Further Progression or Chair Complacency?

[SongStream]

I've been meaning to post about my recent difficulty in keeping up with my regimen on the treadmill and the overbearing concrete legs that makes walking so unbearable. Now that I have my Whill Ci, I am so elated to sink in its cozy chair and often talk out loud saying how "walking is overrated" as I venture and explore my surroundings. Now that I'm able to remotely drive it up a ramp into my car, I can go places without its disassembly. It's been a game changer. I still have dual mobility and still determined to maintain my walking abilities and independence. But now, I am quite confident and comfortable with my wheels. Just the other day, I met someone who founded the website wheelchairtraveling.com and her beau who I also met was instrumental in inventing the exoskeleton to have the disabled walk again. So exciting to connect with these individuals in my own home town in San Ramon! I guess I'm at a major transition in my life as I've been diagnosed with AMN for 20 years but had earlier symptoms years before and 40 years if you include Addison's disease. I guess I'm pondering about leading a purposeful life that includes advocacy for rare diseases and ALD/AMN. What really cinched this was today when a gentleman asked my congressman (who also was running in the 2020 presidential campaign) at a town hall meeting about the lack of funding for finding cures and treatment for his son's disease which is more prevalent than that which defines a rare disease. I feel that besides being our own advocate in the healthcare system, it's important that we advocate for ourselves and others in leading the fight for allocation of more funding to NIH, etc. It concerns me that other charities receive more funding for more common diseases. (Consider what I just wrote above my own musings since I hijacked my own topic. I guess one can say that complacency can be about settling in to our disease without taking action for change.)

[monkeybus]

Walking ain't overrated, staggering about probably is. Wheels are a means to an end.

I've said before, I go everywhere on one of these

myproscooter.com/best-adult...

My legs stand rigid with the old spasticity, so riding one is no bother at all. That and my bike.

I always hated walking, since long back. Exercising on a treadmill doesn't sound like my idea of fun, but you got stay active. Muscle tone, flexibility and range of motion. I'm a big fan of walking in a pool, or just stretching.

I suspect our disease is more common than people think. Plenty mis or undiagnosed. Factor in actual, bona fide celebrities with other diseases. Especially MS. Who has AMN/ALD? All I know is Lorenzo Odone.

I can't complain, I haven't given a penny to any AMN charity, though obviously I should.