Jonathan
Forum Replies Created
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I think it’s a good grant for patients to try to earn. Personally, I’m not (currently) interested in recumbent bikes, but I might change my mind in the future.
My main exercise goals are to improve heart function (i.e., stamina and endurance), strength, mobility, and mental fortitude. Obviously, those goals seem vague, but there’s concrete steps involved. Anyway, the purpose of those goals is to be a better husband and father. Those jobs are usually demanding — well, for me they are.
For recreation, though? I dig the idea of grappling, like jiu jitsu or wrestling. I have wanted it for years and years. The idea of testing myself against (or at least resisting) another human being trying to strangle me seems…like a clear way to learn about how much capability is in me, my body, and my mind.
But I don’t have much time for that, so I just spar a bit with my 11 year old a few times a week. And, yeah, I day dream about rolling on mats with grown men.
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My feet and ankles — I HATE ‘EM. I’m trying and trying and trying to strengthen ’em with certain exercises. But braces might be a good plan B.
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I didn’t know what a standing frame is, so I googled it. Link below. Seems good.
My backbone finally healed (again) a few weeks back, so I can do standing exercises again. Basically, while seated, I grasp onto support in front of me, position my feet, stand up, and then return by butt to my wheelchair. I’ll repeat this exercise with varieties of tempo and maybe a few extra small movements. I’ll also hold the standing position for 1-2 minutes. The purposes are to move blood and joints, improve heart function, and exercise the motor planning piece of my brain. Obviously, there’s other benefits, but those aren’t my aim.
For me, the standing frame isn’t necessary. I can fulfill my purposes with out it. In fact, it might (for me) provide too much support, which would slow progress towards my aim (i.e., if it’s too easy, change is unlikely).
Anyway, anything that gets you off your butt is a good choice.
https://www.rehabmart.com/category/standing_frames.htm#bottom
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You sounded great, sir. Well done.
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Burritos, bruh. They’re easy to handle and they’re filled with all the goodness! I also love lamb chops, but watching me eat ’em with my hands is kinda cringey and should probably be a show on the nature channel or something.
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I chose my job in this life. My aim is simple and clear. The purpose involves goals that raise my son into a strong, well behaved man. And I live to support, empower, and satisfy my wife. By “live,” I mean setting concrete goals that are reasonable, reaching them, and setting new ones. I think whimsical dreams are fun but not practical. In fact, they rob me of my focus. I kinda hate them.
When I’m in pursuit of my aim (on the offense or on the right path), I feel psychologically rewarded. And that keeps me going — even when there’s more struggle. When I’m not on the path (because I’m making bad choices), the opposite occurs. Guilt. Mental anguish, like anxiety and depression. Those negative emotions and states of mind make me less effective at my job. They’re subconscious signals, really…a warning that I’m off the path. But that topic’s for a different time.
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The guest on that episode Naval Ravikant expressed a lot of good ideas that reminded me of both Dr. Jordan Peterson and Jocko Willink.
YouTube link…
https://youtu.be/3qHkcs3kG44 -
I love dark humor. It’s medicine. And I think it’s origin is based on human nature. When people share dark or hard times together, it gives birth to a coping mechanism that might seem insensitive and callous, but the intent isn’t malicious. It’s to make difficulties a little more tolerable. It’s a relief. It’s for fun. And it’s almost like a badge of honor that reflects how far into hell you and others have been.
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Depending on your age or maturity level, your identity is ultimately based on your ability (well, a bit deeper than that, but let’s keep this simple). You’re gradually going to lose ability. Permanently. It’s gonna feel like you’re losing your identity. That’s gonna hit you hard and you’re gonna suffer a lot of mental anguish. I did.
Some newly diagnosed folks adopt the attitude that they’re a victim of circumstances beyond their control and they put life on hold until some other force beyond their control can rescue them (like a cure). Or they develop habits to help them escape their reality. I did that. But this approach only compounds your suffering and stunts your maturity.
Basically, you have to take control of your identity. Redefine it. Become an adapting machine. Don’t wait for a cure. That’s a trap. Adapt, accomplish, and live despite ataxia.
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Does he seem sad or bewildered?
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I’m like you, Frankie. Morning is better for me — especially after plenty of coffee. But since my ticker has been giving me issues, I try to be more cautious now by measuring my heart rate (HR) with an app on my phone. After I climb into my chair but before I drink coffee or take heart meds, I do 3 quick measurements. Any HR over 100 beats per minute (BPM) means I either cancel physical training (PT) or take it really easy. Twice I’ve ignored those warnings and twice my heart spiraled into failure.
Anyway, after coffee and meds (right before PT), I measure HR again with the app. Usually, it’s even better. After PT, like exactly right after, I measure HR again. It’s always over 100 BPM, but that’s expected. I eat a light snack and rest…maybe get 10-20 minute nap.
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It’s a good choice by FARA.
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I use a manual wheelchair in my home, or I crawl. Outside and in public, I use my baby. It’s a Pride Go-Go Elite Scooter. 4 wheels. Sporty-ish. No basket or armrests. Assembles and disassembles (by my wife) in less than a minute.
Link:
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Enjoy Italy! I used to live there (Napoli, Bari, Milano) and Sicily, too. Half my relatives still live there!
Plans? Always. Everyday, actually. Most of it isn’t exciting like taking a trip to Italy. But it’s got plenty of goals that keep me focused and psychologically strong.
1. Raise my boy along a path where he’s destined to be strong. This involves a lot of steps, but I’ll spare you the boring details.
2. Make my relationship with my wife tighter and stronger. We’re more like a team now, so I support her endeavors by at least handling logistics and offering advice. PLUS I GOTS TO KEEP MY BEDTIME GAME ON POINT, YO.
3. Physical training. Everyday. MANDATORY.
4. Get my house in PERFECT order. Finances, legal records, SOPs written for Gabe and Leo (in case I…am not there).
5. I want to keep learning about philosophy, psychology, and religion. I want to find old, useful wisdom that changes me into somebody stronger.There’s actually a long list of detailed plans in my personal journal. The path is set and I’m proud (and relieved) to be on it.
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My sweet tooth is dead. When I learned that FA pathology included a vulnerability to diabetes, I gradually eliminated sugar from my diet. Occasionally, I indulge in a sweet, but that’s rare. I definitely eat plenty of meat — the more fat, the better. I use my hands. It’s not a pretty sight, but I’m not trying to look pretty. Lamb’s my favorite. And pasta. And burritos. Basically, anything my wife cooks.
I should mention that, yeah, I eat a huge serving, but it’s only once a day. Sometimes I force myself to eat a snack because I don’t have much of an appetite anymore (until I smell what the wife’s cooking). I’m not sure why that is, but I suspect it’s due to habit.
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We’re not looking for an organization with pre-trained dogs because that undermines my purpose which is my son’s development. We found a local breeder. The dog will be raised and trained beginning about 8 weeks of age.
https://www.mittelwest.com/about/schutzhund-training-commands-for-german-shepherds/
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I plan to have a dog in our family later this year. Here’s the deets, yo:
1. Ultimately, he’ll belong to my son Leo. He’s been begging for one for a while. But before he has that responsibility, Leo’s got about 6 more months to prove he can consistently handle smaller responsibilities. Right now, he takes care of two tarantulas and a snake. Everyday. It’s amazing how gentle and compassionate he is with them. A real animal lover. Like his mom. Not me, though. I just tolerate animals and feign interest.
2. My wife Gabe is a serious dog nerd. She used to train schutzhund commands to German Shepherds. In fact, that’s the breed she wants Leo to get. We both want Leo’s dog to be trained not just for obedience and assistance but as a personal protection animal. And I want Leo to do the training. Basically, I’ll hire a professional dog trainer (or recruit a volunteer) to teach Leo how to train his dog. THIS IS WHAT WILL FORM A TIGHT BOND and build a sense of leadership in the boy. And when the two of ’em overcome dangerous situations together, THIS WILL BUILD ABSOLUTE TRUST.
3. Most of this will be costly, but investing in my son’s character development is a priority in my life. Besides, I have ways to minimize cost. With a doctor’s prescription that reads “poor Jonathan needs a service dog,” I can get reimbursed via health benefits from my former employer. So no real worries on that front.
I’m not looking forward to all the shedding because I crawl a bit on the floor. Well…actually, it means Leo’s gonna vacuum more often. So, good.
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I think it was around 2003 one night. It was dark and raining. Maybe a street light or two. I was “running” from police. It was so clumsy and difficult and scary. I was forcing the joints and ligaments in my lower body to absorb a lot of pain and damage. Fortunately, I found a decent hiding spot. I watched police give up the search. I was soaked and cold but relieved. That’s probably when I gave up being a street criminal. Yep. Mostly white collar stuff and high level organized crime after that…
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2 minutes is my max for now. After enough practice (maybe in 4 months), I’ll double it.
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Hahah, I’m not a guru. What I wrote is basically an old philosophical/psychological approach to life. I’m just passing on messages that seem useful to me. I’m more of a collector…or a treasure hunter. 😛
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Haha, I can be empathetic. It’s not my strong suit though. Anyway, my job is about duty. It’s responsibility. And it’s a rewarding way to live.
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Lead by example, sir.
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No. I don’t have much compassion. If dark humor hurts your mental health (UNPOPULAR OPINION), you’re weak. You need to visit hell more often and see yourself dominate it. That’s how somebody gets stronger. I expect people to aim for strength. Complaints annoy me because they’re worthless and drive a person’s spirit further downward. Also, they contaminate others’ spirits, which builds a setting that it’s okay to be soft. Soft people suffer more. That is the exact opposite of my ideal.
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Hahahah…