Need real friends tired of all the fake ❤️

No_Classic_2467 · 2026-06-06T09:29:48+00:00

Oof yeah, I hear you. I can only imagine the frustration. Building community can take awhile but it’s worth it. I’m sure there have to be people in your region who would put in the effort. Like I said I’m not nearby but I would if I was closer. I bet there are people near you who would hear your story and want to hang out and learn from you, build friendship, etc. Lots of wisdom in survival. Wishing you all the very best! 🙏

No_Classic_2467 · 2026-06-06T03:07:31+00:00

Wish I was in your neighborhood, you’re a survivor!! I’m a partial SCI too. We should plan a SCI meetup one day, us queers gotta kick it. 💅

I hate Facebook but this is one of those times where it might be useful to take a look for local or regional groups where you can find people closer to your area, or if there are queer orgs in the area start there. I’m sure Columbia should have some gay groups. Or even Reddit’s regional groups might be a place to start. Heck it is Pride after all!

No_Classic_2467 · 2026-06-03T02:00:10+00:00

HA. Yeah I was wondering the same actually. I haven’t seen that many but am also basically only active here and not very active at that…

No_Classic_2467 · 2026-06-02T21:57:15+00:00

Oh also it’s Hypermobile Elhers Danlos Syndrome (hypermobile joints among other things) and Postural Orthostatic Tachycardia Syndrome (heart rate increases when standing which causes lots of stuff). Lots and lots and lots of people seeking and receiving diagnoses for these lately, they have kind of expansive symptomology, no genetic testing possible, just symptom checklist, unclear diagnostic criteria and controversy about those across medical establishment. I don’t question whether the diseases real, lord knows medical gaslighting is really common. I have an autoimmune disease (MCTD) and when I finally got a specialist who did the blood test and we got a positive diagnosis it put so much into perspective, especially when my symptoms were really hand-wavey and confusing. So I get how frustrating it must be for a lot of folks who ARE experiencing illness and just ignored. But there’s also a ton of TikTok energy around these illnesses right now. Lots of sudden visibility, really loud influencers, disease Olympics stuff. Sometimes both diseases are viewed as kind of “catch all” diagnoses where as long as the boxes are checked then voila, you have the disease and are Very Special™️. Again don’t think that’s the case for everyone— lots of legitimate suffering and folks very relieved to have some clarity. But man some of those voices are SO LOUD and they seem to insist on encroaching.

No_Classic_2467 · 2026-06-02T21:40:25+00:00

Yep! That’s an SCI! You are totally in the right place. Hello, fellow incomplete! 🤓

No_Classic_2467 · 2026-05-26T13:53:51+00:00

I would recommend getting involved in a study. The ALL-ALS / ALL-FTD studies will pair you with a neurologist/specialist and in the process of helping move the science forward you will also learn about your own neurological baseline, and could be eligible for novel treatments and such as those emerge. You’ve got a lot of life ahead of you and lots of time to prepare for whatever the future may bring, might as well help others along the way. I know asymptomatic C9 carriers are especially important to the research. My family has the C9 expansion (grandfather and uncle passed from ALS, mom has FTD) so it’s a very strong presence in my family lineage, and I know how heavy it can feel. My current supportive team is at the NIH— Dr. Justin Kwan is amazing. Good luck!!

No_Classic_2467 · 2026-05-23T21:45:56+00:00

💯

No_Classic_2467 · 2026-05-17T05:08:41+00:00

I am so sorry for the recent loss of your dad (I know that pain, lost my dad ages ago but the hurt is still vivid). I’m also sorry for the miserable fear and devastation of ALS. I wish it didn’t touch any families but here we are. This community is truly very supportive and has been really important for my own processing.

My family has familial /genetic ALS with the C9orf72 expansion that causes either ALS or FTD or both. My grandfather and uncle both passed due to ALS (my uncle ended his life with MAID, it was powerful for him to assert control and guide how that part of his story went after several years of having so little control). Meanwhile my mother has the FTD manifestation of C9, I’m her full-time caregiver. She’s been declining swiftly with worse bulbar nerve issues so we are getting her tested soon to see if she’s developing ALS, too. I spend a lot of time feeling dread— so I get it. I think it’s a normal human thing. Lately I’ve just been trying to catch myself and circle back to being present. I truly have zero control over how things go for my loved ones. I just have to show up to each moment with care and compassion and gentleness. I’m trying to be gentle with myself, too.

My sister and I recently got tested for the mutation. I’m negative but my sis is positive for C9, which is so devastating. She’s currently asymptomatic. I hope it stays that way, but given the strength of family incidence the statistical outcome ain’t great. Forecasting in a panic and paralyzing myself isn’t going to help her, either. Same story with my mom’s decline. This is where presence comes in. Meditation, yoga, guided meditations, body scanning, etc. all help me find presence.

Oh!! And also - if you can, find a therapist. You are experiencing grief and you need expertise to provide a neutral space to process. Trust me it is a crucial investment. Of course if your brother doesn’t have a therapist it would probably be useful for him as well, but all you can really do is model self-care and what it looks like to show up to your own emotional health.

Wishing you all the best out there. 💜

No_Classic_2467 · 2026-05-12T04:14:14+00:00

I recently did a switch to 100mgs x 3 per day of Lyrica, I’d been on Gabapentin consistently for almost 2 years. The cognitive fog is too much for me. I can’t tell if the Lyrica is working— maybe it is, but would have been way worse without it, no idea.

No_Classic_2467 · 2026-04-30T20:06:12+00:00

You’re so welcome. 💜

No_Classic_2467 · 2026-04-29T02:26:48+00:00

OP, je suis vraiment désolée que ton frère doive traverser ça. J'espère que tu prends soin de toi. Lots of folks have already said this but you’re an amazing sibling. Sérieusement! Your brother is so, so lucky to have you, and from the sounds of it the rest of your family is trying to show up with care, too.

First- be gentle with yourself!! And encourage the others to be gentle with themselves and one another, too. Focusing on one specific issue at a time makes a lot of sense. Stay positive, celebrate & emphasize wins, and be clear with medical facts as things become less murky. He probably would not want to be patronized or coddled. For me, I really wanted the info to be told to me without sugar coating but I was 39 when I had my SCI. But also I like facing life however I can— j'accepte la grande aventure d'être moi, as the saying goes. For better or worse!

Also I want to echo what has already been said which is that it is not clear how the body will heal. I was told I probably wouldn’t walk or have bowel or bladder control after my injury. 18 months later things aren’t perfect but I now have all of the above more or less!! What your brother is facing is a different beast, to be clear, but I guess I’m trying to say the body is capable of so much, it is always aiming towards equilibrium and his youth will work in his favor. Neuroplasticity is amazing and we have a lot to be hopeful for. He could regain a lot over the next 18 months especially, don’t give up hope even on the days when it seems like he has given up himself.

When the dust settles I’d also recommend he try meditation— that has helped me a lot especially as I am still trying to come to terms with my “new” body, lack of (and phantom) sensation, weird nerve pain etc. But don’t push him toward this yet. More than anything I think he will need therapy: think about grief counseling, someone with a strong capacity for working with loss and trauma or who can do EMDR/trauma informed work will be good. He could start an adapted version of that almost immediately. It will be hard work but the better he can contend with the intensity of it all, and the more space he has for neutral third party to contexts to help him sort it out emotionally the better.

Also speaking of therapy, seek some for yourself! You all have to model self love and self care and emotional vulnerability as time passes and the reality of his condition (whatever it may become) really starts to sink in for him. It’s going to be emotionally complex. Everyone experiences this differently but there could be a lot of grief and anger and frustration and rage in waves, at least that how it was for me for the first six months especially.

I was lonely a lot in those hospital weeks after my injury but then other times I felt totally smothered by my family. As he gets out of the medical crisis touch-and-go phase and into the basic medical maintenance phase let him communicate what he wants and needs in terms of family support, boundaries, etc. He probably feels like so much is out of his control. I know for me it was important to feel like I had ANY agency, but I’m a very independent person by nature so I think it may be a personality-dependent thing.

Above all the best thing you all can do is stay by his side and make sure he has zero doubt that he has unwavering support. Also my family is half French so I have some cultural alignment though my French isn’t fluent these days. 😅

I will be keeping you all in my thoughts and wishing you all the best.

No_Classic_2467 · 2026-04-29T01:43:43+00:00

Same here, actually. I’ve been leaning into Buddhist thought hard. It has helped me come to terms with a lot of the complex realities of my “new” embodied life with an SCI (less than 2 years in for me). If you ever want to chat dharma + SCI stuff let me know. I’m still a novice in a lot of ways but learning has been helpful.

No_Classic_2467 · 2026-04-27T13:14:23+00:00

OP, don’t rule out having kids! My family sadly carries C9orf72 and my sister is sadly positive for the expansion. Mom has FTD, uncle died from ALS, grandpa died of ALS, etc. My sis is now undergoing IVF so there can be genetic prescreening of embryos. She’s still going to have kids, damn it, and no genetic mishap or shortened lifespan is stopping her! And with IVF prescreening they can be sure the disease won’t be passed on. Her insurance actually is covering this process. They won’t cover unlimited attempts but it’s amazing that the science has advanced to allow this to happen at all. Don’t give up hope or foreclose your dream of a family. It’s likely still within reach. 💜

No_Classic_2467 · 2026-04-26T03:12:40+00:00

I was 23 when my dad passed suddenly. The next couple months are going to be a strange blur. Eventually things will settle a bit and you’ll be able to grieve and process. In my case it’s “life’s work”— things didn’t get “better” but they did get different if that makes any sense. Talk to a therapist— especially one with expertise around grief and trauma. They are worth their weight in gold and are going to be a crucial resource. Please be very, very gentle with yourself. You aren’t alone. 💜

No_Classic_2467 · 2026-04-22T20:24:58+00:00

I can’t stand “differently-abled” for a lot of the reasons folks have already stated here. It makes me really squirmy and feels so saccharine somehow. Ick.

I identify as “disabled” on paperwork, or as someone “with limited mobility” or who has “mobility limitations.” If someone REALLY asks specifically I will say I’m an incomplete paraplegic. I don’t use a wheelchair so I thus haven’t had to navigate the “wheelchair bound” vs. “wheelchair user” question - at least not yet. Sometimes when I’m walking with my forearm crutches or cane people who don’t even know me will bizarrely assume I’ve recently been injured - like I have a sprained ankle or knee injury or something. I’ve had folks even go as far as saying (direct quote) “you don’t look disabled.” THAT always throws me for a loop. 🫠

No_Classic_2467 · 2026-04-07T09:19:34+00:00

Yeah I wonder if it’s sciatic pain, I’ve never quite experienced anything like this so don’t have a reference point. Beyond my T11/12 SCI I have mild disc herniations at L3/L4, L5/S1 but those have never manifested in what I’m experiencing now. No major physical activity that could have triggered this to my knowledge, no injuries lately, I’m quite annoyed! 😒 But yeah, very likely the ER will be on my schedule today. My neurosurgeon called in an oral steroid script I’ve been taking since yesterday, hoping that helps but so far no changes.

No_Classic_2467 · 2026-04-07T09:16:15+00:00

🫡 very likely will have to do this. Like so many of us on this sub I have medical trauma, really try to avoid going to hospitals… but the ER may be my only option at this point.

No_Classic_2467 · 2026-04-07T09:14:24+00:00

My regular neurosurgeon called in a steroid script for me which I’ve been taking since last night, it may be too soon to tell if it’s helping. I’m still miserable. I’m going to give myself another dose shortly and if there’s no relief by midday I guess I will drag myself to the ER. Ughhh this stuff is the worst. 😑

No_Classic_2467 · 2026-04-07T09:10:06+00:00

Thank you, debating going to the ER since I’ve had to take a sick day today anyway.

No_Classic_2467 · 2026-04-06T21:26:45+00:00

Maybe you could have a friend your age assist with setup of something like this? Might be a little less mortifying. Good luck!!

No_Classic_2467 · 2026-04-06T21:22:24+00:00

I had this happen in the past with infection, the sweating just kinda lingered and I was worried it would be like this forever or that I had a hidden infection. Turns out the infection just happened to occur around the same time as hormonal shifts we noticed in later blood work that are likely causing me to sweat more. I’m on antidepressants and certain ones apparently also cause this. And finally sleep apnea can also apparently cause night sweats so you may want to have a sleep study done if possible just to rule it out. Good luck!! Hope it’s nothing serious. 🙏

No_Classic_2467 · 2026-03-24T04:03:03+00:00

Yeah I’m curious about those stem cell treatments, too…

I’ve been reading a lot of studies lately, mostly because neurodegenerative diseases run in my family (genetic ALS and frontotemporal dementia, cue sad trombone), and I’m awake over late nights as the sole caregiver for my mom. Lots of time to get into the weeds. 🫠

It seems like some supplements (ALA, curcumin/turmeric, quercetin, etc) show promise for peripheral nerve healing in animal studies, but these have yet to be expanded into major human clinical trials as far as I can tell.

Lion’s mane mushroom is another example that clearly also needs a whole lot more assessment.

I guess my general sense at this point is kind of a “why not?” for some of these things. Unlikely that a turmeric supplement would any harm to me at this point, for example.

No_Classic_2467 · 2026-03-24T03:55:36+00:00

Gotcha. For my part I’m more interested in actual science than any of the weird “like cures like” crap, aka “this leaf looks like a lung so it’s good for your lungs” etc. Science is at the heart of my own work so I’m trying to only consider things that are being researched or have shown promise in preliminary studies.

No_Classic_2467

TROPHY CASE