Trigger Warning: Carly Fleischmann Update

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Adamantium
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05 Dec 2014, 9:15 am

This story really bothers me. It's hard to work out exactly what the elements of this reaction are but

I am sort of thinking that she was doing really well and they hurt her badly and put her through a terrible experience in the name of "curing" a problem... Was this something that needed a "cure" or maybe just living with?

I have no idea and maybe it's wrong even to speculate. Maybe there was some really painful, dangerous or destructive aspect to whatever it was this extreme disruption of her nervous system was supposed to treat. But I sort of think that when you are in the hands of medical people, you trust their expertise and often don't have the background to evaluate the advice they are giving you or make the choices they offer you.

I wonder if the doctors were really thinking "first do no harm" or "this will give some interesting data" and was the desired outcome something she really needed? Or something to make other people more comfortable around her? To make her parents feel she was more normal? Maybe it's unfair to even speculate this way. I just think of the videos I saw of her before, often seeming happy and seeming to express complicated thoughts fairly directly... and then see this cry for help and it seems something terrible happened.

I have personal experience of how hard it can be to make medical decisions as a parent. I have been presented with a bewildering array of options from multiple teams of specialists when my child's life hung in the balance and each team presented the options from the perspective of their specialization. I have had to sign waivers for dangerous procedures to be done to myself. I can see that this could have happened in many ways. Still, it seems very wrong.

My sense of ECT is of a procedure with little understood effect that originates in a darker time in medical history, back in the era of drugstore lobotomies and sidewalk x-ray machines. I have read several accounts of terrible experiences with ECT in the 1960s and sort of thought of the procedure as a thing of the past.

I hope the damage is reversible. I hope this gives them pause before they do drastic things to her. I hope it wasn't about "curing" stims.

My thoughts about this aren't very coherent yet, but I wanted to express them. I just keep thinking about it.



vickygleitz
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05 Dec 2014, 9:28 am

I just read a post from carlys' mom on Carlys' FB. Apparantly the decision was made by Carly alone...that a doctor had convinced her that ECT would help with OCD. I Initially was so angry at Carlys' family but all they did was honor their [adult, responsible to make her own decisions about her life] daughters wishes.

I pray for Carly. I pray for her family.



Adamantium
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05 Dec 2014, 9:59 am

vickygleitz wrote:
a doctor had convinced her that ECT would help with OCD


Thanks for this update, Vicky. I guess the question is why did this doctor think it would help and did he give her a realistic warning of risks?

It is so hard to make decisions about medical treatment. You have to rely on the advice of the experts and they see things through the distorting perspective of their personal histories, interests and specializations and present that as objective fact .

When my son was d]to life, we got completely contradictory advice from three teams of specialists. Each team basically advised that we do what they specialized in because it might be of some benefit. Each told us there were serious risks, but downplayed the risks of their procedure and indicated concern about the risk of trying any of the other approaches.

I hope her situation gets better and isn't too painful or distressing.

[edited to add]
Ther is is an interesting piece about ECT that discusses OCD at the NIMH site:
NIMH discussion of ECT



nca14
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05 Dec 2014, 10:26 am

It was due to OCD? What a form of it she had?



LokiofSassgard
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05 Dec 2014, 11:26 am

I would be suing the doctor then. I mean, what gives him the right to convince this to her? She's lost her ability to communicate for godsakes! I would be getting a new doctor if I was in her shoes. Wouldn't it be considered malpractice? I get that maybe he thought it would help her, but... ugh. It just makes me so very mad right now. I really looked up to her because she was changing the face of autism and inspiring those who struggling. It's always been something I've wanted to be able to do myself.


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whatamess
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05 Dec 2014, 11:32 am

I don't buy Carly's mom's explanation. Sorry, if Carly wanted to move away from home, if Carly wanted to do 1000 other things, they would say "she's not capable of making that decision". From the very beginning her family to me has been about "curing her" because "they can't live with her"…There are many ways to help someone with OCD, STIMS, etc. one of which is "some darn peace and acceptance".



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05 Dec 2014, 11:44 am

LokiofSassgard wrote:
I would be suing the doctor then. I mean, what gives him the right to convince this to her? She's lost her ability to communicate for godsakes! I would be getting a new doctor if I was in her shoes. Wouldn't it be considered malpractice? I get that maybe he thought it would help her, but... ugh. It just makes me so very mad right now. I really looked up to her because she was changing the face of autism and inspiring those who struggling. It's always been something I've wanted to be able to do myself.


When I was in a psych outpatient day program, there were many people there after they were finished with their ECT treatments.

ALL and I mean all had short term memory issues.

Supposedly it goes away, and I think doctors gloss over that fact, and it is hard watching who couldn't remember squat.

I have never hear it used for OCD. All the people I meant were suicidally depressed before the ECT. I have meant people who had it for psychotic manias.

I have never met who's OCD was sever enough to consider it.



LokiofSassgard
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05 Dec 2014, 11:58 am

whatamess wrote:
I don't buy Carly's mom's explanation. Sorry, if Carly wanted to move away from home, if Carly wanted to do 1000 other things, they would say "she's not capable of making that decision". From the very beginning her family to me has been about "curing her" because "they can't live with her"…There are many ways to help someone with OCD, STIMS, etc. one of which is "some darn peace and acceptance".


^ I agree. Why? Because for starters, I've read her book. I don't know her mom very well but... her dad? omg... don't get me started on him right now. I do think Carly was influenced into doing it, so I believe that. I read up on ECT, and the only way it can be done is if the patient agrees to it. The patient has to sign some form stating they agree to doing the treatment. Carly was influenced by someone either by her parents or the doctor to do this. She wouldn't do it unless she was encouraged to do so. Carly will fall for anything. I'm not saying that to be rude to her or anything, but she's the type of person you can influence and encourage rather easily.

Tawaki: She does have pretty severe OCD. However, I agree because from what I've read... ECT is for those with even worse things then OCD. I agree with a lot of people here who have said that there are better things out there. Now, this poor girl has no way to communicate her needs anymore.


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05 Dec 2014, 12:27 pm

I wonder if it was Carly's decision to have this. First I hear the parents were talked into this and were convinced this was a good idea but I don't know. Now it sounds like I am reading here it was Carly's decision. I just say do your research first. I wonder if they did already and still went with it.


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Swiper
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05 Dec 2014, 12:41 pm

League_Girl wrote:
I wonder if it was Carly's decision to have this. First I hear the parents were talked into this and were convinced this was a good idea but I don't know. Now it sounds like I am reading here it was Carly's decision. I just say do your research first. I wonder if they did already and still went with it.


I seriously doubt that Carly made the decision on her own. I suspect that both the parents and the doctor talked her into agreeing to the treatment.


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Jono
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06 Dec 2014, 12:12 pm

Swiper wrote:
League_Girl wrote:
I wonder if it was Carly's decision to have this. First I hear the parents were talked into this and were convinced this was a good idea but I don't know. Now it sounds like I am reading here it was Carly's decision. I just say do your research first. I wonder if they did already and still went with it.


I seriously doubt that Carly made the decision on her own. I suspect that both the parents and the doctor talked her into agreeing to the treatment.


That's pretty sad. I wonder who talked her into it.



LokiofSassgard
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06 Dec 2014, 7:33 pm

I just found the post from her mom:

Quote:
Tammy Starr This is Carly's mom. Thank you Carrie Lueker for your kindness and to all of you who have expressed your concern and support. As for those of you who are judging,I can't say I blame you and Facebook is the worst place for this sort of information. I am not going to share all the details behind Carly's decision. It was her choice and she made it completely independently. I do hold the Dr responsible who was so convincing to her about how it would help her OCD but that is another issue. Her posting only tells part of the story. The last thing we need are 160,000 opinions but that is the lovely thing about social media...so thank you to those who have shown grace and love.


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06 Dec 2014, 7:41 pm

I hope, she is going to heal up again. What a dreadful period this must have been for her. Don´t ever do this to such a vulneral human being.


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timtowdi
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07 Dec 2014, 2:52 am

ect has been refurbished as a sort of wonder-cure for depression in some parts of the psych community, and they tend to have the hammer approach (if you're a hammer, everything looks like a nail). The medical propaganda on ect is no different than the medical propaganda on anything else -- it's great, it works, it's got limited side effects, it's not like the 1960s, etc. If you do the research you find out that not only are there short-term memory losses about important things, but in some cases the memory never fully returns and brain function never really goes back to normal. Also any benefit from it tends to fade within months and then you're right back for the shocks again.

Usually it's recommended when a person is severely depressed and nothing else is working. Not because the docs are so clear on what it'll do but because it's a thing to try. They wanted to do it to my ex-husband but it sounded insane. Nobody knows how brains work really and drugs are enough of a sledgehammer.



nca14
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07 Dec 2014, 7:41 am

The "ECT case" is sad. They should not do it. Especially for someone lke she. But Carly is very inspiring person.



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07 Dec 2014, 10:29 am

Swiper wrote:
"i cabnt typerc anymmyore ectt didfd thisds to meed brayiin is scrrammbellld needdc fdocttor helphgfi" - Carly

"This is carly's dad. all is fine. carly had ECT in march. since then she's been unable to type or go on FB. tonight has been the first words we'e heard from her since April! we're all with her and her doctor is on the case! thank you all for your kind words, prayers and concerns. this is actually a joyful time!"


I feel so bad for Carly. I think her Dad is a self-absorbed jerk. In the videos he shows a complete lack of understanding of autism and a disrespect for Carly. She actually asks for help in her post! I can't imagine how awful it must be for her to be trapped insider herself with her father as her care giver.