Journeying Back to Self

Chris and I wish you and your family a wonderful New Year.

It’s been fifteen years since Chris was first hospitalized and more than that since he began to show symptoms of psychosis.

Today’s is my last post.

Thank you friends and readers for joining this blog and sticking with us. I started this blog in 2009, and recently welcomed my 150th follower. Thank you for your comments, thank you for personally getting in touch with me and sharing your own stories.

Chris is much older than when we started out and I’ve said and done all that can be said and done. The blog will still be here for reference and entertainment purposes only. My New Year’s project is to improve the categorization of my posts to make the blog more accessible. Pick a post, any post, and you may find something informative or just fun to read. If you would like a condensed version of the journey, do consider purchasing my book. I can guarantee, you’ll love it.

Just when I thought Chris had plateaued, something surprising happened. Chris’s motor tics have greatly diminished. I’ve noticed, too, that he is taking more initiative, such as going regularly to the gym and by speaking up for himself. The newfound initiative is a welcome sign because the negative symptoms of schizophrenia (motivation/initiative) are the hardest to treat and are what keeps most people with serious mental illness from working or studying.

This sudden shift appears to have been caused by his being prescribed an antidepressant back in August for his OCD symptoms (in addition to the Abilify he has been taking on and off at low doses for years). We learned that an antidepressant could reduce the tics. I’m now wondering if his problem all along has been some form of OCD and underlying depression that got labelled schizophrenia. These labels (and the drugs that are prescribed to treat the symptoms) are increasingly interchangeable (but not always effective).

Here’s what I know after fifteen years, and it’s not much. The treatment for what is called serious mental illness is woefully hit and miss. Nobody “gets” it. Psychiatrists haven’t much of a clue about what to do, and, despite years of trying, neither have I. We are at the mercy of the latest research results that may or may not help our relative. I had understood for many years that antidepressants were not recommended for schizophrenia, as it was thought that they could drive the person into mania. My husband was all in favor of trying one, Dr. Stern and I were not. Nobody even raised the possibility of OCD in Chris’s case.

I had no idea that motor tics were a sign of OCD and I’m guessing that this nugget of information is something that has come out only within the past decade. I recently stumbled across a page from the Mayo Clinic linking motor tics to an underlying symptom of schizophrenia. (Never heard that one before. Have you?)

I don’t know if these promising changes will last. Who knows what Chris’s future holds? I’m optimistic. He’s has a lot to give.

Parting thoughts

  • Trying anything is usually better than trying nothing. (In my experience, all interventions, coming from a place of love, lead to small improvements).
  • Learning good communication skills is essential.
  • Be an advocate for your relative. When it comes down to it, you’re on his side, not the doctor’s. Leave no doubt that you want what your relative wants and you will try your best to make it happen.
  • Holidays bring added stress.
  • Drugs have their place, but keep them as low as possible and never stop searching for a drugless alternative.
  • Not all doctors are automatically wrong. Be open to what they have to say.
  • Take an interest in this most intriguing condition. Enjoy the mystery.
  • Lighten up. The journey has its moments.
  • Look after your own health.
  • Live in the moment.

Someone who did have a clue about what is called mental illness was author Hermann Hesse, my go-to person for his reflections about journeys and discovery. Chris and I leave you with this:

“One must find the source within one’s own Self, one must possess it . Everything else was seeking — a detour, an error.”
― Hermann Hesse, Siddhartha

22 thoughts on “Journeying Back to Self”

  1. Thank you for your persistence, courage, generosity, and love. I, too, am optimistic about Chris as I see our son Daniel recovering from a fourth episode of schizophrenia without medication and with a somewhat inconsistent application of Focused Listening. This time, the healing trajectory is slow, as in 2008, but familiar. The two-steps-forward followed by a step back makes for a rocky road. The brain seems to have to integrate and solidify learning before it is ready for further progress.

    Good health and happiness to you and your entire family. May 2020 be remarkable for each and all of you!

    1. You have been an inspiration to me, Laurna. Chris has benefited a lot from Focused Listening. Though he no longer does it consistently, he continues to work on mandalas and has even got his roommate hooked on doing them as well. So glad to hear (and I am not surprised at all) that Daniel is getting over his fourth bout with schizophrenia, unmedicated. It is do-able. It takes courage, patience, and focus on your part to never give up.

    2. Laurna, my son is on 4th psychosis and he never been medicated.
      This phase is so terible; he see some things what we can not see, he is very aggressive… How to help him?

  2. Hi Rossa,
    May 2020 be filled with brightness and hope for Chris and the entire family. Happy New Year.
    Its been 2 years since Karan is back to India from US but he still does not want to go for any course or job. He does take interest in painting n makes nice paintings at home. I told him to go n learn the finer points, to take up some course in art, interiors or cooking since he likes to cook too, but he refuses.
    Am still worried about him as I want to see him settled n work consistently. May be you could help me by giving some tips.
    Regards,
    Sheela

  3. I have read your book more than once. I am curious, do you feel moving to Florida was good for your son? We live up north and the long winters are tough on all of us. Wondering if the warmer climate seems to help?

    1. Hi, Christine,
      Chris seems overall pleased with moving to Florida. He has said on a few occasions that the weather is more agreeble and that the move has given him a renewed sense of purpose and a new start. He just bought a bike to get around easier. There are a surprising number of cyclists here, which is a good thing as the public transportation system is not great.
      …Rossa

  4. Thank you. My oldest son moved to Florida this year and I am feeling a change coming for our family. Just not sure how or when.

  5. One more thing to try . . .

    I have been searching for answers since my teen daughter launched into what appears to be best described as Bipolar type 1. I haven’t tried this yet but there is a lady named Doris King who basically cured her Bipolar 1 with bioidentical progesterone cream. She has some books and a Youtube channel (just look up Doris King bipolar if you are interested) and she backs this up with many references including the late Dr. Lee.

    Basically the idea is that anyone, male, female, adult or child, experiencing a psychosis or mood disorder can benefit from progesterone because it has a profound effect on the brain. She was suffering from manic hallucinations, suicidal ideations, depression – the whole gamut, for 10+ years. After using the progesterone for 6 months all those symptoms disappeared and never came back. She’s been 10+ years symptom free.

    I may have my daughter try this as although she has improved with some supplements, homeopathy and Chinese herbs she is not 100% well and clearly shows some estrogen dominant symptoms.

    1. Hello, Candace,
      Thanks for taking the time to comment and tell the readers about a novel approach. Nothing ventured, nothing gained. If your daughter decides to try progesterone, please let us know how it goes. I have found that my son got better trying many different therapies, but none conquered all of the symptoms. He is currently starting treatment with a functional medicine doctor to treat PANDAS. This is the first time in all of these years since becoming symptomatic that he underwent blood testing, and got an answer, or at least a hint as to what is causing his symptoms. I may decide to write another blog post once he is a little further along in the process.
      All the best,
      Rossa

      1. Super interesting! We have done hair mineral, urine, genetic and saliva testing but not blood. The only thing that showed up of significance was a total lack of lithium present in the hair. The functional doctor prescribed lithium orotate in small amounts which had a small impact but not life changing.

        I will look into the various blood tests and would definitely love to see a blog post about your progress!

      2. My 24 year old son started getting very ill his first year of college. I was convinced it was PANS/PANDAS but he ended up being treated by psych doctors with psych meds. If you are able to expand on how you were led to the functional doctor and what tests were done I would greatly appreciate it.

        1. Hi, Christine,
          What led me to the functional medicine doctor was my own health (heart issues that I didn’t want to treat by allopathic medicine). The doctor was interested in my son and said right off the bat, before any blood, urine, and saliva testing, that it was most likely PANDAS. I hesitated entrusting Chris to his care for a full year because, my experience has led me to believe that that blood testing/hair testing doesn’t necessarily lead to results. Your email and Candace’s (above) have encouraged me to share a blog post that I am in the process of writing about why I am hoping that the PAN/PANDAS may provide better insight into treatment for schizophrenia. It’s a new area of medicine which is not fully onboard with the idea that it can occur in adults, let alone our 18 year old sons and daughters who are leaving home for the first time. I hope to post the information that you request by the end of this week. I’ll need to look up the specific tests that were ordered. Yours and Candace’s email came at the right time!

  6. We did have many tests done: cunningham panel, lyme tests, tests for strep, and even a lumbar puncture. The hospital my son ended up in does not believe in PANDAS/PANS even though it is a world renowned hospital. By the time my son was admitted he was catatonic: not moving, talking etc. I truly believe that meds he was put on for possible psychosis causes the downward spiral. It has been an exhausting 4 years. No one understands unless they have been through it.

    Thank you

    1. Here’s what I am putting into my draft post. The ASO antibody test is a blood test.

      “One of the test results revealed ASO antibodies at the very high end (220) of the optimal range (= 200 or below), indicating an active streptococcal infection that has neurological features. Normal test results are closer to zero even if a person has had a previous strep infection in their life. A second test revealed elevated blood brain barrier proteins (HHV-6) at ten times the normal level which demonstrated the presence of an opportunistic infection that can creep in when there is already a bacterial infection affecting the neurology of the brain. As the doctor explained it, HHV-6 a type of virus only seen because a brain has been weakened.”

      1. This doctor’s is a Doctor of Chiropractic and a functional medicine specialist. He talks about original infections with a second opportunistic infection that delivers the symptoms that are being experienced.

      2. This is all new to me and very interesting. I have heard of PANDAS but never considered it as a cause in our case. Are these the usual tests done for PANDAS?

  7. I would like to find a doctor I can trust to run tests again. We live in the northeast and it is hard to know what type of doctor to see. Psychiatrists usually do not run these tests.

    We are all in this together. It is nice of you to share what you have found out. Thank you.

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