Using Ebikes As Tools For Meeting a Health Challenge

Stunning bike! Glad you are kicking ass!

I've been really beat up at the end of this summer. We're near the end of body-boarding season, so I'm really hoping to get in another 5 or 6 days, but I am absolutely destroyed after just 35 minutes (and about 7 or 8 rides) in small (two feet high) but powerful surf.

Be careful with your back. In New York, on my 23ish-pound 1974ish Raleigh Competition, I really screwed up my back just from riding 20-40 minutes every other day for a week or so. The dropped handlebars were a bigger transition than I realized.

Best of luck with the new treatment! Sending positive energy your way.
 
Regarding the photo in your original post: Many here may not realize that the mountain in the background is not Mt. Baker, but Mt. Shuksan. Mt. Baker is out of sight to the right of the picture.

There is an image of Mt. Shuksan, looking across Picture Lake, that is seen in outdoor shops all over America. It is over 9,000 feet in elevation, and is not volcanic (unlike Baker, which puts on a show of steam every so often).
 
With MCTD, I sometimes get that post-exertion crash, but usually I don't-- it's either physically neutral or a net positive.

I wonder what kind of story she may write 10 or 15 years after diagnosis.

In particular, if we consider diseases mediated by immune dysfunction, I wonder whether it's possible for patients to reach a state of equilibrium somewhat like mine, where exercise only produces a crash 20-30% of the time, and only half of those actually 'set you back' -- cause you to miss a day of work or skip an event. I do have days like that, but they are rare.

What's maddening is that generally-- maybe 60% of the time-- I can 'work in' to a flare and actually kind of chase it away, and other times it makes it worse, and it's impossible for me to identify what's different on the days that exercise makes things worse. I can track diet, sleep, medication usage-- no correlation with anything.

I wonder if part of the problem is that humans are driven to see things in polarities, to focus on a single causal factor, and that we have a wild, irrational drive to understand systems in black and white terms. The idea that a physical condition might still be beyond our understanding, that there are so many variables in our immune system that we may never unlock its mysteries, is intolerable to us. Therefore, we surrender to black-and-white thinking: Exercise makes it worse! Exercise makes it better! One older psychiatrist I really respect remarked ruefully in his blog that anecdotally, rheumatologists and psychiatrists seem to have the highest rates of mental health issues because their specialties deal with ambiguities. Few biomarkers, no clear-cut answers.

One reason that I love body boarding at my home break is because it's so humbling. Two foot waves that look like they are nothing can break your neck if you are not vigilant; you really have to react on instinct in the moment, to remain fiercely alert and accept how little control you have. Only then can you relax, and listen to the animal voice somewhere way back on your brainstem that tells you to pull up the nose of the board at the last minute, and let that wave go by.

I think this may become much more important as we deal with the health care implications of Long Covid, as well as CFS, lupus, MCTD, RA, etc. What's the best advice for patients? Do we tell them to avoid strenuous exercise under all circumstances? Or do we tell them to take small, calculated risks and try to build on their success?

Probably, the answer is a mixture of both depending on the type of disorder, and stage of the illness. I know after my trip to New York, something told me to cut back to 80 minutes of exercise a week, to dial back the resistance on the elliptical, combine that with lazy quarter miles of breast stroke, and limit rides to under 5 miles with ample assistance. Even then, I did overdo it, and I missed one appointment-- but only one.

Now, I'm back up to 130 minutes a week and 10 mile rides. For another patient, maybe that equation might be very, very different-- and perhaps early in the course of this kind of illness, the crashes last months at a time, and even minor amounts of exercise cannot be tolerated.

But here I am, trying to make meaning and find order where perhaps none can be found.
 
Catalyzt said:
I think this may become much more important as we deal with the health care implications of Long Covid, . . What's the best advice for patients? Do we tell them to avoid strenuous exercise under all circumstances? Or do we tell them to take small, calculated risks and try to build on their success?
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I continued to ride 70 miles/week through covid19, 137 days of it 2020 and 51 days of variant this August/September. I did limit my peak pulse rate to 144 compared to 168 I allow when I'm healthy. Cardiologist blocking my shoulder surgery at the Floyd Cty hospital 2018 told me never to go over 200-age, which is 129 bpm. Shows what doctors know.
YRMV. I've been exercising aerobically since the Army started me in 1968. Was weekend biker & walked home from school with 40 lb books+instrument before that.
Seeing interviews with long covid patients on the news, I think the depression etc should be addressed by getting out & walking.
 
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Spring 2022 Update -

Well it was a tough winter. Sarcoma is a persistent form of cancer, rarely cured. In November, shortly after I started participating in the investigational study for a new immune therapy, a new tumor grew in my leg and one of the metastasis in my right lung grew rapidly. The one in my leg hobbled me and the one in my lung started producing fluid that filled my right pleural space, effectively compressing and shutting down the right lung. I was hospitalized twice, put on oxygen, confined to a wheel chair to get around and spent most of December and January laying in bed and gasping for air. I lost 35 pounds (210lbs. down to 175 lbs.), at least 20 pounds of which was leg muscles. If not for Nancy's tireless and constant care, I likely would not have made it.

Radiation therapy was started on the tumors in the lung and leg In January, which amazingly shrank both tumors. I had a surgery to clean out the pleural space, giving my right lung room to expand again in late January which resulted in a major improvement. Since then, it has been a slow but steady improvement. I have been forcing myself to eat in an attempt to regains some of the lost weight and have gained back 12 lbs. I started working out on the indoor bike in early March to make sure the regained weight will be muscle. My lungs are working properly again, and I have finally returned to riding my ebikes this past week after 4 months. I am now back on chemotherapy to keep the other spots in my lungs from doing the same thing. It is working thus far.

Before I got sick in November, I was riding mostly in Eco, sometimes unassisted and even riding an acoustic bike (non-ebike). Starting back in I am riding in Turbo or Sport, using more assist to get restarted and rebuild my musculature and endurance. This week I rode all but one day and completed a 20 mile ride. In the depth of my illness, when I though I might not make it, I contemplated selling my bikes as it felt like I might never ride again. I am grateful that I waited to see.

I am coming back strong right now, riding every day it isn't raining and hope to keep this momentum going. Once again, the ebike is the right tool for the job of restoring my fitness and vitality.

What long strange trip it's been.

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Alaskan said:
Spring 2022 Update -

…

Before I got sick in November, I was riding mostly in Eco, sometimes unassisted and even riding an acoustic bike (non-ebike). Starting back in I am riding in Turbo or Sport, using more assist to get restarted and rebuild my musculature and endurance. This week I rode all but one day and completed a 20 mile ride. In the depth of my illness, when I though I might not make it, I contemplated selling my bikes as it felt like I might never ride again. I am grateful that I waited to see.

I am coming back strong right now, riding every day it isn't raining and hope to keep this momentum going. Once again, the ebike is the right tool for the job of restoring my fitness and vitality.
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you are an absolute inspiration! if anyone deserves some epic satisfying rides with tailwinds (in both life and on the road) it’s you! thank you for sharing.
 
Alaskan said:
Spring 2022 Update -

Well it was a tough winter. Sarcoma is a persistent form of cancer, rarely cured. In November, shortly after I started participating in the investigational study for a new immune therapy, a new tumor grew in my leg and one of the metastasis in my right lung grew rapidly. The one in my leg hobbled me and the one in my lung started producing fluid that filled my right pleural space, effectively compressing and shutting down the right lung. I was hospitalized twice, put on oxygen, confined to a wheel chair to get around and spent most of December and January laying in bed and gasping for air. I lost 35 pounds (210lbs. down to 75 lbs.), at least 20 pounds of which was leg muscles. If not for Nancy's tireless and constant care, I likely would not have made it.

Radiation therapy was started on the tumors in the lung and leg In January, which amazingly shrank both tumors. I had a surgery to clean out the pleural space, giving my right lung room to expand again in late January which resulted in a major improvement. Since then, it has been a slow but steady improvement. I have been forcing myself to eat in an attempt to regains some of the lost weight and have gained back 12 lbs. I started working out on the indoor bike in early March to make sure the regained weight will be muscle. My lungs are working properly again, and I have finally returned to riding my ebikes this past week after 4 months. I am now back on chemotherapy to keep the other spots in my lungs from doing the same thing. It is working thus far.

Before I got sick in November, I was riding mostly in Eco, sometimes unassisted and even riding an acoustic bike (non-ebike). Starting back in I am riding in Turbo or Sport, using more assist to get restarted and rebuild my musculature and endurance. This week I rode all but one day and completed a 20 mile ride. In the depth of my illness, when I though I might not make it, I contemplated selling my bikes as it felt like I might never ride again. I am grateful that I waited to see.

I am coming back strong right now, riding every day it isn't raining and hope to keep this momentum going. Once again, the ebike is the right tool for the job of restoring my fitness and vitality.

What long strange trip it's been.

View attachment 118605View attachment 118606
Click to expand...
Good news Alaskan! Here's to a full recovery and Eco mode again soon.
 
Alaskan said:
Spring 2022 Update -

Well it was a tough winter. Sarcoma is a persistent form of cancer, rarely cured. In November, shortly after I started participating in the investigational study for a new immune therapy, a new tumor grew in my leg and one of the metastasis in my right lung grew rapidly. The one in my leg hobbled me and the one in my lung started producing fluid that filled my right pleural space, effectively compressing and shutting down the right lung. I was hospitalized twice, put on oxygen, confined to a wheel chair to get around and spent most of December and January laying in bed and gasping for air. I lost 35 pounds (210lbs. down to 75 lbs.), at least 20 pounds of which was leg muscles. If not for Nancy's tireless and constant care, I likely would not have made it.

Radiation therapy was started on the tumors in the lung and leg In January, which amazingly shrank both tumors. I had a surgery to clean out the pleural space, giving my right lung room to expand again in late January which resulted in a major improvement. Since then, it has been a slow but steady improvement. I have been forcing myself to eat in an attempt to regains some of the lost weight and have gained back 12 lbs. I started working out on the indoor bike in early March to make sure the regained weight will be muscle. My lungs are working properly again, and I have finally returned to riding my ebikes this past week after 4 months. I am now back on chemotherapy to keep the other spots in my lungs from doing the same thing. It is working thus far.

Before I got sick in November, I was riding mostly in Eco, sometimes unassisted and even riding an acoustic bike (non-ebike). Starting back in I am riding in Turbo or Sport, using more assist to get restarted and rebuild my musculature and endurance. This week I rode all but one day and completed a 20 mile ride. In the depth of my illness, when I though I might not make it, I contemplated selling my bikes as it felt like I might never ride again. I am grateful that I waited to see.

I am coming back strong right now, riding every day it isn't raining and hope to keep this momentum going. Once again, the ebike is the right tool for the job of restoring my fitness and vitality.

What long strange trip it's been.

View attachment 118605View attachment 118606
Click to expand...

Wow Alaskan, I have been wondering how you were feeling.
Yes, so very glad you are back in the “saddle”.
 
Alaskan said:
Spring 2022 Update -

Well it was a tough winter. Sarcoma is a persistent form of cancer, rarely cured. In November, shortly after I started participating in the investigational study for a new immune therapy, a new tumor grew in my leg and one of the metastasis in my right lung grew rapidly. The one in my leg hobbled me and the one in my lung started producing fluid that filled my right pleural space, effectively compressing and shutting down the right lung. I was hospitalized twice, put on oxygen, confined to a wheel chair to get around and spent most of December and January laying in bed and gasping for air. I lost 35 pounds (210lbs. down to 75 lbs.), at least 20 pounds of which was leg muscles. If not for Nancy's tireless and constant care, I likely would not have made it.

Radiation therapy was started on the tumors in the lung and leg In January, which amazingly shrank both tumors. I had a surgery to clean out the pleural space, giving my right lung room to expand again in late January which resulted in a major improvement. Since then, it has been a slow but steady improvement. I have been forcing myself to eat in an attempt to regains some of the lost weight and have gained back 12 lbs. I started working out on the indoor bike in early March to make sure the regained weight will be muscle. My lungs are working properly again, and I have finally returned to riding my ebikes this past week after 4 months. I am now back on chemotherapy to keep the other spots in my lungs from doing the same thing. It is working thus far.

Before I got sick in November, I was riding mostly in Eco, sometimes unassisted and even riding an acoustic bike (non-ebike). Starting back in I am riding in Turbo or Sport, using more assist to get restarted and rebuild my musculature and endurance. This week I rode all but one day and completed a 20 mile ride. In the depth of my illness, when I though I might not make it, I contemplated selling my bikes as it felt like I might never ride again. I am grateful that I waited to see.

I am coming back strong right now, riding every day it isn't raining and hope to keep this momentum going. Once again, the ebike is the right tool for the job of restoring my fitness and vitality.

What long strange trip it's been.

View attachment 118605View attachment 118606
Click to expand...
Good on ya mate! Impressive, and way to make a comeback!
 
I just found this post
Best wishes on your recovery
You have inspired me to keep my tandem recumbent bike for now I was going to get rid of it because I didn’t think I would be able to safely ride it again balancing both myself and my wife on it ever again
I have had to have 1 surgery after another for the last 3 years and I’m looking into getting ebikes to try to get back into riding after my next surgery in a couple of months
with what you have been able to do I don’t feel as bad about myself and my situation
Thank you for sharing and inspiring people like me Alaskan and the others here hopefully I will start riding again this late summer to fall and eventually get strong enough to get back to riding our long rides on our tandem
 
I am sad to have read the trial by fire you walked through over the entire winter. Your absence (sincerely missed here by many for your opinion, your spirit, walks in these digital pages and always will) made me suspect you were undergoing some kind of battle and I believe it was Ravi who informed us you were not feeling well.

Your latest post has brought smiles and fist pumps from all here. Keep them coming, when you can. That smile in your photos says it all! We live in a distorted reality where too many people make overpaid basketball, baseball or football players or actors into some kind of heroes we are supposed to adore and emulate. Bollocks to that. The real heroes are the good hearted working people from all walks of life who are forced to step over their own rubicon and yet, have the will, the luck, the humility, the courage, to step back.

Looking forward, with anticipation, of your Spring 2022 ride reports, @Alaskan! :)
 
Alaskan, I understand, and share your pain. I've been battling cancer for 14 years now, after receiving a diagnosis of stage 4 pancreatic cancer on a Friday just before 4th of July weekend. Turns out not all pancreatic cancers will kill you quickly...but it's still a roller coaster, with three surgeries over the years, a DVT, a treatment failure after the "latest" "highly successful" treatment (which did a number on my blood counts and kidneys....), a failed clinical trial experience...a constant sword over our heads - what will the next scan show?

Yet we continue on, and our bikes are a great release, aren't they?
 
Great to hear from you, Alaskan! Like the others here, I, too, had missed your posts, and am very glad to hear from you.

I actually read your post a couple of days ago, and it really inspired me. My latest diagnosis is nothing serious, in the scale of issues we're talking about here-- bilateral rotator cuff syndrome and osteoarthritis-- and I left my doctor's appointment feeling a bit glum. Just another turn of the screw, no idea whether these two issues are related to the connective tissue disorder, no clear instructions, prognosis, or treatment plan. My rheumatologist was actually really irritating: "I'm going to retire, so I can bodyboard and bike like you do!" (Yeah, I'll believe that when I see it. Doesn't seem like the kind of guy who's very good at playing hurt, but hey, I would love to be wrong about that, hope he has a great retirement, if his bedside manner has decayed this much, maybe it's time for him to hang it up anyway.")

Anyway, I left the appointment feeling listless and sorry for myself, determined to stop doing everything until I was certain everything was completely safe... sit quietly in my office with my hands folded and wait until I felt much worse, maybe eating a few worms for good measure... not bother pushing for scans and tests and good PT and sports medicine...

And then I read your post and thought, "Or maybe I'll try door number two = not feeling so damn sorry for myself" and had my first ride over 10 miles in about six weeks, about 12 miles and 1,700 feet of vertical.

So, thanks! Your posts always help me get my ass off the couch and back into the saddle. Boo-ya!
 
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