A reintroduction

[Prot]

Hi, My name is Tim. At one point, a good number of years ago, I was a regular poster here. I'm 67. I have dxes of schizoaffective, ASD(Asperger's). Psychiatric patient since 1973. ASD dx 2019.
Physical= Barrett's oesophagus, atrial fibrillation,premature osteoporosis,lymphoedema, very mild scoliosis. Mobility is reduced due to 2 falls in Oct 2021. Still get pain , despite having a hip replacement. An unknown amount of damage was done through paramedics and a GP claiming the pain was 'psychological'. Took till 7 weeks later to get suitable transport and help to get out of my flat to be x rayed. That revealed I'd broken my femur.

Also total aphantasia and very probable dyspraxia( mentioned by several (mental) health professionals, but never officially assessed and diagnosed. I experience what my care coordinator calls 'bullying related trauma' . I'm very anxious + socially anxious.

My interests are quizzes and tests from playbuzz type to high range IQ tests, genealogy including DNA cousin matching, reaction speed tests, mental health/illness,and politics.

[agate]

Welcome back, Prot!

I recall your user name but am glad you provided some information about yourself. Having to wait 7 weeks before finding out you had a fractured femur sounds pretty bad. I had a similar experience with a fall involving my back, and I found out only months later that I must have fractured a vertebra. It is possible to break a bone without realizing it but in the meantime the person is probably having considerable pain.

I suspect you're probably trying hard to avoid any more falls.

You mention difficulty getting out of your flat. Is transportation a problem?

Maybe some puzzles and quizzes can be found for Braintalk. Unfortunately many gaming Websites aren't the safest places to be in terms of Internet security but there are some. Some people on the MS board were playing with games like Wordle a while back, for instance, and links to several of them were posted.

Just let me know if word games like that are of interest to you and I can find the links.

[flatcap]

Hello, Prot! Welcome back to BrainTalk.

I am also in my 60s and have ASD. My ASD was finally diagnosed in 2017. I also have MS and Parkinson's. I am isolated as a result of my ASD, but one does the best one can. Coming here to the BrainTalk MS forum helps.

It sounds like you have traveled a rough road when it comes to healthcare. So much depends on luck. It is hard to find the right providers, and you never know what you will get until you show up at the clinic, sometimes not even then.

If you're thinking about hanging out here at BrainTalk again, you should visit the MS forum. It is by far the most active. We have a monthly chit-chat thread where you can post anything you want. It does not have to be MS-related. New threads on various topics other than MS also pop up. Hope to see you there.

[houghchrst]

Welcome back Tim!!! I remember you!! I am glad to see you back. I'm usually in the Emotional Support group area and mental health groups but I am considering joining the MS group because it's hoppin' even though I don't have MS.

Really hope you stick around.

[flatcap]

Hello, houghchrst!

Glad you found this place after the recent changes.

[Prot]

Welcome back, Prot!

I recall your user name but am glad you provided some information about yourself. Having to wait 7 weeks before finding out you had a fractured femur sounds pretty bad. I had a similar experience with a fall involving my back, and I found out only months later that I must have fractured a vertebra. It is possible to break a bone without realizing it but in the meantime the person is probably having considerable pain.

I suspect you're probably trying hard to avoid any more falls.

Yes- very much so. Over 2 years since the hip replacement and I still experience pain if I stand up or move about for too long. Luckily I've got a rollator with a seat I can sit on. But judging when the pain will come isn't easy. Outdoors I'm very wheelchair bound. My 'daughter' and 'granddaughters' are planning to take me out when the weather improves. The aim is to take me most of the way in the car to have a drink and something to eat in a cafe, and the last little bit using the rollator.

You mention difficulty getting out of your flat. Is transportation a problem?

It is to some degree. I wouldn't risk going outdoors on my own because of the fear of more falls. My 'daughter' and 'granddaughters' do take me out , but have jobs and young children to look after. Moving to be near them was the best thing I've done. I was asked many times and kept saying 'no' because I was fearful of change. Being told they planned to knock the block of flats I was living in,that persuaded me to move. My 'daughter' arranged everything including talking to mental health services here, and putting things straight re some falsehoods that my then mental health services had about me.[/QUOTE]

Maybe some puzzles and quizzes can be found for Braintalk. Unfortunately many gaming Websites aren't the safest places to be in terms of Internet security but there are some. Some people on the MS board were playing with games like Wordle a while back, for instance, and links to several of them were posted.
Just let me know if word games like that are of interest to you and I can find the links.

Thank you.I had been doing Wordle, but stopped doing it. I may go back to doing it. I'm far better at word games than at other types of games.

[Prot]

Welcome back Tim!!! I remember you!! I am glad to see you back. I'm usually in the Emotional Support group area and mental health groups but I am considering joining the MS group because it's hoppin' even though I don't have MS.

Really hope you stick around.

Thank you. I hope to do so. I left because Braintalk had become a shadow of its former self. I had indeed forgotten about it, until I got the email re the url.

[houghchrst]

yes I miss the days when it was hopping. Some of us diehards refuse to let it go. It is our home away from home. I remember a time it was almost like messaging. You could post something, come back ten minutes later and you had responses. I refuse to leave though. I originally found it in the late 90s then forgot about it just to come back 2 or 3 years later and have been here ever since.

[Prot]

I first posted on Braintalk circa 1998. A lot of members were lost in a change to new forum software. I posted a good number of informational articles, which had some people accusing me of being a spammer. The reality? It was the best way that I knew how to be helpful. Moderation had got right downhill by the time I stopped posting on Braintalk. I signed up for this version of the forum in 2008. Didn't post much, because I wasn't liked. Last post before these recent posts was in 2018.

[Prot]

Hello, Prot! Welcome back to BrainTalk.

I am also in my 60s and have ASD. My ASD was finally diagnosed in 2017. I also have MS and Parkinson's. I am isolated as a result of my ASD, but one does the best one can. Coming here to the BrainTalk MS forum helps.

It sounds like you have traveled a rough road when it comes to healthcare. So much depends on luck. It is hard to find the right providers, and you never know what you will get until you show up at the clinic, sometimes not even then.

If you're thinking about hanging out here at BrainTalk again, you should visit the MS forum. It is by far the most active. We have a monthly chit-chat thread where you can post anything you want. It does not have to be MS-related. New threads on various topics other than MS also pop up. Hope to see you there.

I was dxed with ASD(Asperger's) in May 2019 at the age of 62. It wouldn't have happened if I'd stayed where I was. My belief there was more going on than SMI was repeatedly ignored. It took 7 months after seeing the pdoc here to be diagnosed. That's very quick by UK standards.

[agate]

I found Braintalk in 2001, and it was still the active place houghchrst remembers. Once or twice I looked back into the archived versions of the earlier Braintalk, back when it looked very different, more like just a chatroom, and things were very wild back then, apparently.

[flatcap]

If remember right, this forum once had something to do with a university in Boston or thereabouts. I don't know when that tie was broken or why.

[agate]

Back in those far-off times people often referred to it as "MGH." This place had a connection with Massachusetts General Hospital, though I'm not sure it was a very strong connection. The man who was in charge then may have been doing the IT work for the neurology department at Mass General and used his office and computer(s) to run Braintalk. There were some major outages back then and people began drifting away, and the guy at the helm seems to have gone on to pursue other interests.


At some point the MGH connection faded out.

My memory of this could be very wrong. Maybe someone with a better memory can correct this.

[flatcap]

I thought it was a university, not a hospital. So much for my memory. Thanks for straightening me out on that.

It would be nice to see a crowd come in and set this place on fire again, but I fear that won't happen. The forums are mostly inactive, which I think probably puts off new visitors from signing up. In addition, social media has taken a big bite out of forums like this one in general.

At least the new URL/site comes up on Google. Anyone searching for a place like this will see it near the top of the list. Hopefully, some will join us.

[agate]

MGH is part of the vast Harvard University hospital system:

Only registered and activated users can see links., Click Here To Register...

Also, the prestigious New England Journal of Medicine has some connection or other with MGH, and every issue includes a section "Case Records of the Massachusetts General Hospital."

So Braintalk was riding along for years on the coattails (or whatever) of the MGH prestige, but somehow that connection faded into oblivion. It probably never was a very strong connection but some users here thought it was--or hoped it was.

You're right, flatcap--Braintalk is coming up on Google searches now. (The other day it wasn't, for me.) I searched for "neurology message boards" and Braintalk was at the top.

I'll try to keep a more careful eye on the New Posts section so as to be able to say a few words to new people. I hope others here will find a little time to do that as well. We can create the impression of being still alive and kicking around here.

[Virginia]

Hi Prot my name is Virginia and I have MS. I found BrainTalk in 1999 and I am one of the ones who thought it was founded and kept up by Massachusetts General Hospital. This was the only forum I had really spent any time on. I would go in and read occasionally on another one, but it was here that I found a home. There were some very helpful people on here back then but we still have some.

I loved the forum when I first joined, but when it got a little smaller I liked it even better. I have met a lot of friends over the years. Now it is down to just a few of us and we would love to have some people come join us. As has been brought out I think social media has taken a number of people over the years. However, this is where I call home and plan to stay as long as the lights are on.

We would love to have you join in on the MS forum. I post mostly on the chit/chat thread, but enjoy it when someone starts a new conversation. You definitely do not need to have MS to be there. We talk about everything. You are obviously going down a rough road. It does sound like you have great support in your daughters and granddaughters. However, everyone has their own life and most people have to work.

Please feel free to join us at anytime.

[Prot]

Thank you. Here is a lovely little video re the benefits of knitting that some of you might enjoy.

Only registered and activated users can see links., Click Here To Register...