Everyone please read.
My wife is currently "staying" at a psychiatric clinic and undergoing daily therapy to help eliminate the demons she "sees and hears".
She is there because after reaching the daily limit of 800mg of seroquil there was no change in her symptoms.
Her movement disorder neurologist working together with her therapist who is familiar with parkinsons and its related psychological side effects suggested this course.
During the course of the past week, nothing changed!!! When i was allowed to take my wife out for three hours saturday night she still repeated charges that were leveled before she began therapy. I was very saddened by this.
I called the therapist sunday to relay this and in a phone session he told me that he had conferred with the neuro and they both felt that since 175mg of clozoril was added to the daily 800mg of seroquil with only a minor reduction in the frequency of delusions, they felt that the only remaining course to take would be e.c.t (electro convulsive therapy)
Needless to say i went ballistic and stopped the conversation in its tracks.
I will not go into all the details here but I called an emergency meeting of the neuro and the therapist for this evening to discuss this new thinking.
I was told that eleven Parkinson's patients have undergone treatment and all have had VERY positive results. In addition to the elimination of the hallucinations, their PD symptoms were somewhat reduced as a positive side effect. PD meds were even cut back. Wow, this sounded good so far..
without emotion I questioned them up/down/front/back and when we ended My wife was willing to undergo this to improve this impossible situation.
I came directly here to the internet to learn whatever I could about ECT. The result;;;;;;;I now have two documents which I will use as criteria.
AFTER READING THEM....THERE IS N O W A Y I WILL PERMIT THIS PROCEDURE. To my CGiver family, I don't yet understand why this procedure is being suggested to me in the light of these public documents. Surely, the therapist (MD) must know about these very serious warnings. As for the neuro, he himself admitted he knew very little about it because it was not on his side of treating this disease. But he was present and without issuing any caveats to the procedure, I feel that makes him a direct party to the recommendation.
This is the first time in 15 years that I am so seriously upset by our medical "team" So again I say to you....BE CAREFUL TO ACCEPT OUT-OF-THE-ORDINARY TREATMENT WITHOUT VERIFYING IT FULLY. GATHER ALL THE INFORMATION AND DIGEST IT COMPLETELY. DON'T TRUST ANYONE BUT YOURSELF TO MAKE THE FINAL DECISIONS ON BEHALF OF YOUR LOVED ONES.
Oh yes, my question to you... HAS ANYONE HEARD TO ECT BEING USED TO TREAT A PWP'S DELUSIONS?????
My wife has had many ECT treatments over the years for depression. There have been no unwanted side effects that I have seen. Her most recent treatment was this past June and was in conjunction for delusions and hallucinations. It is my belief that it may have helped alleviate that situations somewhat. At the same time, her medications were being adjusted. The combination has not removed all of the hallucinations but at most times she is able to cope with them and realize that they are hallucinations.
Most of the "anti" material that I have seen deals with the cruelty of the procedure. The patient is anesthesized and undergoes no suffering. This is a great change from the early days when the convulsion would sometimes break bone. It is a very well controlled procedure these days.
If you'd like to try this, to go the NPF wwebsite or paste the following into your browser: http://www.parkinson.org/
Ask Dr. Lieberman, NPF Medical Director
Click on this, and follow the directions. You can then e-mail your concerns to Dr. Lieberman. He usually answers within 48 hours. I will be praying for you and your wife daily.
This website is maintained by the U. of Cincinnati, Case Western Reserve U., and Ohio State U. Among other things, you can ask questions of doctors in many specialties. Ask Dr. Arif Dalvi (Peter's neuro) about PD.
Click on the Ask an Expert section, then click on Parkinsons in the list of diseases. You'll get a brief answer in a couple of days.
Also: You can add another to this list: The Parkinson's Disease Foundation's website also has an Ask the Expert section. Most questions are answered within one business day while others may take up to two or three business days. The site's address is: http://www.pdf.org.
We had an excellent team at the time. Her neurologist was faculty at a teaching hospital well known for its surgical as well as medical approaches to treating PD, her psychiatrist specialized in geriatric psychiatry and routinely worked with her neurologist, and the hospital ward to which she was admitted was a geriatric psychiatry ward. So much for credentials. I do believe that I got a little double-talk, so I'd listen carefully for that if I were you. I was told about ECT's improving PD symptoms too, but when I pressed for details on how that worked, I was told that the treatment releases stored dopamine. It seems to me that wouldn't be much better than, say, an extra dose of sinemet for the PD symptoms.
Short answer: I do think ECT is worth considering, and you're right to research it as thoroughly as you're doing.
My late mother had many ECT treatments, on the advice of her neuro and her psychiatrist. She was in the hospital for about a month for the initial series because the treatments were done 3 times a week. (She was 75 or so yrs old at the time and in a NH.) Follow-up outpatient treatments were required every 2 months or so thereafter.
My research at the time (3 yrs ago?) indicated that ECT was gaining increased acceptance as a treatment option, particularly for the elderly, because it is a NON-DRUG method, and thus avoids the whole drug-interaction etc scenario. Mom's NH staff claimed a number of success stories, eg people being able to move from high to low levels of care after ECT. Her results were nowhere near that dramatic, but there was definitely improvement of Mom's paranoia, confusion, depression, etc. We could certainly tell when it was time for a follow-up, because all of the above were getting bad again.
It's true that there is increased confusion at first. There is also the repeated use of general anesthesia. There's the overall bizareness (sp?) of it all. But it's an option that merits serious consideration.
Mom's neuro was Dr. Raj Pahwa at the U of KS. You can reach him at RPAHWA@kumc.edu.
I'm happy to report to you all that my wife returned home today after her experience with ECT (electro convulsive therapy)
Everybody on the Psychological team agreed that after only three ECT sessions and weeks of individual and group therapy, she was ready to go home. I wasn't told much except that her bout with the demon's AND her deep depression was now past history.
Her Parkinsons meds remain the same but her emotional/mental meds now include:
(Funny how I focused on her hallucinations and paranoia and didn't see the clues of depression)
Well, its surely too soon to declare victory but her initial steps into the house and the hours that followed were wonderful. Of course we (and I) will remain ever watchful of her moods and (hopefully no more) suspicions.
So, now its getting late and I will say goodnight to you all because I HAVE A DATE WITH MY WIFE.... (he said smiling)
After 3 ECT (electro shock therapy) sessions her doctors and fellow patients in the mental facility say her smile and great disposition lights the place up. Her Parkinsons legs are moving again, the rigidity doesnt happen as much and she "forgets" her cane or walker most of the time. All this in addition to a great reduction in her PD and psyc meds.
I PERSONALLY HESITATE TO "ANNOUNCE" SUCCESS FOR FEAR OF HAVING HER RELAPSE, BUT I RELATE HER PROGRESS FOR EVERYONE ONLY TO BE AWARE OF THIS RELATIVELY NEW PD TREATMENT.
Her psyc report shows regular and sustained long periods of an upbeat mood despite the fact that of some memory loss (which is funny when we speak)
When I visited last night, she was standing with a small paper sandwich bag telling me that she was all packed and ready to go. !!!!! when I asked where she was going, she said she was going home to Rockaway.... too bad honey...., you haven't lived in that house for 40 years!!!!!!!! We both laffed. Oh yes, all her clothes were still in the drawers and closet.
So, her initial reponse to ECT therapy has been so far WONDERFULLY successful. She still has about 3-5 more sessions. If this is the result of 3 I can't wait for next weeks results. BUT, the reality is that we still are a long long way from home and this is the first test case of ECT after having a Pallidotomy.
I will report her conditions after she undergoes the balance of her electroshock treatments. As my wife said tonight, "maybe whatever Im going thru" (she doesnt remember anything about ECT) can help us and somebody else"
Hugs to you all and thanks for your public and private support.
To make a not so short story shorter, she is enjoying mental/emotional freedom in her words " I cant believe how clear I can think " "I feel great about myself" , "its good to be free again" "I really did a number on you and our family didnt I?"
As for her Parkinsons, she is still on her full dose of Sinemet but was able to reduce the Permax by 50% and Symetril by 30%. Most days she now manages WITHOUT her cane....all by herself... During her three week encounter, she managed to loose about 15pounds and she is now encouraged to excercise twice a day and cut out all KNOSHING...(eating small tidbits between meals..even if your not hungry ha ha )
She still takes a combination of Clozoril/Seroquil/Celexa and Ativan.
This most radical therapy was done to hopefully overcome the servere depression, parnoia and hallucinations all of which Joyce suffered. It has at least in this short term, proven itself. With these such positive results , ECT is another tool that many PWP's can use to improve their life quality. This is not a landmark case...only the fact that my wife had a Pallidotomy 41/2 years ago...was most interesting to her neurologist and neurosurgeon.
My wife asks me to tell you that she is so happy to have enjoyed these results and to pass the info on to this list and more.
Disclaimer: The result of ECT therapy that my wife is experiencing may not be right for your PWP.