Hello @exitframeleft and thanks so much for writing - it's strange being the youngest isn't it? I certainly hope yours is a slow progression. Have you tried anything out that can help, especially with the walking? I am a fan of Bombas for socks and of Hoka OneOne sneakers... they look... kinda cool, but they feel like orthopedic sneakers, and the sole is nice and thick - helps to prevent falls. I've also found heat and rest to be helpful, as well as - prior to covid - things such as acupuncture and aquatic PT... These days things are looking pretty grim for me. I had biotech stimulator implanted at brainstem about a year ago, and I seem to be getting much worse much faster, from knees all the way up to hips and sometimes all i can feel is a small patch on my face. Fortunately I will be seeing my Neuromuscular neurosurgeon, the one who diagnosed me, this coming Thursday and I'll have a chance to talk more with him, prior to having yet another stimulator - biotech - placed in my spine. I'll do whatever it takes to get better or to prevent / slow down the progression, but I really hope for all our sake's that the right person - a powerful and multibillionaire person - ends up with this, so we can see more funding and research, and more HOPE.
Speaking of - I love to hear you're a photographer! My studio portfolio includes more videography and multimedia installation, new media these days, but of course i love photography as well. These days I am mostly in bed so I have gone back to drawing... I hope that you can find a way to keep employment even if it's editing photos or someting where you walk less... I've lost a few jobs in a row and have gone from six figures to nothing, and now I'm on a forced one year leave of absence from my PhD program before I can attend overseas qualifying exams. I know it's for the best but the funding is what was barely sustaining me and now I've found some contract remote work i can do from bed and at my own pace. I think it's really important we keep on working, and I completely identify with the release that creative expression provides!

If you are interested I'd love to get an Artist's Collective together for folks like us - with special conditions, heightened sensitivities, and the need for more time and patience in some instances.

I hope you're doing well too and thanks so much for reaching out! Please feel free to share your portfolio with me and I'm right here. You've gota few years on me but perhaps i've got a few more years diagnosis on you? diagnosed in 2018.

I so appreciate your message. Thank you so much, and be well - stay as healthy and happy as you can please !

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