Research Part 1

I’ve been participating in a new adventure.  I am currently living at the National Institute of Health Clinical Research Center in Bethesda, Maryland.  I am participating in multiple research studies, the main one being a study looking into whether antipsychotics cause cognitive impairments in people with schizophrenia.

I learned about this study 5 years ago when I began frequenting www.schizophrenia.com .  It is listed under the “Current Research” section of the website.  When I first read about the study, I learned that you generally stay in the hospital for 6 months.  At the time, I was in the psych hospital more often than I was at home.  Getting to actually live in a hospital sounded amazing to me.  However, I was also in college and living with my boyfriend…going off to live in a hospital for 6 months was not reasonable.

In April 2013 I revisited the idea of participating in this research study.  I learned more about it then presented the idea to my mother to get her opinion.  She surprised me by being completely supportive.  I contacted the right people, got an application, and submitted it.  I was told that a decision could take several months because part of the application involved reviewing my records from therapy and all my hospitalizations.

In January 2014, I received some news.  A decision would be reached soon.  For a couple weeks I waited nervously, hoping really hard that I would be accepted into the study.  In February, I was contacted and told that a decision would be made if I agreed to take part in an outpatient study first.  This study was called The Sibling Study and looked at both genetic and cognitive similarities between schizophrenics and their siblings.  My mom and I would be flown to Bethesda where I would undergo tests for two days.  I agreed to participate.

The first week of March, we flew to Bethesda…which is important on its own because I am terrified of flying.  For two days I participated in interviews, neuropsychological testing, MRIs, and exams.  At the end, I was told a decision regarding the inpatient study would come in a few days.

The next week, a decision came.  I had been accepted.  Two weeks later my mom and I flew back to Bethesda so that I could be admitted.

That was the middle of March.  I’ve now been at the hospital participating in research for over a month.

The main study I will be participating in is nicknamed “The Coded Study.”  It has two portions that each last 4 weeks.  For one portion, I will be on my medication and undergoing tests such as PET scans and MRIs.  For the other portion, I will be on a placebo and undergoing the same tests.  The portions could happen in any order.

To prepare for this study, I have been tapering off some medications and onto others.  I am no longer taking Trazadone to help me sleep.  I am in the middle of switching from Thorazine to Seroquel.  I will eventually taper off the Lexapro as well.  This change in medication makes it easier for the Coded Study to be carried out.

I suppose you want to know what it is like to live in a research hospital.

I have my own spacious room.  I eat 3 meals a day that I pick from a menu.  I have groups to attend such as fitness, social skills, recreation therapy, art therapy, work skills, and self-management.  Each week, patients on the right “level” go on outings into Washington DC.  These outings have so far included museums and monuments.  Every other week, therapy dogs visit the hospital.  Some nights there are activities like bingo or themed parties.  There is a library, a gym, a chapel, and various recreation rooms.  There are seven other patients with schizophrenia on my unit.  Not all the patients are in the same study.  In fact, only one patient can be in the Coded Protocol at a time for safety reasons.  Once a week I see my psychiatrist one-on-one and once a week I attend “rounds” where I am interviewed by the psychiatrist in the presence of other doctors, research assistants, social workers, and nurses.

There is a big focus on safety.  Every day I am asked about my symptoms and whether I feel I am safe.  Am I at risk of harming myself or others?  Do I fear that others want to harm me?  A lot of the questions my psychiatrist ask me involve learning about what to expect when I am on the placebo for 4 weeks.  I really don’t have a lot of insight into what that will be like though.

I talk to my mom on a nightly basis.  She sends me a care package about every two weeks.  Usually a picture of Sheriff and some candy are involved.

Sheriff did not accompany on this adventure for multiple reasons.  I felt that I would not be able to take care of him while I am possibly unstable during the time that I am on a placebo.  There is a very real possibility that I will struggle to take care of myself during that time.  I also do not have access to pet stores to buy dog food or other supplies he might need.  Nor do I always have access to the outdoors for his toileting needs.  So, Sheriff is greatly missed but safe and happy at my parents’ house.

I’ll continue to post updates on how I am doing.  The next one will probably occur after or during the Coded Study.  I may become psychotic during that study without my medication so I might have an interesting tale to tell.  One thing that will occur is a better diagnosis or a confirmation of schizophrenia.  While I am off my medication, the doctors will get a better idea of my symptoms and hopefully a better idea of what specifically I should be labeled as.  I have to remind myself that is all it will be…a label

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3 Responses
  1. Edy says:

    January 2015
    I’m writing with gratitude, your site has helped me understand my own daughter.
    There are no recent posts, so I’m wondering what happened. Please let me know how you are
    I’ve written before, but that was some time ago. I hope you’re posting again soon

    • Katherine says:

      Edy, I accidentally deleted your comment asking about EPS. I then went to undue deleting it and re-approve it, but I accidentally permanently deleted it. I was on my tablet, I apologize. I also apologize for neglecting to post in such a long time. I will try to write a post this week. As for your question, EPS stands for extrapyramidal symptoms, or extrapyramidal side effects. They are a type of movement disorder caused by some anti-psychotics, especially first generation ones. This includes akathisia (restlessness usually in the limbs, very uncomfortable as it feels like an intense urge to move constantly), parkinsonism (muscle rigidity or tremor), tardive dyskinesia, (jerky movements, often beginning in the face or mouth; can become permanent), and dystonia (continuous muscle contractions and spasms). There are medications that can treat these symptoms…most often Cogentin or Benedryl. When I was on Thorazine, I kept Benedryl at my apartment in case I began experiencing these side effects. Thorazine has a pretty high risk for this and there was an incident in which I experienced muscle rigidity in my arm after a dosage increase.

  2. This is a great thing you are doing. Being a Pharmacist, I have worked a lot in the psychiatric areas. This study can yield some really important results, and you are a part of it all. Until recently, chorpromazine and haloperidol where the standard, but now thee are so many other drugs.When I graduated in 86. Thorazine and Haldol, though great drugs, have tons of EPS. I would see it all the time and the patients hated it.The atypical’s have better results, but you know that already. Keep up the good work and hang in there. I just think, having your dog would make things so much better, because the connection between humans and their “best friends” is indescribable. I was recently away from my 3 for a month and missed them more than anyone or anything. Keep up the good work and persevere, because not matter how nice it is, It’s not home. Peace, Rudy.

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