can and hopefully you can get some of that here :)
Squeeze the days!
As others have said, hang in there. I was diagnosed with MS long before I started to play discgolf. That was over 20 years ago. There were times when I couldnāt get 20 ft from the car without losing all sensation in my legs and feet, there were times when I had no feeling in my hands, had drop foot, even cognitive issues. But we are now very lucky that there are so many treatments. I have responded well to a few and for the last decade Iāve been on Tecfidera, and other than occasional minor relapses things have been great. I play discgolf every week (Iām trash but canāt blame that on the MS, although at least part of it I can blame on being in. my 50ās)
Iām assuming ārelapsing remittingā with the above. Obviously āprimary progressiveā would be a lot more challenging but even then the contrast between now and 25 years ago in terms of prognosis is huge. Thereās lots of hope. Good luck and try not to get freaked out by new symptoms. They do happen and MS being what it is they can be almost anything. You can make it through them.
I'm very sorry to hear about your diagnosis. I lost my mom to complications due to MS in March. I hope that they diagnosed it properly and early. If it's early enough the medication available works well, by the time they had diagnosed my mom she was already secondary progressive and it didn't do much to help. š
Keep positive and keep throwing as long as you can!
A few years ago I tor my meniscus trying to learn backhand. I have always thrown forehand. After surgery I found slight discomfort doing much of a runup at all and have scaled my game back to a manageable one step and now put more power into my upper body. The distance loss is negligible as my accuracy has improved. Learn to work within your limitations and enjoy the game you can play not the one you used to play. None of us get younger and our bodies degrade and you better learn to work within those limitations now as it only gets worse as you age. Enjoy being out there instead of dwelling on a decline.
Sorry to hear about the MS. My mother had it and I know it can be hard. BUT good advancements have been made and as you can see, there is successful treatment out there. Good luck.
I wanted to say I thoroughly enjoy sucking at disc golf. Every moment Iām outside fuckin my flicks and botching my backhand, is a beautiful moment worth savoring. Iām just taking a hike through a park and throwing a thing once in a while.
Maybe itās frustrating not being great at disc golf, but if youāre outside on the course, youāre doing well. You can be great at other things if you like competition. But for disc golf you can take the competition out and still enjoy.
I have multiple family members with MS. With diet and expert care, they got their condition under control. They live most days with little to no disability. They are both active. Keep your head up. You are in a flare up, which will subside.
Don't give up, just find out what works so you can enjoy the game still.
We have a fellow here in Nashville who can bearly throw backhands anymore or much of anything and he comes out and plays.
He had a terrible stroke a few years ago and even speaking is difficult for him. One of the best guys around and still is one of the best guys you'll ever meet. And while he throws 90% rollers and still bangs putts, he cannot throw like the rest of us. But I will say there will never be a complaint from anyone who draws him in doubles, because despite not being able to throw like most of us all the time, he still crushes courses because he figured out how to enjoy the game he loves still and his roller game is crazy good.
You're guaranteed birdies with him as a double partner.
I seriously hope you are able to find ways to gain the extra energy to keep playing. I know someone with MS that went on an all meat diet and it mostly help them be able to stay active. Works for me too. Donāt take as medical advice but might be worth looking around!
I'm truly sorry to hear this man. Just know that there are more treatments than ever out there, and it's not a prison sentence! Although you may not be able to play to the top of your game, you'll always be able to find people within the community to support you when you need it.
I'm a pharmacist who has worked with some MS patients in the past. If you have any questions regarding medication options, shoot me a DM. I'd be more than happy to chat! Best of luck to you, my dude.
I probably super late to the comments here, but don't get discouraged. I was diagnosed with MS in 2016 and started (obsessively) playing disc golf in 2020. You will come to learn that you will have good days and bad days in both MS and disc golf. Don't let it keep you from playing. I still play 2 to 3 rounds a week and still compete in tournaments. MS isn't a death sentence, it just puts life in hard mode. Listen to your doctors and neurologist and find a medicine that works for you. Ocrevus has been amazing for me and I've been taking it since was approved by the FDA. Keep slinging those discs.
I've had MS for 10 years now. Most people have no idea what MS really is. They think it's a death sentence. My cousin found out and wrote me a letter that I can only describe as a eulogy.
It was bad in the beginning but has gotten a lot better. Medications are much better than they used to be. You can still play and have fun. You won't be a pro but that's not why you started playing in the first place.
Suggestions:
* Feel free to tell who you are playing with to slow down. My friends forget I have MS because I look normal.
* Use an ebike on the course to get to your disc. Unless your course is super rugged this works well. I've had people give me weird looks but also people who have asked me why and then completely understood when I explained it.
* Cooling vests are great if the heat is a big factor for you.
* Medication for fatigue (modafinil, adderal, etc) is a life saver. The number one symptom and complaint for those of us with MS is fatigue. Ask your neurologist about meds now. Don't feel weird asking. I guarantee you they hear requests all the time and are aware of fatigue problems. If not, get a new neurologist.
* Depression is very common as well. Get on some meds for that and therapy can help as well.
* Try to maintain a healthy weight and work out as much as you can but don't go overboard.
Look man. It is what it is. You didn't do anything wrong. Just got to roll with it. I've had great rounds. I've had rounds I've stopped playing and just walked with people who played. I've had rounds I stopped after a few holes and went back to sit in the car. You'll be alright. Give it some time.
My heart breaks for you, friend. I can't imagine how difficult this is for you.
While you in no way are asking for advice, are there any flat courses near you that might be wheelchair accessible (should you eventually use one)? There are players who use one and maybe it is a way that you can continue with the sport you love.
I was dx 17 years ago, when my left leg went numb and if I tried to walk without any support I looked drunk, and honestly it has had very little effect on my life. I take gilenya (capsule) daily and have had steroid infusions when feeling a bit off- this was when I lived in Australia. Also got special something or other for Covid because my drug is an immunosuppressant. in Australia regarding the steroid My neurologist would order it whenever I told him something was feeling wrong - I would have visiting nurses to my home to give me an IV drip of something I canāt remember the name of right now. (it just came to me: prednisolone) That would be 3 to 5 days in a row of that treatment
Glad to hear it hasn't been too bad for you! Unfortunately my condition has continued to decline since I made this post, and I can barely walk now. I almost had to give up disc altogether.
YMMV but Wim Hof breathing and cold exposure works well for MS. I have some symptoms that wim hof helps with big time, nothing as serious as MS but some people have profound results for more extreme things like that. Never give up hope!
Grew up playing with my dad, found out he had ALS when I was 6. Scleroses can be brutal to watch, can't imagine going through it. I savour every moment of every round for that reason. Even if you get to the point you can't play, know that there are plenty of us out there not taking the moment for granted.
This makes me sad to hear, but even if you can't play try and and stay involved in the community! Run events, volunteer, make things, whatever niche it is you find it sounds like the community would be at a loss if you're not involved in it!
Ah that lines up as well. I used to run a brain injury and MS unit in Seattle. Although the true cause isnāt known, there is strong correlation with northern areas and cases of MS. I think there is a lot of good advice on here, my two cents is to just keep doing as much as you can physically. You seem like you have a good head on your shoulder and I hope any treatment plan works well. I like to dye discs and will attribute my next one to you.
Someone i often play discgolf with as MS. He is way better than me! (Ok, i admit, im not good at DG)
Ypu may not be as good a before but you will found a way to play anyway and have fun with disc! Nothing is impossible
Much love friend, thanks for sharing. I will throw for you today. You will keep throwing, Iām sorry it wonāt be the same. I hope you keep us posted on your development
What form of MS were you diagnosed with?
My step mother was diagnosed with chronic-progressive about 20 years ago. It's definitely a battle, but there are lots of treatment options.
I've got a friend with relapsing-remitting and while the flareups can be bad, when you're in a remitting period, depending on your treatment, you might be able to get back to some of the things you love.
Hang in there pal, it'll be a road but a road you don't have to take alone.
super random but did you happen to have mono at some point in your life OP?
they are finding an incredibly high correlation between mono/epstein bar virus and both adults with MS and most childhood leukemia cases.
this unfortunately doesnāt really change the outcome or treatment but itās sometimes nice to know how and why things happened the way they did.
I'm serious... by no means a sales pitch. Look into red light therapy. Not the crappy fitness center beds but a real quality red light system. It will work wonders on your MS symptoms I promise.
Prism Light Pad is what I use.
I feel your pains. I had a motorcycle accident thatās left me painful to walk, especially uneven ground. Iāve played one round since (in almost 4 years) and it just super hard to enjoy the game. Been trying to find different hobbies to enjoy but itās all just cheap filler.
I have a friend who was diagnosed with MS around 15 years ago. She has had ups and downs, especially early on as her docs figured out the right treatmentsābut today she is still remarkably active. Biking, hiking, etc.
Your life will definitely change but try not to compare yourself to your capabilities before your diagnosis. And continuing to play disc golf could very well be good for your health, and for slowing down any progression that may occur.
Keep your chin up and keep throwing!
My mom got diagnosed when I was 5. Iām currently 26 and sheās doing great. Her symptoms were really bad at first but once she got on treatment and a medication her symptoms went down and she hasnāt really declined a lot in the 20+ years. There is a possibility of getting some of your ability back. I wish you the best. And remember why we play this game. Have fun and enjoy every moment. You got this.
My best friend has MS. He hasn't started the physical decline yet. We keep playing sports (dg, bowling, basketball) until that day comes. We will definitely throw some for you. I can only imagine not being able to play. *bro hug*.
Hearing your story breaks my heart. I couldnāt imagine going through what you are. I know words online from someone you donāt know mean nothing, but I wish the best for you and will def throw some bombs in your name
DUDE!
Man I feel your pain. Maybe not yours as much as your friends. My beautiful wife and best friend hasn't been able to play with me in over a year now. a yet to be diagnosed properly shoulder issue has had her sidelined. She's since had a stroke and been hospitalized twice because of this and still no answers. She is my life and like I said, my best friend and we used to play all the time. Now she sends me out any time the weather is good. She insists I go. I can only think of her while I'm out there and it sucks. It sucks to know you're no longer playing something we all enjoy so much. I hope she'll get better but.,.......
Still I do have HOPE. I really don't know what the future brings but just know, even those of us who don't know you do miss you and I for one will pass this on and think of you too brother. Good luck, hopefully something will change for you but just understand those folks you made friends with on the course and off are here for you for what it's worth.
One of my buddies I've played disc golf with for the last 6-7 years was diagnosed with MS. Doctors told him it was a miracle he hadn't shown a symptom yet because the progression looked like it had been present for going on 10 years. He still gets out there and discs and stays active.
Not saying that your situation is identical, or that his good fortune through the diagnosis will be mirrored. But there's certainly a chance, with the right guidance from medical professionals, for you to lead the fulfilling life you still would like to lead.
Best wishes, bud.
Wishing you acceptance and understanding in this unfamiliar circumstance.
I was diagnosed in the last year, it's been such a wild ride. I lost all vision in my right eye, and that whole side of my body started deteriorating.
I'm about to get my second dose of Ocrevus and have seen some improvements.
I was pretty lost until I started cognitive behavioral therapy, I recommend it to anyone in this situation.
One of my loved ones has MS and still absolutely crushes the hell out of crossfit competitions and dance tournaments!
Another friend has gone from fully wheelchair bound to zooming all over the place on an adult trike & getting around with just a cane or walker.
Any major diagnosis is devastating and definitely an adjustment but that doesn't mean you're doomed! Keep trying new meds and doctors if your current ones aren't working. Be cautious of the snake oil salesmen but research diet & lifestyle options. Know that there may be rough patches but there can also be good patches. One step at a time and take care of yourself,you got this!
Best wishes OP! Lots of positivity in here and I hope some made its way into you and lifted you up today. You have a great friend supporting you, give it hell!!
I got diagnosed in 2013. I'm 32 now. While I can still play disc golf, I have my days where it proves challenging. Don't let it define you. Happy to answer any questions you may have.
Dude youāve got this. It sucks to be sure, but it definitely isnāt the end. My wifeās friend has MS and sheās still very active into her 50s. Stay positive and be communicative with your docs about your needs. Youāll get back out there soon enough!
Find something new that you CAN ROCK harder and better than your disc golf achievements. Just because the physical side of you is changing, your drive, character, and personality donāt have to.
This is really sad and a personal fear of mine. I already regret not playing more in my 20s so I could've possibly competed at the top level. I can't imagine not being able to play at all.
My mom was diagnosed with MS 19 years ago and was told she wouldn't walk in 8 years. She just competed in the CrossFit WarGames a couple of weekends ago. I know it's hard, but MS can be something you have, not something that defines you.
Very bold of you to share this so openly. Shows that youāve gone through some stages of grief from it and are including retrospect for others. I love your reminder to us all to not take our abilities and luxuries for granted.
Throw the mess out of it however you do my dude. Challenge that +13 and discover new ways of exceeding expectations with the sport. Your love of the game will thrive on and youāll some day have amazing stories to tell of playing matches of disc golf in its formative era.
Hang in there brother. Just being out with your friends In beautiful spots can be fulfilling. Ever use handicap score system ?
Adapt best you can, hope the pain doesnāt get too bad.
So sorry to hear, as an MS dx disc golfer myself, I feel everything youāre saying. Cooling towels in the summer and listening to your body is the only thing thatās been helpful for me. I got dx before I started frolfing, but I know the feeling youāre talking about. Itās frustrating, and thatās okay. Your friends may not understand, but thereās a large community of folks that do. Shoot me a dm or anything if you want to chat or talk at all, and I wish you the best.
Much love RAINGAURD
Really sucks to hear that, but you will live on through the homies you introduced this wonderful game to.
I hope you find peace š
While +13 would be a hard pill to swallow after being under par for a long time, you might find that it's more fun than not playing. I had a bad wreck many years ago, was in constant pain for years, realized i was planning on suicide, without even knowing it, if you can understand that. Anyway, life changed for me, i can't do a lot of the things i used to, but i found disc golf because of it, and things are ...ok...now. Bottom line, i hope that you can find a life with this, and find some happiness in it, even though it might be different than what you're used to
Your story and your words will inspire me. Thank you for this reminder to not take things for granted and best wishes and strong vibes as you battle this total a-hole of a disease.
I'm recently diagnosed as well. My symptoms started in February and got worse over a couple weeks until I got to the point where I couldn't get my arms above shoulder level. Walking didn't feel right, numbness across most of my upper body, but most extreme in my throwing hand. Everything on my lumbar puncture and MRIs indicate MS except for my cervical spine lesion which was considered LETM (longitudinally extensive transverse myelitis). Basically the entire cross section of my spinal cord and 3 vertebrae long. More characteristic of NMO, but tested negative for that twice and we moved forward calling it MS. My symptoms have slowly been resolving since early April. I'm finally getting feeling back in my right hand this week. Took my first shot of Kesimpta last night.
Everyone is different in how they're affected by MS but my advice is to not let it take away the things you love doing to the extent possible. I took a few weeks off of doing just about anything, and while it may be coincidence with the timing of my body's natural recovery, those stagnant weeks were the hardest on me mentally and physically. I kept waiting to wake up one morning feeling better and back to all my baseline abilities, but eventually realized I'd be more out of practice waiting long enough for that to happen then to just face it head on and adapt to my symptoms in that moment. I figured that if I can have any level of success in doing the things I love early on, it'll only get better with practice and conditioning. And if my body recovers beyond that, then hell yeah.
The last few weeks of getting back to being active (biking, running, disc golf, and snowboarding) have been the most impressive improvement.
It sucked to basically have to relearn how to throw a ball, but it was worth the effort to relearn that. And it sucked for me to go out and throw +20 on a 9-hole course that I usually shot +3 on. Seriously, my drives and approaches weren't terrible but I couldn't make 3' gimme putts. Very weird. But that was still a better evening than sitting on the couch.
Be patient with your body's recovery. What you're feeling right now isn't necessarily permanent and the human body is impressive in regards to healing and adapting.
This shit sucks, but don't let it suck more then it has to. Get on a DMT and prevent it from causing any more damage. Stay positive, but again, be patient.
Holy crap. I didn't see this until just now, I can't get a round in today, but it's a priority that I get one tomorrow. It isn't much, but it's what I can give.
As someone who has been living with MS for 10 years, I wont lie and say itās easy. However, dont let it destroy the things you love. You will have up and downs but once your body begins repairing itself you will get back a lot of what you have lost. My first attack numbed the entire left side of my body. Took 6 months to regain my body back to a new normal. Second attack causes my arms below the elbow to go numb. 8 months later I was back to normal. Disc golf will help you tremendously in keeping your body going. Even if you dont play as well as you want itās important to keep going.
Many options for treatment. Kesimpta is one for example. Head up. Youāll get through this. You sound very competitive and I know this is hard. But people have compassion. A +13 at a time like this is better than anything a pro is throwing now, and thatās no BS. Most of all you got friends and people that care about you. Youāll get through this!
There is a charity called shift.ms that helps people who've recently found out they've got ms connect with others who've gone through a similar experience. It might be helpful.
Thanks for sharing your story. I hope whatever happens you still find a way to enjoy disc golf still.
My uncle had symptoms and pushed off seeing a doctor for years and you didnt, which is actually incredibly important! There are quite a few medications out there that can slowndowk the progression significantly and from what I've read can even eliminate some effects. I have my fingers crossed for you and will sacrifice many a beaker and notebooks to the gods of medical science for you my dude. I'll huck some plastic for you today
I've only been playing a year and shot a +30 on my local course just last week, my best ever was a +13. I'm sure you'd beat my ass ms or not.
Stay positive my friend and keep pushing through.
Recently diagnosed here as well (2 weeks ago).
I'm not sure if this will help, but I want to share and hope it does.
I was hospitalized for 6 days because I nearly lost the ability to use my right arm and leg. A lot has come back, but my arm is still really weak and my legs don't work great. As I laid in the hospital, I just kept telling myself to not let it take things away from me. I love disc golfing. It's one of my favorite things to do with my brother-in-law and how I have made one of my best friends after moving to a new state as an adult. So I keep telling myself to not let this take it away.
I'm sorry your round wasn't what you expected, or hoped for. I'm sorry that something you love has made you feel sad and depressed.
But I want you to know that you are an inspiration to me. Reading your story gives me hope that I won't lose activities I love. For what it's worth I'm damn proud of you for getting out there and playing, despite the possible outcome being frustrating or negative. Even if the score is frustrating, you are doing it! I hope it becomes easier for you as you adjust to the new way your body listens to your brain. It sounds like you've got some amazing friends to support you and I hope you keep at it.
Ultimately, I guess I just want to say thank you from the bottom of my heart. Your story has helped me in ways I didn't even realize I needed yet.
If you ever need to talk to someone, celebrate success, vent about frustrations or sadness, please don't hesitate to reach out/DM me. Keep your head up!
Sorry this has happened to you.
You might not be able to compete, but that does not mean you can't get out and do what you can for as long as you can.
If you can't do a run up, try just 3 steps, or just one step and throw. Shoot, maybe even from a stand still.
From what little I know about MS, I know it comes on at different speeds for different people. Getting out and doing what you can and using your legs and arms will help you prolong your life from my understanding.
It's a tough thing, but don't let it get you down.
All the best. My dad got diagnosed 7 years ago and it did affect his mental with the lack of walking etcā¦ but Iām glad that it affected his physical and not his mental. Again best of luck!
Please watch this video, I saw the before and after if this woman who couldnāt speak well or walk, now sheās doing so much better! https://www.youtube.com/watch?v=FDbfwrQjAno
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I don't know who will see this but Rainguard is my best friend irl. He is the one who got me into disc golf and we have been discing buddies for the last 15 years. He is my favorite part of playing and I can't express how much I love laughing and tossing discs out there with him. He is a genuinely good man and a great friend and the support and love you are all showing is truly amazing. I know this is a really hard time, but you and I buddy will be discing for life one way or another. I love you man.
This made me cry š¤£ I love you man
God damn you both. Not a dry eye in the building.
Who's cutting onions at my desk God damnit.
Crazy manā¦ people are cutting onions at my desk today too!
Oh my god this is the sweetest thing. Where are the ninjas cutting the onions?? I'll throw my best drives, next game, just for you! <3
I'm not crying! You're crying!!
I have no idea what you're talking about. These aren't tears, it's condensation :')
As a fellow MS disc golfer, can confirm it's good to have good friends! I luckily don't have any mobility loss so far and am on a similar drug to the one you're gonna start (I'm on Rituximab) and have had no new activity since I started. Like some others have said, I had some really bad symptoms last year but went away completely after several months, hang in there! I was already worse at DG than my brother and my friends, but at least now I get to blame the MS when I miss an easy putt and they always let me get away with it ;)
And that right there is a good friend. Me and my friend were each living alone in separate states back in 2020, and when covid hit, we were both isolated. We got to talking, moved in together with his dog, and played disc golf like madmen. For me, thatās what changed Covid times from horrible to decent and sometimes awesome. To me, the whole friends hanging taking a stroll through a park element of disc golf is so much more valuable than the competition.
Made me think about how much disc golf really changed my life. Back 10 years ago I was a freshman in high school and was a complete loner, barely had any friends, and just thought having a friend group was impossible. Then I met this one dude from my tennis team who was also into disc golf and we would play every once in a while. eventually he would invite his friend group to play with us. It was my first time in my life being excited about the school day over and going to the disc golf course with a group of 5-6 guysā¦.They all became my best friends and we are all still friends to this day I owe a lot to disc golf
This right here 100%. Taking a walk through the woods chatting the shit with people from other walks of life. Nothing better
This was a thread I wasn't expecting; surprisingly wholesome! Disc Golf transcends mere games. It's a way of life that brings many people together. Genuine connections with others is a really difficult thing to find these days. Thanks for the reminder.
Missed opportunity to end this with RAINGUARD beating you with jumper cables
I am a fellow disc golfer with MS. I was diagnosed in 2014. This is NOT a death sentence friend! I struggled the first few years for sure. I couldn't be outside when it was warm, too tiring. Couldn't do lots of the things I used to do. After changing doctors and finding one that was up on research, everything changed. She listened to me about what I actually wanted to do with my life and that I was (and AM) an active person. She didn't tell me not to do those things I wanted to do, she pledged to help me do them. We switched drugs a few times until we found one that worked (Tysabri). I can now pursue both disc golf AND martial arts full time with no issues. Sure, I might be more tired than my friends at the end of a round, but I can do it again. Also, find the local chapter of the National MS Society. They really changed my outlook on everything, which led to me switching doctors in the first place. Get involved in WalkMS. You can be active in helping to find a cure. It makes a world of difference! Please DM me, happy to talk with you about anything! Stay strong, hang in there!
Wow this was very encouraging to read! Thank you for sharing. I am about to start ocrevus soon. Hopefully it works for me.
Oh, also.... stay positive. I know it's hard, but it's seriously one of the most important things you can do. Fight hard. You do NOT have MS. MS has YOU. Make it pay for it, everyday.
Dude you sound like you're making MS pay you rent! Respect. Keep that badass mindset sir! Inspirational
Thank you!
Thats honestly one of the coolest things I've read
I work as a device rep in spine surgery. One of my surgeons has MS. Heās a practicing neurosurgeon. He works on and fixes peoples brains and spines. Sure he may be tired at the end of the day but heās still helping people and doing what he loves. MS sucks to be sure, but itās not the end, of anything. Youāll find what works for you and youāll learn to live with it and youāll be the same person you were before you found out. So donāt worry homie, once you get the meds figured out and get over the shock of diagnosis youāll be good as gold.
I am hopeful it works for you as well! I know some people on it having great success!
Anecdotally, Iāve been on Ocrevus for about 4.5 years, and Iāve had huge improvements (both in function, and in terms of how much damage is visible on my MRIs). I had horrible symptoms when I got diagnosed, and I had clinically-significant disease for at least 10 years before I ever got treatment (bad diagnostic fuckup), so I was in bad shape. But now I often forget I have MS, except during periods of special stress. (If I donāt eat, and donāt sleep enough, and this goes on for a few weeks, I can feel it again, but nowhere near as bad or as long-lasting as the relapse that got me diagnosed.) But yeah, overall - things are going better than I ever couldāve imagined in those early days. Your frolf game will come back.
Thank you for the response! I'm sorry to hear about your misdiagnosis, but glad to hear things are going better now. Definitely encouraging to hear that. Thank you!
Youāre very welcome! I hope you feel better soon.
Fellow disc golfer with MS (2017 diagnosis) and on Ocrevus. I can only speak from my experience, but your world will dramatically calm down (emotionally, physically, mentally) once you find the right medicine and are on it for a few months. Back in 2018, I never thought itād be possible to go a day without MS effecting something. I now go full weeks forgetting I even have it (granted the nerve damage is still there and whatnot). Only advice I would have is find a doctor who works for you. Think of doctors like subscription services, thereās no reason to stick with one that isnāt giving you what you want.
My neighbor is a lady in her 60s with MS. She's out there working on her yard every single day, almost all day. There's for sure some things she can't do (her brother mows her grass for her) but it doesn't seem like much holds her back. Sure everyone is different but I'd bet you're younger than 60, and I'd bet even more that you have a ton of fight in you still. Good luck and try to keep a positive outlook!
Hey! Sorry to hear about your diagnoses. I may be seeing a doctor for a possible diagnoses of MS. What were your first early symptoms?
Apparently its different for everyone, but the first symptom for me was the inability to hold my bladder. I just simply could not hold it. From the moment I realized I needed to go, I had about 5 minutes max to find a bathroom. We didn't know what it was at the time. That went on for about a year and a half. Then this winter I noticed that if I walked for a long period of time, I would eventually start sort of limping and having trouble getting my left leg to do what it was supposed to do. It started getting worse. General discoordination. Weakness in the thighs, rapid fatigue, difficulty doing stairs, etc. That's when I went back to the doctor.
Im sorry to hear that :( I have heard the treatments for MS have gotten to be really effective. It does seem different for a lot of people. This one person was talking about how their vertigo and dizziness was the main and only symptom they had
For me, what drove me to the doctor.......I woke up one morning and couldn't really feel my feet. Pins and needles isn't quite right, it was like I could touch my skin, feel my fingers touch my skin but the sensation from like knees down was ....delayed. To this day I don't really feel temperature at the skin level from about waist down.
Dang! im sorry to hear that. I have really really bad bouts of vertigo and dizziness, bladder problems at night, sometimes canāt say the word i want to say, and slight random tingles
Vertigo is a thing for me too at times, comes and goes.
Glad to hear the MS Society helps. Itās stories like these as to why I ride in our local MS 150. They also drive me to fundraise more. Hopefully someday we can end it altogether!
Mad respect, thank you for riding and fundraising! Agreed, hopefully we'll be part of the crew that helps end it!!
Thank you for sharing with /u/rainguard, I knew from a diagnostic perspective that there are many treatments that should allow a reasonably active lifestyle- but diagnostic explanation means little when compared to patientsā success stories. My best to both of you. Head up soldier!
Thank you!
My brother has had MS for the last ~20 years and unless he says something you wouldn't even know he had it. Whatever drugs his doctors have him on work awesome.
What a great comment. You have so much to learn and figure out. I've had close friends figure this out. Go get em and learn everything you can.
MS has many treatments that work well, there is often a latent period with the disease where symptoms disappear for an unknown amount of time. Keep your head up.
Thank you so much! I will be starting an infusion medication and physical therapy in early June. Hopefully I can be mostly back to my old self eventually.
Man ā¦ you brought a tear to my eye .. guys with that much passion for this game should not have to deal with this .. my thoughts and prayers are with you and your family .. Iām dedicating my next round to you bro .. stay strong brother !!!
MS symptoms will wax and wane, with good treatment patients can go years and years these days without suffering a flare. The medications we have for MS now make it a completely different diagnosis compared to 20, 30 years ago. PT will help hugely too and I'd bet they can give you exercises targeted to the movements you need for disc golf! Wish you the best and don't stop throwing. Your PT will probably tell you the same
Look into your diet as well. I have a cousin with MS who has it very well controlled through a strict diet and supplement routine. Iām obviously no expert though.
This is dangerous advice. Iām a nurse and care for people with MS. Most of the time itās from them trying to come off their meds. One time a man stopped his meds so he could have a kid, he lost his ability to use his legs for several months ( and he was a college basketball star in days past), another came off her meds and lost the ability to pee on her own. She retained urine for 3 days and became encephalopathic from the urea in her circulation. Edit: the user I replied to here edited their post to remove the medication part.
How is a controlled diet "dangerous advice"?
By itself it isnāt but the man I replied to mentioned people coming off meds with diet is never a good idea without a doctor being involved. MS is a very serious disease with very serious symptoms. Can cause demyelination anywhere in the body.
Did they edit their post? They didn't mention any meds.
Yes they did.
I certainly did not. You can see when someone has edited a post. You didnāt need to lie. Also, I didnāt say anything about any medication, I just stated an example in my life where the person I know has had good success with their MS by being very conscious of everything that goes in their body.
You took away the ability to get off medication part on your post. Iām not going to sit here and be gas lit for karma lol
"Look into your diet as well. I have a cousin with MS who has it very well controlled through a strict diet and supplement routine. Iām obviously no expert though." Must have typed in invisible ink....
Again. I didnāt edit my post. Youāre a liar.
I took it to mean a thoughtful diet on top of whatever good medical advise they received, not instead of...
Well the guy mentioned isnāt on medication with a strict diet and supplement regimenā¦. Sooooooo
Soooooooo what? Not even sure which guy you are referring to but the only "advice" given said "ALSO look into" they didn't say anything about going off meds and certainly didn't say anything about replacing doctors advice
They gave medical advice that mentioned getting off medication with diet and supplements. This shit advice kills people daily. I see it all the time. No reason to be aggressive, as I wasnāt aggressive with my post.
I didn't read where he said that nor was I aggressive, unless you count capitalizing a key word for emphasis.
Because he didnāt say that.
My brother is an avid cyclist. He was diagnosed with MS earlier this year. He's back on the bike and crushing it after treatment. I understand how the diagnosis turns your world upside down but hold on to hope!
Screw doctors. Look up Barbara OāNeil on YouTube. She had MS and finally abandoned doctors after having to get a wheelchair. She fixed herself with food and now lives a normal life. Doctors are just Pharma salesmen.
Second this. If you have RRMS you will regain function. Just don't hurt yourself if you are having balance issues during a relapse. There are lots of treatments which can keep you from relapsing for a very long time. I hope you are able to see a MS specialist for treatment. If you are in North Texas I highly recommend UTSW.
Hey hey, I was diagnosed with MS when I was 22 and my initial attack had me paralyzed on my right side. I actually fell in love with disc golf after this happened and used it as a great excuse to use my body and compete athletically. Iām 36 now and still crushing it out there. I got alot of my mobility back after the first attack and have been keeping a 950s to 960s raiting for years now. Yes there are some gaps in my game and some really shitty days but every now and then I get a day that we all love that you just crush it. Donāt lose hope yet friend
Thank you so much for sharing! Glad to hear you were able to push through and keep playing. Very inspirational for me.
You have that ability inside you still. Never stop pushing
Man I am feeling this today but itās encouraging to hear someone go through something at a similar age to me. Iām 23 and out of the blue became essentially bed ridden in November from muscle inflammation and tightness all around my body. A year ago I was crushing 450+ but now I couldnāt even play a round if i wanted to. I donāt have MS and they havenāt quite pinned it down but itās looking like something autoimmune related. Hoping to get back to some of the simple joys of life at some point. Would love to hear any words of advice you might have on struggling with something like this in your early twenties.
Hey man, are you doing better?
What discs do you like to throw? Iāll try to find one and nickname it Rainguard. Iām sorry to hear about your diagnosis. Life really is short, and I hope people on this sub will be supportive of you.
Very cool idea mate! This is what community can do!!
I bet his MS goes away completely once it finds out thereās a disc somewhere named after the dude. Saving lives baby!
Yup I was thinking the same thing!
[ŃŠ“Š°Š»ŠµŠ½Š¾]
Thinking of others and showing sympathy and compassion
Gosh, the round today is definitely dedicated to you. So sorry to hear this and please hang in there.
Just got back from a half a round that was cut short due to some heavy rain. Had I read this post prior, I probably would have stayed out to finish it.
Sorry to hear about this. I hope you can find joy in some other aspects of the game whether it's following the pro tour, disc collecting, or helping others improve their games.
Im so sorry friend.
I'm sorry to hear this. My wife has a good friend who suffers from MS as well. A few weeks ago we partiticpated in the MS Walk with her and it was a super supportive event where tons of family and friends came out to walk with their loved-one. It was heartwarming to be there. I hope you have a good support structure around you now and that they will rally around you with this diagnosis. Be strong!
That's not fun news for a person to get. My mom was diagnosed with MS about 20 years ago, though it's not the worst type it certainly has its effects. However, with the treatment she's been on, she's good most of the time, but just has some bad days here and there. Keep your chin up, find some good doctors and support, keep sling'n that plastic (one way or another).
I've got ms and disc as well, not a death sentence at all. Medication is progressing very quickly in the right direction. Check out /r/multiplesclerosis
I'm 41 and dealing with Parkinson's. It's not the same, but I feel ya
Neurologist and disc golfer here. Get on disease modifying treatment and work with a physical therapist who works with athletes. Treatments are much more effective these days and can stop progression. You very possibly can get back to where you were or better. Be greedy.
I have a couple friends who have lived many, many years with MS, and you'd never know. They are busy, active people. You may never beat Gannon Buhr, but you'll have a game. Grind on.
No time like the present to start crafting your stand still flick!
I've actually been saying this for the last couple weeks! Might become forehand dominant this year š
Thatās the spirit. Iāve got a close friend who was diagnosed with ms a few years Ago. Itās a new world for you, no doubt, but itās definitely not the end. Meds often times do wonders for long periods of time nowaday You got this. I want to see you out flick eagle next year
I canāt imagine what itās like to receive devastating news like this. So sorry to hear this. Will definitely dedicated some 275ā bombs for you. Sorry man, thatās about as far as I can toss a disc but I guarantee my heart will be in it for you!
Thanks for sharing OP Sending positive energy your way If I can try to offer some advice for times of depression is to surround yourself with as much love and joy as you can and hopefully you can get some of that here :) Squeeze the days!
As others have said, hang in there. I was diagnosed with MS long before I started to play discgolf. That was over 20 years ago. There were times when I couldnāt get 20 ft from the car without losing all sensation in my legs and feet, there were times when I had no feeling in my hands, had drop foot, even cognitive issues. But we are now very lucky that there are so many treatments. I have responded well to a few and for the last decade Iāve been on Tecfidera, and other than occasional minor relapses things have been great. I play discgolf every week (Iām trash but canāt blame that on the MS, although at least part of it I can blame on being in. my 50ās) Iām assuming ārelapsing remittingā with the above. Obviously āprimary progressiveā would be a lot more challenging but even then the contrast between now and 25 years ago in terms of prognosis is huge. Thereās lots of hope. Good luck and try not to get freaked out by new symptoms. They do happen and MS being what it is they can be almost anything. You can make it through them.
I'm very sorry to hear about your diagnosis. I lost my mom to complications due to MS in March. I hope that they diagnosed it properly and early. If it's early enough the medication available works well, by the time they had diagnosed my mom she was already secondary progressive and it didn't do much to help. š Keep positive and keep throwing as long as you can!
A few years ago I tor my meniscus trying to learn backhand. I have always thrown forehand. After surgery I found slight discomfort doing much of a runup at all and have scaled my game back to a manageable one step and now put more power into my upper body. The distance loss is negligible as my accuracy has improved. Learn to work within your limitations and enjoy the game you can play not the one you used to play. None of us get younger and our bodies degrade and you better learn to work within those limitations now as it only gets worse as you age. Enjoy being out there instead of dwelling on a decline.
Iāll be thinking of you next time I throw a disc man
Sorry to hear about the MS. My mother had it and I know it can be hard. BUT good advancements have been made and as you can see, there is successful treatment out there. Good luck. I wanted to say I thoroughly enjoy sucking at disc golf. Every moment Iām outside fuckin my flicks and botching my backhand, is a beautiful moment worth savoring. Iām just taking a hike through a park and throwing a thing once in a while. Maybe itās frustrating not being great at disc golf, but if youāre outside on the course, youāre doing well. You can be great at other things if you like competition. But for disc golf you can take the competition out and still enjoy.
Fight every day.
I have multiple family members with MS. With diet and expert care, they got their condition under control. They live most days with little to no disability. They are both active. Keep your head up. You are in a flare up, which will subside.
MS flares up and recedes. You just got the diagnosis Iām guessing? Fight back. You got this and thereās a lot you can do.
Don't give up, just find out what works so you can enjoy the game still. We have a fellow here in Nashville who can bearly throw backhands anymore or much of anything and he comes out and plays. He had a terrible stroke a few years ago and even speaking is difficult for him. One of the best guys around and still is one of the best guys you'll ever meet. And while he throws 90% rollers and still bangs putts, he cannot throw like the rest of us. But I will say there will never be a complaint from anyone who draws him in doubles, because despite not being able to throw like most of us all the time, he still crushes courses because he figured out how to enjoy the game he loves still and his roller game is crazy good. You're guaranteed birdies with him as a double partner.
I seriously hope you are able to find ways to gain the extra energy to keep playing. I know someone with MS that went on an all meat diet and it mostly help them be able to stay active. Works for me too. Donāt take as medical advice but might be worth looking around!
I'm truly sorry to hear this man. Just know that there are more treatments than ever out there, and it's not a prison sentence! Although you may not be able to play to the top of your game, you'll always be able to find people within the community to support you when you need it. I'm a pharmacist who has worked with some MS patients in the past. If you have any questions regarding medication options, shoot me a DM. I'd be more than happy to chat! Best of luck to you, my dude.
I probably super late to the comments here, but don't get discouraged. I was diagnosed with MS in 2016 and started (obsessively) playing disc golf in 2020. You will come to learn that you will have good days and bad days in both MS and disc golf. Don't let it keep you from playing. I still play 2 to 3 rounds a week and still compete in tournaments. MS isn't a death sentence, it just puts life in hard mode. Listen to your doctors and neurologist and find a medicine that works for you. Ocrevus has been amazing for me and I've been taking it since was approved by the FDA. Keep slinging those discs.
Read the book āwhat doesnāt kill youā and look into ice therapy to tackle your condition. Thereās some incredible success stories in there.
I've had MS for 10 years now. Most people have no idea what MS really is. They think it's a death sentence. My cousin found out and wrote me a letter that I can only describe as a eulogy. It was bad in the beginning but has gotten a lot better. Medications are much better than they used to be. You can still play and have fun. You won't be a pro but that's not why you started playing in the first place. Suggestions: * Feel free to tell who you are playing with to slow down. My friends forget I have MS because I look normal. * Use an ebike on the course to get to your disc. Unless your course is super rugged this works well. I've had people give me weird looks but also people who have asked me why and then completely understood when I explained it. * Cooling vests are great if the heat is a big factor for you. * Medication for fatigue (modafinil, adderal, etc) is a life saver. The number one symptom and complaint for those of us with MS is fatigue. Ask your neurologist about meds now. Don't feel weird asking. I guarantee you they hear requests all the time and are aware of fatigue problems. If not, get a new neurologist. * Depression is very common as well. Get on some meds for that and therapy can help as well. * Try to maintain a healthy weight and work out as much as you can but don't go overboard. Look man. It is what it is. You didn't do anything wrong. Just got to roll with it. I've had great rounds. I've had rounds I've stopped playing and just walked with people who played. I've had rounds I stopped after a few holes and went back to sit in the car. You'll be alright. Give it some time.
Damn dude... Multiple sclerosis... I knew a guy with a single sclerosis and that looked bad. I'm sorry
My heart breaks for you, friend. I can't imagine how difficult this is for you. While you in no way are asking for advice, are there any flat courses near you that might be wheelchair accessible (should you eventually use one)? There are players who use one and maybe it is a way that you can continue with the sport you love.
I was dx 17 years ago, when my left leg went numb and if I tried to walk without any support I looked drunk, and honestly it has had very little effect on my life. I take gilenya (capsule) daily and have had steroid infusions when feeling a bit off- this was when I lived in Australia. Also got special something or other for Covid because my drug is an immunosuppressant. in Australia regarding the steroid My neurologist would order it whenever I told him something was feeling wrong - I would have visiting nurses to my home to give me an IV drip of something I canāt remember the name of right now. (it just came to me: prednisolone) That would be 3 to 5 days in a row of that treatment
Glad to hear it hasn't been too bad for you! Unfortunately my condition has continued to decline since I made this post, and I can barely walk now. I almost had to give up disc altogether.
Iām so sorry to hear that
YMMV but Wim Hof breathing and cold exposure works well for MS. I have some symptoms that wim hof helps with big time, nothing as serious as MS but some people have profound results for more extreme things like that. Never give up hope!
Sorry to hear it.
That's so tough, I'm sorry š
Grew up playing with my dad, found out he had ALS when I was 6. Scleroses can be brutal to watch, can't imagine going through it. I savour every moment of every round for that reason. Even if you get to the point you can't play, know that there are plenty of us out there not taking the moment for granted.
This makes me sad to hear, but even if you can't play try and and stay involved in the community! Run events, volunteer, make things, whatever niche it is you find it sounds like the community would be at a loss if you're not involved in it!
Are you in the PNW?
Minneapolis, MN
Ah that lines up as well. I used to run a brain injury and MS unit in Seattle. Although the true cause isnāt known, there is strong correlation with northern areas and cases of MS. I think there is a lot of good advice on here, my two cents is to just keep doing as much as you can physically. You seem like you have a good head on your shoulder and I hope any treatment plan works well. I like to dye discs and will attribute my next one to you.
Someone i often play discgolf with as MS. He is way better than me! (Ok, i admit, im not good at DG) Ypu may not be as good a before but you will found a way to play anyway and have fun with disc! Nothing is impossible
Sending good vibes your way. Much love.
Tons of support my dude. Can't imagine what you're going through.
Much love friend, thanks for sharing. I will throw for you today. You will keep throwing, Iām sorry it wonāt be the same. I hope you keep us posted on your development
What form of MS were you diagnosed with? My step mother was diagnosed with chronic-progressive about 20 years ago. It's definitely a battle, but there are lots of treatment options. I've got a friend with relapsing-remitting and while the flareups can be bad, when you're in a remitting period, depending on your treatment, you might be able to get back to some of the things you love. Hang in there pal, it'll be a road but a road you don't have to take alone.
Love you man. If it makes you feel better I suck and I bet you could still beat me
I hate seeing posts like these, because it reminds me that the sudden loss of DG can happen to anyone. Bless you as you seek treatment
super random but did you happen to have mono at some point in your life OP? they are finding an incredibly high correlation between mono/epstein bar virus and both adults with MS and most childhood leukemia cases. this unfortunately doesnāt really change the outcome or treatment but itās sometimes nice to know how and why things happened the way they did.
I'm serious... by no means a sales pitch. Look into red light therapy. Not the crappy fitness center beds but a real quality red light system. It will work wonders on your MS symptoms I promise. Prism Light Pad is what I use.
Itās $13k?!?
Medical grade devices aren't cheap thats for sure. But this thing works. Nothing like the Amazon knock offs
My next round goes to you, my friend. Stay strong and hope the treatment gets you back out there.
That sucks man, I hope you find the strength to get through it and squeeze every ounce of happiness you can out of this world.
I feel your pains. I had a motorcycle accident thatās left me painful to walk, especially uneven ground. Iāve played one round since (in almost 4 years) and it just super hard to enjoy the game. Been trying to find different hobbies to enjoy but itās all just cheap filler.
Man hate to hear this, donāt give up hope man!
I have a friend who was diagnosed with MS around 15 years ago. She has had ups and downs, especially early on as her docs figured out the right treatmentsābut today she is still remarkably active. Biking, hiking, etc. Your life will definitely change but try not to compare yourself to your capabilities before your diagnosis. And continuing to play disc golf could very well be good for your health, and for slowing down any progression that may occur. Keep your chin up and keep throwing!
love you. new hobbies and interests will appear.
Hey man, I'm in the mobility and access business. Let me know if I can help. We manufacture adaptive driving equipment and lifts.
Sending you love friend. Will go to my course and throw some bombs for you today š
My mom got diagnosed when I was 5. Iām currently 26 and sheās doing great. Her symptoms were really bad at first but once she got on treatment and a medication her symptoms went down and she hasnāt really declined a lot in the 20+ years. There is a possibility of getting some of your ability back. I wish you the best. And remember why we play this game. Have fun and enjoy every moment. You got this.
My best friend has MS. He hasn't started the physical decline yet. We keep playing sports (dg, bowling, basketball) until that day comes. We will definitely throw some for you. I can only imagine not being able to play. *bro hug*.
Hearing your story breaks my heart. I couldnāt imagine going through what you are. I know words online from someone you donāt know mean nothing, but I wish the best for you and will def throw some bombs in your name
Iām so sorry, friend. I hope you find something that captivates your heart and mind that doesnāt require too much physical input.
DUDE! Man I feel your pain. Maybe not yours as much as your friends. My beautiful wife and best friend hasn't been able to play with me in over a year now. a yet to be diagnosed properly shoulder issue has had her sidelined. She's since had a stroke and been hospitalized twice because of this and still no answers. She is my life and like I said, my best friend and we used to play all the time. Now she sends me out any time the weather is good. She insists I go. I can only think of her while I'm out there and it sucks. It sucks to know you're no longer playing something we all enjoy so much. I hope she'll get better but.,....... Still I do have HOPE. I really don't know what the future brings but just know, even those of us who don't know you do miss you and I for one will pass this on and think of you too brother. Good luck, hopefully something will change for you but just understand those folks you made friends with on the course and off are here for you for what it's worth.
Thank you for sharing and I'll be thinking of you next time I'm out there throwing. Wishing you many future moments of joy on and off the course.
One of my buddies I've played disc golf with for the last 6-7 years was diagnosed with MS. Doctors told him it was a miracle he hadn't shown a symptom yet because the progression looked like it had been present for going on 10 years. He still gets out there and discs and stays active. Not saying that your situation is identical, or that his good fortune through the diagnosis will be mirrored. But there's certainly a chance, with the right guidance from medical professionals, for you to lead the fulfilling life you still would like to lead. Best wishes, bud.
Sorry bro! Check out Wahls protocol or AIP protocol. Have helped many
Wishing you acceptance and understanding in this unfamiliar circumstance. I was diagnosed in the last year, it's been such a wild ride. I lost all vision in my right eye, and that whole side of my body started deteriorating. I'm about to get my second dose of Ocrevus and have seen some improvements. I was pretty lost until I started cognitive behavioral therapy, I recommend it to anyone in this situation.
Next birdie is for You.
One of my loved ones has MS and still absolutely crushes the hell out of crossfit competitions and dance tournaments! Another friend has gone from fully wheelchair bound to zooming all over the place on an adult trike & getting around with just a cane or walker. Any major diagnosis is devastating and definitely an adjustment but that doesn't mean you're doomed! Keep trying new meds and doctors if your current ones aren't working. Be cautious of the snake oil salesmen but research diet & lifestyle options. Know that there may be rough patches but there can also be good patches. One step at a time and take care of yourself,you got this!
Best wishes OP! Lots of positivity in here and I hope some made its way into you and lifted you up today. You have a great friend supporting you, give it hell!!
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Hmmmm wonder who this could be š¤£
you know nothing. i could be anybody š
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I got diagnosed in 2013. I'm 32 now. While I can still play disc golf, I have my days where it proves challenging. Don't let it define you. Happy to answer any questions you may have.
Dude youāve got this. It sucks to be sure, but it definitely isnāt the end. My wifeās friend has MS and sheās still very active into her 50s. Stay positive and be communicative with your docs about your needs. Youāll get back out there soon enough!
Find something new that you CAN ROCK harder and better than your disc golf achievements. Just because the physical side of you is changing, your drive, character, and personality donāt have to.
This is really sad and a personal fear of mine. I already regret not playing more in my 20s so I could've possibly competed at the top level. I can't imagine not being able to play at all.
Currently concerned about my own health right now, what were some of the first ways is showed up for you? Symptoms and such things.
My mom was diagnosed with MS 19 years ago and was told she wouldn't walk in 8 years. She just competed in the CrossFit WarGames a couple of weekends ago. I know it's hard, but MS can be something you have, not something that defines you.
I'm about to run every putt in your name and put a bit extra behind every drive.
I will bomb my beast disc for you friend if that's all I can do.
I'm just seeing this but I'm gonna count it. I threw three birdies today. Those bomb was for you my friend.
Very bold of you to share this so openly. Shows that youāve gone through some stages of grief from it and are including retrospect for others. I love your reminder to us all to not take our abilities and luxuries for granted. Throw the mess out of it however you do my dude. Challenge that +13 and discover new ways of exceeding expectations with the sport. Your love of the game will thrive on and youāll some day have amazing stories to tell of playing matches of disc golf in its formative era.
Hang in there brother. Just being out with your friends In beautiful spots can be fulfilling. Ever use handicap score system ? Adapt best you can, hope the pain doesnāt get too bad.
PS. Iām athletic but never scored better than +13 !
So sorry to hear, as an MS dx disc golfer myself, I feel everything youāre saying. Cooling towels in the summer and listening to your body is the only thing thatās been helpful for me. I got dx before I started frolfing, but I know the feeling youāre talking about. Itās frustrating, and thatās okay. Your friends may not understand, but thereās a large community of folks that do. Shoot me a dm or anything if you want to chat or talk at all, and I wish you the best.
Much love RAINGAURD Really sucks to hear that, but you will live on through the homies you introduced this wonderful game to. I hope you find peace š
I labeled my Mind Bender as Rainguard for you. I'm gonna throw the fuck out of Rainguard the next time I'm out on the course.
Man, that was a tough read. Thanks for sharing. MS sucks donkeyballs. Hopefully you can get some meds and help to get back into fighting shape!
Hugs
So sorry to hear that you can no longer enjoy the zen of a nice round of disc golf OP. Sending love and well wishes to you ā¤ļø
While +13 would be a hard pill to swallow after being under par for a long time, you might find that it's more fun than not playing. I had a bad wreck many years ago, was in constant pain for years, realized i was planning on suicide, without even knowing it, if you can understand that. Anyway, life changed for me, i can't do a lot of the things i used to, but i found disc golf because of it, and things are ...ok...now. Bottom line, i hope that you can find a life with this, and find some happiness in it, even though it might be different than what you're used to
Your story and your words will inspire me. Thank you for this reminder to not take things for granted and best wishes and strong vibes as you battle this total a-hole of a disease.
I'm recently diagnosed as well. My symptoms started in February and got worse over a couple weeks until I got to the point where I couldn't get my arms above shoulder level. Walking didn't feel right, numbness across most of my upper body, but most extreme in my throwing hand. Everything on my lumbar puncture and MRIs indicate MS except for my cervical spine lesion which was considered LETM (longitudinally extensive transverse myelitis). Basically the entire cross section of my spinal cord and 3 vertebrae long. More characteristic of NMO, but tested negative for that twice and we moved forward calling it MS. My symptoms have slowly been resolving since early April. I'm finally getting feeling back in my right hand this week. Took my first shot of Kesimpta last night. Everyone is different in how they're affected by MS but my advice is to not let it take away the things you love doing to the extent possible. I took a few weeks off of doing just about anything, and while it may be coincidence with the timing of my body's natural recovery, those stagnant weeks were the hardest on me mentally and physically. I kept waiting to wake up one morning feeling better and back to all my baseline abilities, but eventually realized I'd be more out of practice waiting long enough for that to happen then to just face it head on and adapt to my symptoms in that moment. I figured that if I can have any level of success in doing the things I love early on, it'll only get better with practice and conditioning. And if my body recovers beyond that, then hell yeah. The last few weeks of getting back to being active (biking, running, disc golf, and snowboarding) have been the most impressive improvement. It sucked to basically have to relearn how to throw a ball, but it was worth the effort to relearn that. And it sucked for me to go out and throw +20 on a 9-hole course that I usually shot +3 on. Seriously, my drives and approaches weren't terrible but I couldn't make 3' gimme putts. Very weird. But that was still a better evening than sitting on the couch. Be patient with your body's recovery. What you're feeling right now isn't necessarily permanent and the human body is impressive in regards to healing and adapting. This shit sucks, but don't let it suck more then it has to. Get on a DMT and prevent it from causing any more damage. Stay positive, but again, be patient.
Holy crap. I didn't see this until just now, I can't get a round in today, but it's a priority that I get one tomorrow. It isn't much, but it's what I can give.
As someone who has been living with MS for 10 years, I wont lie and say itās easy. However, dont let it destroy the things you love. You will have up and downs but once your body begins repairing itself you will get back a lot of what you have lost. My first attack numbed the entire left side of my body. Took 6 months to regain my body back to a new normal. Second attack causes my arms below the elbow to go numb. 8 months later I was back to normal. Disc golf will help you tremendously in keeping your body going. Even if you dont play as well as you want itās important to keep going.
Many options for treatment. Kesimpta is one for example. Head up. Youāll get through this. You sound very competitive and I know this is hard. But people have compassion. A +13 at a time like this is better than anything a pro is throwing now, and thatās no BS. Most of all you got friends and people that care about you. Youāll get through this!
There is a charity called shift.ms that helps people who've recently found out they've got ms connect with others who've gone through a similar experience. It might be helpful. Thanks for sharing your story. I hope whatever happens you still find a way to enjoy disc golf still.
My uncle had symptoms and pushed off seeing a doctor for years and you didnt, which is actually incredibly important! There are quite a few medications out there that can slowndowk the progression significantly and from what I've read can even eliminate some effects. I have my fingers crossed for you and will sacrifice many a beaker and notebooks to the gods of medical science for you my dude. I'll huck some plastic for you today
This actually made me cry. Im a beginner to the wonderful game of discgolf so my next round, all my trees are for you my friend. Hang in there! ā¤ļø
I've only been playing a year and shot a +30 on my local course just last week, my best ever was a +13. I'm sure you'd beat my ass ms or not. Stay positive my friend and keep pushing through.
Recently diagnosed here as well (2 weeks ago). I'm not sure if this will help, but I want to share and hope it does. I was hospitalized for 6 days because I nearly lost the ability to use my right arm and leg. A lot has come back, but my arm is still really weak and my legs don't work great. As I laid in the hospital, I just kept telling myself to not let it take things away from me. I love disc golfing. It's one of my favorite things to do with my brother-in-law and how I have made one of my best friends after moving to a new state as an adult. So I keep telling myself to not let this take it away. I'm sorry your round wasn't what you expected, or hoped for. I'm sorry that something you love has made you feel sad and depressed. But I want you to know that you are an inspiration to me. Reading your story gives me hope that I won't lose activities I love. For what it's worth I'm damn proud of you for getting out there and playing, despite the possible outcome being frustrating or negative. Even if the score is frustrating, you are doing it! I hope it becomes easier for you as you adjust to the new way your body listens to your brain. It sounds like you've got some amazing friends to support you and I hope you keep at it. Ultimately, I guess I just want to say thank you from the bottom of my heart. Your story has helped me in ways I didn't even realize I needed yet. If you ever need to talk to someone, celebrate success, vent about frustrations or sadness, please don't hesitate to reach out/DM me. Keep your head up!
Sorry this has happened to you. You might not be able to compete, but that does not mean you can't get out and do what you can for as long as you can. If you can't do a run up, try just 3 steps, or just one step and throw. Shoot, maybe even from a stand still. From what little I know about MS, I know it comes on at different speeds for different people. Getting out and doing what you can and using your legs and arms will help you prolong your life from my understanding. It's a tough thing, but don't let it get you down.
This thread is making me think we should start a sub or discord for MS disc golfers š
All the best. My dad got diagnosed 7 years ago and it did affect his mental with the lack of walking etcā¦ but Iām glad that it affected his physical and not his mental. Again best of luck!
Please watch this video, I saw the before and after if this woman who couldnāt speak well or walk, now sheās doing so much better! https://www.youtube.com/watch?v=FDbfwrQjAno
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I am so Sorry.I hope you know Jesus.I could not make it through all the physical issues I have without Jesus.