My Journey Riding Bikes Despite Chronic Illness and Disability - Episode 1
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- čas přidán 1. 07. 2024
- My chronic illness has affected nearly every aspect of my life. In this series I explore ways to continue riding bikes despite my illness and limitations. I hope to connect with other people pushing through their struggles and finding ways to continue riding. As we experiment and learn, I hope we can find new ways to keep people in this sport longer, despite health challenges and disabilities. Thank you for your kindness and support in the comments section, we aim to make this channel welcoming to all.
Did you learn something new? Say thanks and support this channel: www.buymeacoffee.com/bigbrain...
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Gear I use and love:
30% off my helmet and my favorite eyewear: Julbo. Discount applied in link: bit.ly/3JD6EbK
10% off all Crank Brothers gear here: bit.ly/3tkTKdD using code "hardtailparty10"
5% off 5DEV cranks - Use coupon code "hardtailparty" for a discount code here: bit.ly/3c5Ha6b
Velocirax 5 bike rack: bit.ly/3xL3vSE
5% off roost titanium bars and stem: use code "hardtailparty22"
Spinergy MXX 30 - bit.ly/3AiL4UW (use coupon code "HTPARTY10" for 10% off)
SCC Tech Chain Lube and Cleaner - bit.ly/3mlVKPb
Outdoor Vitals Altitude Sun Hoodie - bit.ly/3Qpm9Iu
Hardtail Party Shirts, hats, and SWAG - shop.spreadshirt.com/hardtail...
Lab Austere hip pack: bit.ly/3p37K58 - code "Hardtail.Party" 25% off
Handup Gloves: bit.ly/3dhUe8z - use discount code "HARDTAILPARTY"
My shop tools: www.amazon.com/shop/hardtailp...
My tire sealant: bit.ly/2ULJirZ
Hardtail Party collection by pedal industries - code "HARDTAILPARTY": bit.ly/3ilNdqH
What's in my water bottles (Tailwind): bit.ly/2Xbxy3q
My hooded sun shirt: bit.ly/38NdU1x
Milwaukee Inflator. I love this thing! amzn.to/38Vdqrj
Presta adapter: amzn.to/3cMADx1
5% off all RSD bikes using code "party" - bit.ly/3dj2nZP -
amazon.com/shop/hardtailparty Any time you shop on amazon using this link, it helps me, even if it's not bike stuff.
Jenson: bit.ly/3WSODuD
Competitive Cyclist: bit.ly/3VA3GIK
Elite Carbon Wheels - code "HARDTAILPARTY" for 15% off. bit.ly/3ODlm5P
Note: many of my links are affiliate links. That means I get a small commission on purchases made using these links. You don't pay anything extra, but it helps support the channel. If you've learned something from my videos, consider using the affiliate links above. As an Amazon Influencer, I earn from qualifying purchases.
0:00 Intro
0:21 The Purpose of This Series
1:04 I Love Riding
2:50 My Health Limitations
5:10 Listen Twice Before Offering Advice
6:08 What is ME/CFS?
7:05 The Body Battery Analogy
9:15 A Redlining Nervous System
10:06 The Push and Crash Cycle
10:45 Pacing
12:00 Doctors Say No More MTB
12:51 This is a Learning Journey
13:42 Why I Want to Keep Riding
15:40 Feeling at Home in the MTB Industry
16:26 How Often Can I Ride?
17:46 Feeling Like I Don't Belong
18:55 Goals for This Series
20:42 Hypotheses About This Learning Experience
24:40 Conclusion/Summary
Inspiring, thank you!
I picked up mountain biking 3 years ago (I’m 47 now), back then I got diagnosed as pre diabetic. I made a choice to better my health, now, I’m 34lbs. lighter and DIABETES FREE! Keep teaching and inspiring. God is good, God Bless, Steve!
You're inspiring dude - I have MS and it's always inspiring to see other folks with chronic issues still getting out there and getting after it the best they can.
Steve, you are an amazing strong person. Your ability to learn and transfer you knowledge is inspiring. I wish your body overcomes this illness. Be well!!
I am watching this video in a hospital bed. Last Thursday I had my bladder removed. I was riding extremely well until Chemo and now surgery. I am getting back on a bike. I love MTB but I my EMTB allowed to ride through chemo. Steve your journey is yours. I love your new bike with Stanton.
wishing you the best of recoveries!
Thank you for sharing your story Steve. I can totally relate! After open heart surgery and a subsequent less efficient heart an e-bike was a God-send! He who has made us can fix all the pieces. Believing images of victory!
Thanks for sharing your faith. Praying for you bro!
Even though it’s so hard sometimes, biking gives us peace, happiness and stress release. Thank you for this video and sharing your story 🙌🏻
Dear Mr Big Brain,
I applaud you for sharing much of your challenges with your audience...
I've been a long time bike rider. Years ago during one summer I logged an average of 400 miles per week road biking. On different years on a ridged MTB I might do 100 miles in a week. I had been always been active and competitive in different sports.
I like some in you audience have developed mobility issues. It started with chronic pain that started in my hands years ago. Typing and using a mouse can exaggerate my pain. As a work around I now use a mouse with my left hand. More recently my feet now have developed chronic and acute pain. Going down stairs, stepping off a curb or going for small walks can be very painful. I can't take aspirin or Ibuprofen for relief. Prescribed pain relievers cause digestive issues.
Having physical limitations is frustrating. Fortunately for me I now own a pair of pedal assist only electric bikes. Both have no throttle, but give me the boost allowing me to get a good workout and yet mitigate the pain penalty for being active. Recently, I was getting an irritation in my right hip and knee. The fix that I found was switching to 155mm crank arms. I'm short, so I'm thinking that my previous 170mm cranks were the wrong size and the root cause.
Final note, for some reason many people have negative reactions to e-bikes. Many of the naysayers have never ridden an e-bike and yet call e-bikes cheat bikes. That's okay with me, I'm able to get out, feel the wind on my face and log 20 miles or so. For me biking has been such a huge part of my life. Having e-bikes available allows me to continue to be out under the sun and enjoy the freedom of motion.
I am so sorry to hear of your health challenges, that's rough. I applaud your resilience and tenacity to keep finding ways to enjoy this sport.
Great insight about crank length, I too feel like shorter cranks have helped me a lot.
I'm so glad you've found a way to continue riding despite your health challenges.
@@BigBrainParty I don't drink, I don't do drugs. Biking is my addition, biking is my therapy. Biking more for my brain than my body.
@@BigBrainParty Part of the aging process. I've heard getting old is not for wimps.
You are an inspiration
An E MTB is possibly the answer, all that matters is that your riding again, forget what small minded people think. I remember that video you posted riding an E MTB you where simply having a good time. "Live to Ride, Ride to Live" its all that matters the mental health benefits of just riding outweighs everything, good luck :)
Best wishes, dude - I appreciate you having a healthy conversation about all of this. I'll continue cheering for you to do what you enjoy.
You're an inspiration Steve ❤
This is awesome, I have fibromyalgia and and am looking at starting mountain biking. Until I got my diagnosis and subsequently medication for it, I never thought I would be able to do something like that. Your story is more motivation for my to keep with my goal.
I am so sorry to hear about your fibromyalgia, that's no joke. We have a lot of overlap with our symptoms. Wishing you success
@@BigBrainParty Thank you for your response! Honestly it was videos like yours that made me want to get into mountain biking. More specifically your videos made me want to try to get a Hardtail. Still saving up the money.
I’m sorry this happened to you man. I miss hardtail party ride videos. You have a talent for describing an experience. And I could listen to the videos at work and mtb vicariously through you. Hopefully you can figure something out.
I love the attitude Steve 🙏
Looking and sounding good Steve. You'll get through this. Your content is the best!
I am continuing to stand in agreement with you for God's grace and complete healing for you.
I myself love the outdoors and could not imagine giving up cycling. I use to snow ski and backpack, but cycling, both road and mtn biking are the only hobby I have kept doing. I think what cycling does is take us back to when we were kids w/o any responsibilities and riding your bike was this magical escape. Even when I have a bad day, getting out on the bike seems to allow me to just escape the bad, even if it's just for a moment.
Keep up the good work and take care of yourself and the family.
Also love cycling. Road during 70’s..pioneered Mountain Bikes from early 1980’s in the U.K. Amazing times. Past 15 years STILL riding,thank the Lord. Road,Mountain Bikes,Gravel.. After all these years am actually only beginning to appreciate what I have. Also a practicing Christian..again thank the Lord. Please check out Dr Sarah Myhill..and her work with people suffering with Chronic Fatigue Syndrome and M.E.
Thanks so much for sharing this with us. I hope that we can use your story to help us work through whatever obstacles are in our way to continue living our lives in the fullest way possible.
It takes a lot to share such a personal issue!!! We are here to support you and remind you your health and family comes first!!! No matter how the channels evolve you got the support from us. Hopefully you can overcome this over time and for now all you can do is try and stay healthy feel better. Your positive mindset and faith will keep you going!!! Appreciate the videos Steve and thank you for sharing your journey!!!
Hi Steve, you are one of the reasons I enjoy biking as much as I do, your honest reviews and technical aptitude are second to none.
As I was watching this video thinking of ways that I would try to continue biking in your position I thought it would be cool if you could add electronic Drive train to non-bike mountain bikes, ie Canfield tilt😉, etc.. It’s just a thought, but adding battery motors, etc. for the video and then take it out on the trail for testing would be fun to watch. Whatever you do, I’ll continue to support by watching and praying for your health.
Thank you for sharing your story! E-BIKE Time! Use mid level assist to have fun then use the boost mode to get you back home when your energy starts to drop. I just got a Turbo Levo because I have Multiple Sclerosis and heat is a big factor for me, does the heat seem to drain your “battery” more than cooler days? I am willing to brainstorm or talk with you if you want.
Wonderful, thanks for commenting and sharing your experience Gene! Ibis sent me an Oso when they heard i was sick. I look forward to experimenting with it more
not 3 days ago I was thinking about you and how you're doing with you illness. Here is the video. WOW
❤❤ keep being you 🔥🔥
Thank you. These challenges are helping me to become a better version of myself.
I wish you nothing but good wishes . Have been watching you and your wife from the start . I have had Lupus since 1990 and the good days are good and the bad days really suck . I hope you are able to find that balance and still be able to ride .
Oh man, I'm sorry to hear about your Lupus, that's rough.
Thank you Steve for sharing your story. This video couldnt have come at a better time. I have recently lost vision in one eye. I am trying to find ways to keep riding on familiar trails, slowly and safely, as long as can.
Im so sorry to hear that albert. I have a patron who had vision problems and lost his depth perception. It made riding technical trails fast extremely dangerous and difficult for him. I'd love to hear about the ways you work through this in the future
Love ya friend!
Thanks, it's great to hear from you again.
We're not alone fellow Christian. Keep at it and share your wisdom!
The afflictions of the righteous are many , but the Lord delivers us from them all !
One word, sir: tandem!
Joke aside, blessings on your journey! I'm looking forward to finding out the conclusions to your hypotheses
Hey bro
Health issues suck
Glad u have a diagnosis
Praying for you and your family
I have type 1 diabetes. Not too bad but have to watch my weight, injuries, blood tests during the ride and take lots of sugary snacks and drinks 🥤 on a ride to manage it well
I now have an insulin pump and now can ride up to 3 hours
I can’t afford an ebike but enjoy riding at bike parks and shuttles and even take a 29er tube and a tow rope on group rides so I can get a tow from my ebike bros
I had an amazing ride on a gt avelanche hardtail at skyline bike park Rotorua with another dad and those cheap beginners bikes are amazing 🤩
Maybe chilled out downhill Mtb bike packing 🤔 where u do a point to point trip with stops on flow or river trails \\ in a small fun group
Bike packing with no tent ⛺️ and just a small fannny pack and airbnb it 🎉is fun 🤩 and chilled out. Each airbnb is a food stop and phone charger 🔌
Zinc really helped me
The way you describe the whole body’s handling of the fight or flight response resembles a lot of things our neurologist and therapists have told us about my 9yo daughter in regards to her anxiety. Not the same overall issues mind you, but just quite a bit of what you described sounds familiar.
I hope you find some strategies that can help you cope or overcome this.
Have the dr.s ever mentioned if this is a condition that one may develop over time or if it’s likely something that starts at a younger age?
With or without you riding I’ll keep watching your content it’s been very interesting overall. I do hope that you are able to continue riding while doing it of course ;)
Hang in there, find comfort in your faith, and know that you have a large support structure here
In my research I've come across a few teens struggling with the same thing, but most are adults
🙏🏼
Im no where near you as far as disability but I have been fighting pain in my hips for 4 years while riding through it. I ride one day and I'm out for a week. I'm doing everything I can to get better and it is slowly working but I have to say the Ebike has been a life savior.
Im so sorry to hear that.
Thank you for sharing this. I think it would be cool to see you interview Leo Rodger.
I have so much respect for Leo. He's so positive and upbeat. Ill look into habing him on
@@BigBrainParty He really is, from what I've seen & heard. Plus, That would be cool!
Hi Steve! I’m a NICA coach in WV and also have a chronic illness! In 2023 I was diagnosed with Chronic Regional Pain Syndrome (CRPS) after a MTB crash in 2020 and knee surgery following about 5 months later after 2 rounds of PT that wasn’t making me better.
After surgery, I never got better. I went 3 years in terrible pain in my left knee. Swelling, 9 knee aspirations, medications, bloodwork, skin discoloration, extreme temperature changes of my left leg, I mean the most excruciating pain I have ever experienced. Anytime you would like to talk, or hear how I am still struggling with my “new body” and trying to still ride, be a working mom, and just “survive” when you have chronic nerve pain, physical symptoms, mental illness due to the depression and isolation that naturally happens when you can no longer be as physically active as you were in the old body. It’s nice to know there are fellow NICA coaches out there, dealing with a chronic illness that hidden. I “look fine” but I wake up every day with relentless pain, deal with pain flares, and still carve out a life that is purposeful and fulfilling. I did the round robin of seeing doctor after doctor, bloodwork, CT, MRI’s, XRays and still having no diagnosis. I finally found a great medical team at Cleveland Clinic, a diagnosis, and a treatment plan that is still evolving and changing depending on the time of year, how my body is responding, and trying new treatments as chronic nerve diseases are NOT studied enough and there aren’t a lot of answers and treatments out there. A lot of my treatment are ideas that we “try” for chronic pain patients. And as you have probably figured out, what works for the person next to you with the same diagnosis doesn’t work at all for you! 😂
Hit me up, I’d love to chat and help other cyclists who have life changing health diagnoses and injuries, specifically those with chronic nerve disease and chronic pain conditions.
Thank you so much for sharing this Mia, id love to chat more and possibly feature your story on this series.
Hi Steve, never give up, never surrender, but accept the limitation. I have accepted mine and i know, i can ride for some hours, but then i'm done (age, diabetic, autoimmune disease). I do not count kilometers or anything else or try to be a racer. Most times i ride alone, just me and the nature around me. As you are good connected with framebuilders, give them a task-> a hardtail-e-bike that fits you an your limitations. You've advertised them for years, maybe now, they might give something back to you? Wishing you all the best. Regards from Germany🖖
I have a lot of connections and concerned friends in the industry. I feel like hardtails are still a bit rough on my body. I think it's going to need to be FS soon.
Chill group ride for us People with chronic health issues would be awesome. Hope you set this up someday. Even if we don’t heal our bodies in this lifetime we got new bodies on order in the next. Keep looking up brother. Isaiah 40:31👊
Where are you located?
@@BigBrainParty kingman az
Kingman ax
I am type one diabetic and think your motivation is great. My stupid suggestion is gravel bikes for MTB riders lol. I love both, who knows
I definitely intend to experiment with gravel bikes more. Thanks for the suggestion
I think if you find a full fat ebike to much and draining cause of the weight for your terrain I would recommend a Pivot Shuttle SL or levo SL would benefit you greatly!
I'd definitely like to experiment with some of the lighter weight options.
Hang in there, Brother. As a fellow Christian I believe with the Lord's grace and mercy you will get through this. In the end you will have gained all this knowledge that you can help others overcome their issues similar to yours, not just with mountain biking but other activities as well.
Thank you so much. I can feel Him shaping me through this.
When you say joint pain is it like sometimes you’ll wake up with your knuckles and maybe an ankle or elbow hurting seemingly randomly? Or was it in conjunction with a bike ride like you biked a ton one day and your joints felt overused or injured for days after? Any insight would be appreciated, I’m trying to figure some things out.
Every morning, whether i ride or not, I have a ton of joint pain. If i ride, i also have joint pain during the ride, and more pain after
I would gladly give some % of my battery so you can do a bikepacking with Cody ♥️
Maybe ill just hook the tow-whee up to him and he can tow me everywhere
hang in there steve.. i can’t wait to ride with you again. speaking of effective tools, would a super lightweight mtb be a little more effective? it just seems like a super tight bike would be better super efficient … just a thought
That'll definitely be one of the experiments i conduct, it may very well be as effective or even easier than an ebike. We'll see...
Have you ever done a review on Vassago titanium bikes? It’s in your neck of the woods. 😊
Ive ridden a couple but i never filmed reviews on them
Best my friend and prayers to you. Curious if they have suggested Hyperbaric oxygen therapy
My buddy Kyle Warner suggested it as a possible treatment for me. It's out of the budget right now but id like to try it one day.
Be gentle to yourself, soften the ride, use full suspension!!
Steve, I know you said not to do this, but your symptoms sound a lot like what I have: hypothalamic dysfunction. Even if that's not what you have, the compound hesperidin may be helpful. It comes from oranges. Please look into it and try taking it. I take 1000mg/day. Most doctors don't know about this compound and its extreme healing powers.
I haven't been diagnosed with MECFS but can partially relate.
One thing that helped me a lot (by coincidence because I lost a lot of weight due to the different illnesses I've had in the last few years) is losing weight. Since then I have realised that carbs are not my friends and try to keep them to a minimum. Bread of course, but even rice and potatoes. Any carb makes me feel weak again. I feel at my best when eating just salads, veggies, fruits and meat. The lesser weight has the added benefit of being easier to pedal uphill or doing any movement at all.
Maybe this could hep you too?
As a fellow believer, I would love to hear your faith perspective on this and what you feel like the Lord is doing through all this. I know this video was not the place (timestamp 8:17), and I don't know what the place would be, but I think it would be cool to hear what the Lord is doing in you and through you during this time in your life.
I share some of my religious thoughts over on instagram @steveinsedona . I dont go into my illness too much on instagram, a lot of that is pretty personal. When i do share lessons learned, it's usually in 1:1 situations with close friends and family.
From time to time I'll share it with my church congregation as well.
carnivore. try it.
5:26 i appreciate the desire to help fix me.
You mention a possible psychological component to your illness. Have you heard of or tried pain reprocessing therapy? I know you don’t want unsolicited medical advice but I feel compelled to mention it since my story is very similar to yours. It’s not something the average MD would know anything about. None of my doctors did. I just kind of stumbled upon it while desperately trying to find some relief. It’s given me my life back
No, I haven't heard of it. Ill look into it, thanks