On ECT for PLS

[Guest guest]

I know that the article about ECT was reported here earlier but there

was a long discussion on it on the old Braintalk. I have had some

contack with the Hicoks (Greg Hicok got the ECT) and Dr. Freeman who

gave the treatment. It sounds promising and I would like to post

more later as I get more information. The old Braintalk forum does

take a few minutes to load. The newer one is not so bad.

http://neuro-mancer.mgh.harvard.edu/ubb/Forum3/HTML/005423.html

http://brain.hastypastry.net/forums/showthread.php?

t=9343 & highlight=ect+hicok

[Guest guest]

Does the ECT mentioned mean the electro convulsive treatment??? Thanks

Roy

Wayne wrote:

I know that the article about ECT was reported here earlier but there

was a long discussion on it on the old Braintalk. I have had some

contack with the Hicoks (Greg Hicok got the ECT) and Dr. Freeman who

gave the treatment. It sounds promising and I would like to post

more later as I get more information. The old Braintalk forum does

take a few minutes to load. The newer one is not so bad.

http://neuro-mancer.mgh.harvard.edu/ubb/Forum3/HTML/005423.html

http://brain.hastypastry.net/forums/showthread.php?

t=9343 & highlight=ect+hicok

[Guest guest]

Yes. I encourage anyone interested to click on the links. The 2nd

link seems to wrap on my computer so I have to copy and paste it to

the link bar at the top instead of just clicking on it.

In short, a PLS patient (Greg Hicok who is named in the article) got

ECT in mid 2003 for his depression which is one of its old uses.

However, unexpectedly, his symptoms of PLS vastly improved. He was

using a motorized wheelchair. Now he walks with a cane and walker

and continues to receive ECT once a month.

His doctor is a neurologist Dr. Freeman in Michigan. I was

given the number for him and at the beginning of this year, his staff

(receptionist), told me that he was working on organizing a trial for

a few PLS patients to try it. HOWEVER, when I called back a couple

of times, they told me that they hadn't really made any effort in

that direction and that they can't offer it to other PLS patients for

PLS because that could get them in trouble (I assume sued or maybe in

trouble with the FDA, I don't know).

I also contacted the MDA and they were not interested either, saying

it was only a one person case and told me that I should find a doctor

who was willing to do it if that is what I want. I asked if they

would even want to converse with Greg and they said no. I love our

orgs, always going the extra mile!

Personally, I have no idea whether this would be applicable to

others. Some researchers I've talked to thought that it was the

curing of the depression that caused the reversal. However, the

Hicoks told me that Greg had been in a wheelchair for years and that

his depression didn't start till later. I've read about a LOT of ALS

patients getting " better " on various things but I believe that most

are the placebo effect. This case is one of the few that seems to be

both a significant effect and long-lasting, about a year so far. So

in short, if someone else wants to try it, they need to find a doctor

to do it on their own. And their doctor should contact Dr. Freeman

in Michigan on what procedure that he used. Apparently, from

what I've heard, ECT can be done different methods.

Wayne

> I know that the article about ECT was reported here earlier but

there

> was a long discussion on it on the old Braintalk. I have had some

> contack with the Hicoks (Greg Hicok got the ECT) and Dr. Freeman

who

> gave the treatment. It sounds promising and I would like to post

> more later as I get more information. The old Braintalk forum

does

> take a few minutes to load. The newer one is not so bad.

>

> http://neuro-mancer.mgh.harvard.edu/ubb/Forum3/HTML/005423.html

>

> http://brain.hastypastry.net/forums/showthread.php?

> t=9343 & highlight=ect+hicok

>

>

>

[Guest guest]

ECT is not to be taken lightly. It is well documented that ECT is

associated with memory loss- temporary for some but permanent for

many. Complaints of " fuzzy " thinking also have been registered. Right now

ECT is for severe depression that does not respond to

medication. Generally folks are almost catatonic or are suicidal. I

suspect that it will be really hard to find a doc who will do ECT for

PLS. Lavon

[Guest guest]

Hello Lavon,

Thanks for the information. I'm afraid that you are right. And I

also think that this is possibly tragic. I've corresponded with the

patient (Greg) and I'm convinced that he really did have a pretty

major long lasting reversal. I have no idea though whether it is an

oddity due to his depression or whether it is simply symptomatic

relief for stiffnes or whether something in the CNS system has

actually improved. I don't know. He doesn't know. His doctor

doesn't know. The ALS researchers don't know (and a few have

followed his case). No one knows why it happened.

Meaning the ONLY logical thing to do is for some doctor or research

group to try this on others to confirm or deny the original patient's

reversal. But other factors come into play and its very likely that

no-one will retry Gregs experiment for years. And if it turns out

that it really is a treatment for PLS this will be a huge tragedy

mainly for us.

> ECT is not to be taken lightly. It is well documented that ECT is

> associated with memory loss- temporary for some but permanent for

> many. Complaints of " fuzzy " thinking also have been registered.

Right now

> ECT is for severe depression that does not respond to

> medication. Generally folks are almost catatonic or are suicidal.

I

> suspect that it will be really hard to find a doc who will do ECT

for

> PLS. Lavon